Hello, it's me again!  It's been six months and thirteen days since Tucker received his 'Angel' wings.  Although, when I think back, he was always an 'Angel'; but now he just isn't here and I can't hold him.  It hasn't even been a year and yet it seems like an eternity.  I miss  his loving eyes, his infectious smile, the sound of his laughter, his kiss on my cheek, the smoothness of his skin... I miss his smell.  I know everyone who reads my blog has said that it makes them cry and that's not my intentions, but there are so many more things I have experienced since Tucker's death that I could never have imagined.  Unless, of course, you are a 'bereaved parent'?  I absolutely hate belonging to this group.  We have met some wonderful people, but I just want Tucker back.  I would give anything to hold him for a minute - but I know that wouldn't be enough, I'd always want more!  Some days the pain of losing Tucker is unbearable, I don't eat, don't shower/get dressed, don't get out of bed, etc.  With time, those days are beginning to get less frequent.  I have even recently caught myself 'happy' again, which is quickly changed to guilt for having that emotion.  Dave and I have been going to a "Bereaved Parent" group at the Coping Centre in Cambridge.  It is so peaceful there, the people are wonderful and I feel validated about these emotions that I am experiencing.  It may sound odd, but I thought I was going crazy.  I knew people shared 'experiences' having suffered the loss of a child, but it reassuring that I'm not alone, someone does feel the way I do - not someone, many people.  After sharing stories, you learn that grief does have stages:  pain, sadness, anger, guilt, etc... but there is no correct order to that grief.  You can be in the anger stage, then feel sad and then return to anger, once, twice, whatever.  Everyone is different.  Some people 'cope' better than others; but don't think that they 'haven't grieved - they just grieved differently.  Dave and I grieve completely different.  He's been back to work since October, I can't even imagine returning to work at this time.  The girls have missed out on so many things over the years and I know they need me and I need them.  Our family motto was to cram a lifetime of memories into whatever time we had with Tucker, which we did; however, it was geared more towards 'Tucker's' experiences than the girls.  There was too much guilt doing things with the family if Tucker couldn't participate, or if one of us would stay behind with him, while the other did things with the girls - that's not "family".  So, over the last six months, the girls have gotten to experience a few 'new' things:  tobogganing, snow tubing, downhill skiing, and the one I dislike - life without Tucker - our 'new' normal.  I know that Tucker will always be with us, his memory will live on in my promises to him; we have a large, beautiful canvas of Tucker over our mantle (that my good friend, Carolyn, gave to us as a gift), we have Tucker's photos everywhere in the house, even on the kitchen table.  When we went to my cousins for Thanksgiving Dinner, I brought the picture and it was displayed at the end of the table - and it will continue to be.  Initially, it was hard to see that picture every day and lately I realized that I have been accustomed to seeing it on the table, that I don't even realize it's there, yet I know it comforts me?  Weird?

I don't know if you remember the Veuger family:  Dave, Cynthia, Caitlin and Matthew?  Well, we met because of our beautiful boys.  Both Tucker and Matthew had Leigh's Disease, and the Veuger's came to Tucker's Time Annual Charity Golf Tournament last year; now I consider them great friends.  Well, I am deeply saddened to say, that Matthew lost his battle earlier this month, March 10th.  So, Dave and I spoke to the girls and we all decided to go out to Vancouver to support the family.  It was the trip that was planned prior to Tucker's final admission; in fact, we were booked to be out there last September.  We didn't make it the 'memory' trip we had planned it to be when we were originally going with Tucker.  We went to be there to support the family.  It was incredibly hard and guess what?  I probably said things to Dave and Cynthia that I hated hearing after Tucker died; such as, "How are you?"  Now, I sincerely wanted to know - but it is a rhetorical question, one that just runs off everyone's tongue.  Having recently experienced the loss of a child, you'd think I would have known the 'right thing to say?'  Well, I didn't, I don't and I guess there is no right thing to say.  Everyone is different and will take things differently, as I have learned in our 'Coping' group.  Unfortunately, it was the beginning of March break in Vancouver so the memorial was scheduled so family and friends were able to attend. Matthew's 'Celebration of Life' was held yesterday.  I wish we could have been there, but I am thankful we were able to support them shortly after Matthew received his 'Angel Wings'.  I hope everyone can send a thought or prayer for Matthew, and his family - to give them strength to get through this tragic loss.  I would like to extend a special "Thank You" the Vancouver Fire Department along with Dave's station for the exceptional hospitality - it was greatly appreciated.  Dave, Cynthia and Caitlin are lucky to have your support.  Thanks again!

These past six months have been more than difficult for me.  I have so much guilt surrounding Tucker's life and death.  I know that if I was a friend of someone who'd loss their child and I listened to what I'm saying, I know that logically I shouldn't feel that way, I know that Tucker loved me, I know that Tucker knew how much I loved him, I know that Tucker was happy and that he really enjoyed being with us:  Dave, Tori, Avery and I, I know this, I know I advocated every situation to the best of my ability, and more, in my head... my heart tells a different story.  As Tucker's disease progressed from when he was first diagnosed, he lost his words.  He was still able to express his wants and needs - kind of like charades, but I am still wanting to 'hear' this from him.  Something I will not get.

I know people think "how can you say that?"  But what you may not know, I had to have my gallbladder removed four days prior to Tucker's death.  So, I myself had been admitted as a patient six days prior, trying to make important decisions with Dave, decisions where there were no 'do-over's', while on pain medication.  It was the only hospital admission of Tucker's life that I had not slept with him in his bed and that kills me.  Did he know "why" Mommy couldn't be with him?  Did he think he'd done something wrong and I was upset with him?  Did he think that I didn't love him anymore?  These are just a few of the thoughts I struggle with daily and will never get the answers I need as Tucker isn't here to tell me - he is the only one who could tell me how he felt.  There were a few days that I couldn't even get to his room because I was in so much pain and it was agony not to be with him, knowing that he was on life support, knowing the decisions Dave and I had made with the doctors... no one could understand this tremendous weight of guilt I am carrying.

Then we went away with the girls...it was nice not to have constant reminders of our loss:  Tucker's bedroom, his wheelchair, his meds, his machines, photos, toys, etc.  But it didn't ease the pain.  Tucker was gone.  I know that I tried to be 'happy' for the girls and I think that I may have pulled it off for most of the time?

Christmas, ughh.  How do you shop for presents, when you can't buy for one of your children?  Going into stores, seeing the hustle and bustle, hearing the music, watching the wonderment on children's faces as they lined up to sit on "Santa's" lap and tell him what they hoped to receive.  It was painful to see families together while I was literally falling apart - knowing that I had to get presents for my girls, wanting to get them presents, but desperately feeling helpless.  One of Avery's gymnastic coaches had told me about the 'Christmas Tree' for the bereaved.  It is in Limeridge Mall, each and every year.  It is run by volunteers and you can purchase an Angel ornament to take home, but you can leave a note to put on the tree for your loved ones... I was touched and thought that might be helpful for us as a family to do.  Well, we didn't have cash, so Dave and the girls went to get cash, while I began writing 'the note' to Tucker.  Dave wasn't even gone 5 minutes, as the ATM was only about 20 feet from where I was.  He returned to find me a complete puddle, with the two senior volunteers trying to comfort me.  Dave had to complete the note.  So, I came up with an idea.  On Christmas morning, we would take 6 balloons to Tucker's grave and we would attach a picture, a note, whatever (as long as it would float) and release them.  Dave and the girls loved the idea as Tucker absolutely loved balloons!  Seems foolproof, right?  Wrong.  Dave, Tori, Avery and I were so sick from December 24th until January 2nd... we didn't get to do it, sorry Tucker.  In fact, we didn't even have Christmas dinner.  As time passed, there would be days I just couldn't go to the cemetery, days that there were scheduled appointments and such, or Dave was working - there excuses I know...  But we did go for Valentines Day.  Tucker's balloon sailed away along with Tori's and Avery's, Dave's balloon lost height behind the house across the street and my balloon got stuck in a tree at the cemetery.  We had a good chuckle at that.

At the end of February, I had an umbilical hernia surgically removed - the size of a grapefruit the doctor said.  What was suppose to be a day procedure for most, but scheduled to be an overnight for me (I have a clotting disorder and it was just a precaution as with my reconstructive knee surgery in '07, my appendectomy in May '10, my gallbladder in Sept. '10, no issues), well it turned into a night mare!  I ended up requiring 2 units of transfusion and 6 days later was discharged; only after the CT scan showed that I had a large hematoma (pool of blood) where my diaphragm was?  So, the drains that were supposed to only be in for 3 days ended up in for over a month.  One was removed last week and the other was removed today, yippee!  Poor Dave, I was prescribed bed rest with bathroom breaks.  Well, that didn't last long because once we heard about Matthew, I called the surgeon to grant me permission to fly out to Vancouver, which you already had read we did.  So, a special 'thanks' goes out to my dear husband for all the extra work he had to do.  There is no other person I could imagine going through all of this with, I love you!

Which brings me up to today, why I've been up since 2:30am, watching videos of Tucker, looking at photos and editing the blog... it is now 5:03am.  I know everyone has different beliefs and please try to be open minded.  Dave went with me to see a 'Medium' today/yesterday.  I had only learned of this within the past six weeks as it was mentioned from another couple in our 'group'.  In case you are unfamiliar, a Medium is 'spiritually in sighted'; they sometimes can tap into the 'spirit' of your loved one.  It's not that I did or didn't believe, it's that I needed to 'hear' from Tucker?  So we went.  Well, I'm a believer.  There were things that this Medium could not have known.  Not by family, friends, or the internet - specific things.  We were only there for an hour, and the Medium talked for the entire hour... and although there were 'vague' statements, the few that were so specific diminished my scepticism.  I know it has taken away my guilt, but it may have lessened it, a bit?

On that note, I should try to get some sleep as the girls will be up for school in less than 2 hours.  Good night, sweet Tucker.  I miss you and long to hold you in my arms.  Know that I love you more than I could ever express.  Daddy, Tori, Avery and I miss you and talk about you daily!  Kisses to heaven.  Oh, please watch over Matthew!

Tuesday, October 19th, 2010 ~

    So much has changed since Tucker received his 'wings'.  Life isn't nor will it ever be the same again.  Where do we go from here?  How do we do it?  Many people say, "How are you?", "He is in a better place", "He's not in pain anymore", "He's at peace", etc.  I realize that family, friends, etc just don't know what to say when in this situation - we as humans are never taught how to deal with death.  We are taught to walk, talk, use proper hygiene, share, take turns, read, right from wrong and the list goes on - but there is no manual/class to teach us how to deal with death?  I can't speak for everyone but, "How are you?" doesn't work for me.  Are you asking because you truly want to know?  Do you really have no idea?  I believe it's neither of those two... I know you all have an idea, I know you all care, but for me - I feel like I have to lie because I don't want to upset anyone else.  As for some of the others... How can he be in a better place?  Why wasn't being with his parents/siblings, family and friends the best place for him?  Again, I know everyone has the best intentions - and do not go over any of our conversations and think that you've upset me - it's the entire situation.  There is nothing that anyone can say that will make me feel better.  I have lost a child, our only son.  My daughters have lost their brother.  I know people say that, 'in time' it will get easier...  I think that "in time, we will better learn how to deal with our guilt, our feelings, our anger, our helplessness, our loss".  Now what should someone say?  Do you mention the big 'elephant' in the room or act like normal?  For me, I like normal.  One of the other things I thought of... if you remembered a story about Tucker - share it with me; that's what I want, especially for Tori & Avery, they are both so young and 'in time' memories of Tucker are going to get 'lost' in their daily lives, in their new experiences.  Not everyone will have a story to share and that's okay.  Just talk about what's been going on in your lives... I know you all care and I appreciate all of your concern; but really, I am not doing well.  I have so much guilt wondering if I did the right thing for Tucker, could I have done anything else or differently?  There's guilt over the time I have spent with Tucker compared to Tori and Avery?  Have I caused emotional damage to my daughters - is it reversible?  I am extremely angry.  Why Tucker, why should any child have to inexperience these horrible diseases.  It's hard enough to see a parent or grandparent go through a terminal illness, but for me - I've been able to comfort myself knowing that they had a childhood, they married and had children, they had a 'good' life, a long 'life' regardless they experienced 'life'.  But how does one comfort themselves when it's their own child?  In our case, my promise to Tucker helped me spread awareness and fundraise for Mitochondrial Disease research.  Knowing that we didn't have much time, I planned day trips/experiences, etc with our family to create as many 'memories' and capture as many 'photos' as I possibly could.  Bottom line, it still wasn't enough.  By now, you have probably realized that I'm in the "Guilt & anger stages of grief".  Sorry:(

     This past month has been so hard for so many reasons.  In the past, I've been able to hold it together around the girls.  Since Tucker's death - not so much.  I don't sleep, unless I get an hour or two at a time; I don't want to get out of bed; eating/showering isn't on the priority list; I do not want to do anything.  Even if I did, or have to, I don't have the concentration required.  Avery has even made a few references, "Mommy, are you still sick?" "Mommy are you sad?"  I can't remember the context, but while talking to other friends, Avery made reference to me wearing my pyjamas all of the time.  Dave and I took the girls to Great Wolf Lodge a couple of weeks ago... they had a blast and I loved being with them - but seeing the 'family photo' after the Woolly Mammoth ride just was so wrong.  Tucker wasn't in it.  Even being with our girls, Dave nor I were truly 'happy', just going through the motions. Then my mind wanders to our annual family photos?  Does that mean we never get a family portrait again?  We also took the girls to the Rockton Fair on Thanksgiving Weekend, it was an absolutely beautiful day.  As soon as we got into the van - one of Tucker's songs came on (which has happened numerous times over the past month) - Dave and I both look at it as a sign from Tucker.  He loved music and there were a handful of songs he went crazy dancing with when they came on the radio.  At the fair, while the girls were on a ride, Dave said to me, "This day would only be more perfect if Tucker was here, he should be right here" (meaning Tucker in his wheelchair in front of us).  Dave was right.  So, I now have to look forward to a life of 'nearly perfect'.

     Dave returned to work.  No I am not upset, just confused?  How is he able to function, while I am a complete mess?  Men must definitely be from Mars.  Tori and Avery have had their moments.  Just after Tucker died, Tori said," I don't want Avery to see me sad because I don't want her to be more sadder."  Ah, what 5 year old hides their own emotions considering the feelings of another child?  I felt both proud and sad for her at the same time.  I think having been open and honest with them both from the time we found out, made it 'better' (as good as it can be under circumstances) for them.  We always welcomed questioned and let them talk freely.  The only difference, is that until recently, Avery has only ever said one or two statements.  Now the comments/questions are daily, sometimes multiple times a day.  It really is affecting her.  It's affecting all of us.

     Again, I want to say, "Thanks", for all of the food, cards, gifts, donations in Tucker's memory, emails, offers to watch the girls and calls.  I know I haven't returned emails or messages, but I will try.  Actually, two of our friends families got together and purchased a 'Star' for Tucker.  It is beautiful.  I hope it ends up being the star we see each night from our patio, it is the brightest and it looks as though it is just watching our family - we actual referred to it as 'Tucker' shining down on us - so it was ironic to receive the gift, but very thoughtful and appreciated.

Friday, September 24th, 2010 ~

    I don't know where to begin, but there are a lot of people that have touched our lives and the lives of our children.  We have received so much support from so many people over the past 2 years,1 month, 1 day from the day of diagnosis up until the day Tucker received his 'Angel Wings'.  Of course, one would naturally expect the support from our family and friends, that we often forget to say "Thank You", to those closes to us - as it goes without saying.  But without the support from Dave's Mom Mary pretty much dropping whatever she was doing to help out, things could have been more chaotic - if that's even possible?  My Mom Dodi, who when she came down to help out.  There are also countless friends who deserve a special, "Thank you", for lending your ears, helping out with the girls, dropping off food or giving me a shoulder to cry on.  It goes without saying just how much Dave and I appreciate your friendships and look forward to those relationships continuing.

    When we spoke with the funeral director - Michael, he suggested that we separate Tucker's Obituary from all the 'special thanks' we wanted to send out - and to follow up with another add a week later.  After I thought about it, I spoke with Dave and explained - why would anyone look for a 'note of thanks' a week later, it would have been expected with the obituary?  So, I decided to put it in my blog!  It will remain here for everyone to see, forever!  The only thing I am worried about is forgetting somebody, so please, if I've forgotten you, let me know and I will simply make the correction.

To Dr. Choong & the P.A.C.E Team:  once I called the P.A.C.E team, a weight had been lifted, I knew you were doing absolutely everything you could for Tucker.  Over the next eight days, the worst thing imaginable for any parent - happened to us.  Dr. Choon, Dr, Gilleland and Dr. Cupito (Pediatric Intensivists), and several of Tucker's PCCU nurses (Natalie, Steph x2, Heather, Jennifer, Shawna - I hope I haven't forgotten anyone) took amazing care of Tucker, while trying to help us through difficult decisions - they provided us with the medical knowledge, experience, support, compassion and understanding while we came to terms with our choices.  I know it sounds bizarre, but you all made it 'easier' for Dave & I - thank you so much!

To Dr. De Souza & the ER Staff:  I know that Dr. De Souza wasn't the only ER doctor that had taken care of Tucker, but you left the most positive impression on me.  I know after Tucker's diagnosis back in August of 2008, it was crazy and know one knows better than I how well the ER Staff took care of Tucker, at each and every visit!  When I went in for my Appendectomy in May, and the removal of my Gallbladder in September - I honestly don't think many of the nurses remembered me?  At least not without Tucker.  The Child Life Specialists in the ER are fabulous - they are their for a good reason and they do a wonderful job.  Many times I wouldn't have to find a doctor/nurse to ask questions... they would take the initiative to get the answers, make sure we were comfortable, stayed with Tucker if we needed a bathroom break, make a phone call or just to get some food.  Although we only called 9-1-1 a few times, I want to send out a special thank you to the Hamilton EMT's that work out of Waterdown, Station 24.  You truly wanted to know about Tucker and his disease and what would be best for him.  Many of you inquired, "In case of next time...".  I would also like to thank the Volunteers at Station 24, in Waterdown (Hamilton Emergency Services).  You guys, along with your families are more like family to us.  Over the past two years, you guys have supported Tucker and our family by hosting fundraisers and raising awareness of Mito Disease.  I can say from watching Tucker's face he loved being around you guys.

Friday, September 17th, 2010 ~

     It hasn't even been 24 hours, yet it feels like eternity.  My heart is broken, my arms ache because I've never not held you a day in your life, until now.  I didn't know I could miss someone so much.  I'd give anything to hold you again, to see those beautiful eyes and that radiant smile.  I am lost.

      Daddy and I have had so much to planning to do.  It has to be perfect, nothing less than that will do.  Tori and Avery miss you so much - they tell me they want you here, with us.  I try to keep a brave face but I don't know how much longer I can do that?  Everyone is in bed and it is so quiet.  I'm still listening to hear your breathing on the monitor, waiting to give you your 11 pm 'meds'.  I don't know what I am going to do after the bustle of the next few days?

       We plan to go to the MitoCanada "Running On Empty" walk tomorrow.  To see your friends and continue this fight.  If anyone with a Tucker's Troop T-shirt has one from last year - please wear it with us!  Then I will see you for the first time again, but I know it's not you... I am afraid.  I want to see you so badly, but not like this.  I don't know how I will get through Monday?  Tucker, I need your strength!  God, I want so much to hold you, sing to you and kiss you good night.  I wasn't ready for you to go, I'm not ready to live my life without you in it - that wasn't the plan.

        Avery had her first day of school today, you should have been with her.  Once we got home, I asked about her 'first day of school'.  You could see the wonder in her eyes and the hear the excitement in her voice.  We hadn't even finished talking about the things she had learned today, when she said, "Mommy, I want Tucker." I simply said, "I want him, too!"  We cuddled and rocked - but I know it wasn't enough.  Please watch over Avery & Tori, they are having such a hard time without you here.

      Thanks to everyone for all of the home cooked dishes, flowers/gifts, phone calls and emails - we really appreciate everything.

      Well, Dave is summoning me, I better try to get some sleep.  We hope to see you at the fundraiser tomorrow at Bayfront Park, in Hamilton, ON between 11am and 3pm.

      Goodnight, Tucker - sweet dreams!

Thursday, September 16th, 2010 ~

     Writing this entry, is the most difficult entry I will ever write.  It is with a broken heart that I share with you that Tucker David Patterson, my big, brave, beautiful boy received his "Angel Wings" on Thursday, September 16th, 2010 at 12:27am, peacefully and comfortably with Dave and I holding him.

     I initially brought Tucker to hospital on Wednesday, September 1st for distressed breathing.  We had the option of admission, but the ER doctors explained that Tucker was basically hyperventilating - breathing better than we would, but his heart was working extra hard and where we know to slow our breathing, he does not.  So we went home. 

     Thursday, September 2nd, 2010, Tucker's friend Alexis Roung (also diagnosed with a Mitochondrial Disease) received her wings.  She was just 5 years old and had fought a fight like none I'd seen - until Tucker that is.

     Friday, September 3rd, 2010, we returned to hospital as Tucker's GJ Tube was leaking and needed to be replaced.  Saturday, September 4th, I called Dr. MacNay as Tucker had a terrible night and breathing pattern had worsened, so back to Mac we go.  Tucker was admitted and another battery of tests performed.  All tests came back negative?  Sunday afternoon, Tucker seemed to be more like himself and then on Monday, September 5th, 2010 he was discharged as Dave, the doctors and I believed he was back to his baseline and Tucker wasn't 'sick' as per all of the test results.  So, Dave, the kids and I went to Alexis' visitation.  Tucker just didn't seem 'right'.  Dave and I were very concerned that something was overlooked?

      We had just arrived home, I changed and went to lay down with Tucker when he vomited (we thought he may have aspirated as well), something he hadn't done in months.  We called 9-1-1 and Tucker was transported back to McMaster and admitted.  The doctors were showing more concern as Tucker's heart had been working overtime for so long now.  Again we were admitted.  Dave stayed in hospital over night with Tucker so that I could spend some much needed time with the girls.

      On Wednesday, September 8th, 2010, we had arranged a private nurse to be with Tucker for 3 hours, while Dave and I brought Tori to her first day of school.  As nursing isn't provided as the government feels it is paying double since Tucker is in the hospital with nurses.  Theses nurses generally have a 3 patient to 1 nurse ratio, and no one would know if Tucker vomited or needed suctioning, etc.  That is why we hired our 'own'.  However, Dave called me to let me know that Tucker had had a horrible night and was vomiting black.  I decided, he should come home to take Tori to school and I would go to the hospital.  I got the girls bathed, all dressed up and the photos taken.  Then off to the hospital I went.

      I arrived as the nurses were changing Tucker's bedding.  His stool was now black as well.  I didn't need to go to med school to know this was serious.  Within the first 40 minutes of my arrival, it seemed as though nothing was being done - it definitely wasn't being done fast enough.   With that said, McMaster is a teaching hospital and at that point only the resident and a medical student had been coming in and out of the room - along with his nurses.  I asked our nurse, to please go and get the charge nurse - I had had enough, Tucker was in obvious distress and things needed to be done.  One thing McMaster has implemented is the P.A.C.E. team (don't ask me what it stands for?), basically, if you think your child's condition is worsening, or that you're not receiving the appropriate care, you can call them and a Pediatric Intensivist along with their team of nurses, respiratory therapist, etc come a running.  I requested the charge nurse to call P.A.C.E.  The team came running.  Tucker was literally whisked off to the Pediatric Critical Care Unit.  I was so scary to see Tucker like this; I even called our mother's to come to the hospital.

       I know everyone has had good/bad experiences at different hospitals throughout their lifetime, I completely support McMaster and will continue to do so.  The only 'training' point I would like them to learn from this... Is that if I as a parent can see Tucker in distress - how could medically trained professionals not?  Nurses, doctors, students, etc?  The signs were obvious - the staff should have intervened hours before my arrival.  This does not include our private nurse... I had released her as Tucker needed me and she stayed, to support and comfort me.

       Tucker's care in the P.C.C.U was amazing.  We had never been in the Critical Care Unit before and didn't know what to expect; however, I know that both of us expected to still be bringing Tucker home as everyone gets more than one chance, right?

       Well, Tucker's respirations were so high, as was his blood pressure and heart rate.  His little body just wasn't able to process his breathing properly.  Tucker received a CT Scan - negative and a MRI.  The MRI showed significant deterioration to the known affected areas of his brain stem from 2008's MRI.  IT was affecting his heart and his respiratory system.  As a result, Tucker was placed on a ventilator (life support).  Although Tucker was given many sedatives - he didn't want to sleep.  He wanted to take everything.  We were assured by the doctors and nurses that he wasn't in any pain - which was evident through his beaming eyes and infectious smile.

       On Monday, September 13th, Dave and I had a doctor conference with Tucker's Team.  We were advised that it was in the best interest of Tucker to see if he could breathe on his own, as the longer a person is on the ventilator - the more damage it does to them, especially since Tucker wasn't sick, he wasn't fighting an infection, nothing - it had come down to the dreaded DISEASE.  The doctors also explained that with the trends recorded on the ventilator, Tucker would not likely be able to breathe on his own.  It was at that moment that Dave and I made the most difficult decision anyone would ever have to make - one that no one should have to make.

      We invited friends and family to come visit Tucker on Tuesday and Wednesday.  There wasn't a break in the action during visiting hours and Tucker was a trooper - smiling for everyone.  How can my precious boy have such a dreadful disease and still share a smile with each visitor?  The only answer I have, "He's amazing!"

       On Wednesday afternoon, Tucker developed a mid-grade fever and was administered Tylenol to bring it down - which it did for a bit.  After the visitors were gone, Tucker's fever reached just over 41 degrees.  The medication was re-administered and Dave and I gave him a bath.  Tucker was made very comfortable and laid in my arms with Dave beside us.  I know I have shared so much with the world up until this point, but I want to keep Tucker's last few hours private - for Dave and I.  We will share them with Tori & Avery when the time is right.  All that anyone else needs to know, is that he was very comfortable and he passed very peacefully in his sleep.  Sweet Dreams, my love, until we meet again.  I promise to continue your fight to bring awareness and raise funds for research on this Disease I will never forgive for taking my dear, sweet, brave, beautiful boy.  I love you Tucker, my angel, be free!

     He was the bravest person I know, he was a fighter, he made any one he met smile - he taught me patience and understanding.  I will never forget you!

P.S.  Dave has started a site at:  www.caringbridge.org for Tucker.  Once on the site, type tuckerpatterson (all one word, lowercase) where it says visit site.  You will be directed to Dave's site, which he has been keeping updated with funeral info, etc.

Tuesday, August 10th, 2010 ~

     I am getting a little tired of getting on my blog only to find out that I haven't been on in ages - literally.  I guess it's just summer!  It's been a busy one with vacation, planning the Golf Tournament, hosting out of town guests (will elaborate on that in a moment) and now getting reading for the MitoCanada "Running on Empty" Event.

     First and foremost - Tucker is doing well.  He continues to lose muscle and it is really obvious that he can't hold his own head up - he really is similar to a 'floppy' doll.  Some days his breathing is more laboured than others but he continues to smile and laugh through it all - he is truly a joy.  He amazes me most of the time.  I can be having one of those days and I will be a complete mess, crying and Tucker will just start smiling and laughing that I can't help not laughing.  But it is extremely difficult to watch the deterioration, always wondering what will happen next, can we plan to do this (generally sooner is better than later - not to mention that he can be totally fine one minute and then the next we are enroute to the hospital).  Thankfully, we have only had one hospital trip this summer, which was a result of Dave accidentally pulling out his feeding tube.  We had been doing so well with the Mickey GJ Tube and then this... once we arrived, we were told that the company had pulled all of the ones we prefer off the shelves due to the humidity - they weren't sure how the plastic would stand up???  Common sense, the tubes are stored in a temperature controlled hospital?  What about the ones that are in patients?  Sometimes, I don't get these people.

     We  vacationed at Calabogie Lodge (time share) at the end of June/beginning of July.  The weather was so so, mostly overcast... kids had a blast and met many kids the same ages as them to 'hang' with.  Tori and Avery have continued exercising their independence they gained while away.  We rented a boat and this year we even took Tucker out on the boat.  I think he liked it?  The vibration of the motor and motion of the boat made him very sleepy - one should try capitalizing on that and making a bed like that for the kids that have difficulty going to and staying asleep.  Dave re-connected with a college buddy who lives nearby the lodge with his family - their girls were close in age with our girls and everyone got along really well - it was great to meet Tim, Shona, Delanney and Peyton!  Look forward to see you when you head down our way.  Our friend 'hockey' Erin came with us as well - due to the fact I couldn't lift anything because of my Appendix.  A great time had by all.

     We came home two days before the twins birthday and had their first 'intimate' birthday party with only Dave's family.  Which was nice, not having to plan a big party.  We like having the party to let everyone celebrate each milestone but we really don't want the gifts, we just want the kids to feel loved and give family and friends a chance to see them.

     Peter and Josie Racco of Racco Homes was the Platinum Sponsor for Tucker's Time 2nd Annual Charity Golf Tournament.  Weather was looking like it would be an issue, with hard rain, humidity, etc... well, I had a little chat with Mother Nature and she held off on the rain - I did however, forget to ask her to turn down the humidity :(  I must say, last year's tournament was good, but this year, was definitely great!!  More sponsors, more people, more prizes, the same spectacular food from Carlisle Golf & Country Club all contributed to the total donation exceeding my $10,000.00 goal.  I am currently making arrangements for a cheque presentation to Dr. Mark Tarnopolsky, First Research Chair of the Neuromuscular Disorder Clinic at McMaster Children's hospital.  The cheque will be in the amount of $18,687.17 - give a round of applause, that is fabulous!!

     Prior to the tournament, I was contacted by a Mito Mom out in Vancouver, B.C.  Her son - Matthew, had been diagnosed with Leigh's Disease last year and they wanted to come to the tournament.  Incredible!  So, not only did Matthew, mom - Cynthia, dad - Dave and big sister - Caitlyn come to the tournament - Dave had another five of his friends come for it as well.  We invited Matthew and his family to stay with us during their 5 day visit and the similarities between our families is eerie on so many levels. Matthew is exactly 364 days younger than Tucker.  Meeting him for the first time was like looking at Tucker one year ago - which sort of brought me pangs of jealousy and of sorrow at the same time.  Jealousy was obvious that I wish Tucker still had the abilities that Matthew has; sorrow comes knowing what Matthew and his family will endure over the next year.  Not to mention both Dad's are named Dave, Tucker and Matthew onset seemed to happen at the same time and progress the same way!  But Caitlyn, Tori and Avery got along so well and it was absolutely a pleasure to have met the Veuger's and we treasure our new friendship.  In fact, we are going to fly out to B.C. next month (since we can only stay in Canada).

     I think that brings us up to speed, for now - things change so quickly in this house.  I can't believe that in one month Avery will have her first day of school - which Tucker should be doing as well - just another emotional day - happy for one, sad for the other!

     Hope everyone is enjoying their summer.

Friday, June 25th, 2010 ~

     Wow, I have actually added to a blog within a week - amazing.  I felt I must let everyone know that Dave, Tori, Avery, Tucker, our friend - Erin and I are packing up and leaving for a weeks deserved vacation tomorrow.  So, we won't be back until July 4th!  Yippee!  However, both Dave and I will be available by email to answer any question regarding the golf tournament on Friday, July 23rd - which is right around the corner.  It is going to be another great event that no one should miss.

      Hopefully, we will be having another family taking the same journey as us, with their son-Matthew.  They will stay with us for a couple of days for the tournament before they head to visit family.  They also have a daughter that is between the ages of Tori and Avery - so it should be a great visit.

     Tucker's new Cough Assist machine arrived yesterday, this is going to be interesting.  It has a mask (similar to an oxygen mask) that blows in positive air and then blows in negative air which forces Tucker to cough, then we quickly place the suction tube down his nose to suck out any phlegm, mucous, etc that he doesn't have the muscle to expel.  Perfect timing, considering he caught the cold that Dave brought into the house.  Anyways, I totally need to pack and clean and whatever else needs to be done.   Have a great week!

      Don't forget to register online for the tournament - or if you can't attend, perhaps you could provide a monetary donation or an item for the Silent Auction?

Friday, June 17th, 2010 ~

     First of all, I want to apologize for not keeping everyone posted regarding Tucker and since summer is just around the corner I wanted to send a quick update before people begin taking their vacations, spending time with families and friends.  I have no excuses or reasons for not updating my website - just feeling a bit more down as each day passes?  As per usual, although we are allotted 40 hours / week for nurses, I am lucky to get 16 or 24 hours.  I can't believe how difficult it is to get a nurse in here.  Which means, not much else gets done - not that it would get done any faster, just that if I wanted to I would have time to do it.  For example, on one of my recent face book posts I put, "I guess it's time to do laundry when I actually had to go out and buy the girls underwear!"  Welcome to my world.

     As if I didn't have enough going on... Dave and I celebrated our 7th Wedding Anniversary on May 17th.  Dinner at the Keg, home by 7pm - it was nice to go out together for a change.  Well, two hours later, I was having incredible pains in my stomach.  At 4am, I was dressed and ready to go to hospital - Dave convinced me to wait and see my doctor in the morning.  After a day of waiting, I was sent to ER at McMaster - I had appendicitis!  Admitted on Tuesday, May 18th; surgery on Friday, May 21st and discharged on Monday, May 24th - no lifting more than 10lbs for approximately 8-12weeks.  That means Tucker, his wheelchair, the girls, etc.  Once again, I can't be left alone with my children ;(  Luckily, Dave's and my mother - along with a dear friend, Erin, jumped in to help out.

Because I haven't updated in such a long time, instead of writing a novel - I'm going to bullet point things that have been going on:

•  I can't remember if I shared the news that after Tucker was denied skating at the local arena - we were contacted by Michael Gossack, an artist, of Cherry Hill Design (www.cherryhilldesign.ca).  He wanted to come out and paint Tucker a 'special theme room'.  Special is a complete understatement!  Just having the offer from someone to do this for Tucker is very touching - but the finished product is beautiful beyond words.  Please take a look at Tuckers brand new "Hockey Themed" bedroom - simply stunning.  If anyone wants information or recommendation please contact me (Michael was a perfectionist and each day he cleaned up before he left).
• Back in March, I was contacted by a mom who's 6 year old boy was having his 7th birthday.  He requested donations for Tucker - instead of gifts?  Totally incredible ;)  As a result $830.00 was donated to McMaster Children's Hospital - for Mitochondrial Disease Research.  I want to sent out a special "Thank you" to Ryan and his family:  Cindy (mom), Jamie (dad), big bro - Jack, l'il bro - Cooper and last but not least, his adorable sister - Reese.
• Due to the fact this post is so behind - I also want to extend my sympathies to Ryan and his family and their friends.  Ryan's dad - Jamie, was involved in a motor vehicle accident and died on Mother's Day - our prayers are with you guys.
• Also, thanks to the Hamilton PeeWee Cylcones "Skate with Tucker" on April 3rd, 2010 - they raised $3130.00 for McMaster Children's Hospital.  Awesome job guys!

Tuesday, April 6th, 2010 ~

     I'm not sure if it's weather related, or if it's one of those days were I go over and over the past 3+ years and continue hoping the doctors are wrong?  But last night we had a relatively 'new' friend over, who has only known of Tucker for the past 4 months or so.  We showed her some video clips of Tucker a year and more ago and she couldn't believe it.  I truly believe that unless you are closely involved with a family affected by a Mitochondrial Disease, you really don't know what goes on (on a day to day basis).  Not to mention the endless trips to the ER both before and after diagnosis - if they can give you a diagnosis as there are few Mito diseases that actually have a diagnosis/prognosis, many families are told by there specialists that the Mitochondria are affected to some extent - what that means?  No one knows - not even the experts.  Forget about getting diagnosed from your G.P. and sometimes even a pediatrician.  By no means do I want anyone to take offence to my comments - they are simply intended to inform you that awareness of Mitochondrial Disease is so limited it is frightening.  Yet, when you live through this journey - it's horrible watching your innocent child/ren go through their regressions, not to mention the battery of tests, genetic testing, biopsies, EMG's, EEG's, ECG's, surgeries, emergency trips to ER, etc.  The list is endless and because there is not much out there about Mito Disease, parents don't know what is happening next?  Tucker can have a great day today, and tomorrow be admitted to hospital.  It is frightening for the child and their families.

      I am so excited that Mito families we know have developed the first Canadian Mito website (www.mitocanda.org).  We need the awareness of the disease to raise funds for the research to assist doctors to find treatments and cures - I CAN NOT STRESS THIS ENOUGH!

      Today, I saw two posts on my face book that I want to share with you... please take the time to view them:  video, news article.  I cried through the video, watching children that I didn't even know, go through the many procedures Tucker has had to endure in his short time... no child should have to go through this.  Which is why if I can make Tucker smile, or give him and our girls memories to cherish, I will do whatever I can.

      Again, I want to thank everyone for their support and donations that continue to help my fight to find a treatment or a cure for Tucker's sake.

Sunday, April 4th, 2010 ~

    WOW - what an incredible weekend!  Friday we had dinner at my cousin's house with my mom's side of the family, always a blast - 22 mouths for dinner.  Not to mention the gorgeous weather we had starting off the long weekend.  Then yesterday we arrived at around 12:20pm at COPPS Coliseum for the Skate with Tucker fundraiser put on by the Hamilton Pee Wee Cylcones.  What a nice bunch of boys, they took turns skating around the rink with Tucker - of course Tucker was in his glory, flirting with the girls and 'just hanging' with the boys.  I took lots of photos of family and friends that arrived to take part.  We returned home for a break and lunch, had a 'rest' not long enough, then back to COPPS we went to watch the Hamilton Bull Dog game vs. Rochester Americans.  We got to sit on the Hickory Dickory Deck which was fabulous - Muskoka chairs, wings (beer for those that drink it), family and friends, what an amazing evening.  It was a little difficult to keep attention on the game but it was great hockey.  Unfortunately, the Bull Dogs lost.  The had a 5 minute over time - still tied which resulted in a shoot out - final score 3-4 ;(  But, it was great to see the guys, Bruiser and many of the Cylcone team members came to visit Tucker on the deck.  The girls were all candied up - thankfully they crashed quickly.

     Oh, I forgot to mention about when we initially arrived at the Skate with Tucker... there were 3 huge stuffed bunnies (as big as Tucker - no lie), with chocolate rabbits, chocolates, etc.  Dave received a Montreal Canadians Flag and will get tickets to see the Toronto Maple Leafs vs. the Montreal Canadians next season - Dave was blown away.  I received a lovely basket with some much needed 'beautifying products'  (Plus, I get to go to the game with Dave ;)

     The Easter bunny arrived early today and the girls and Tucker had fun looking for the 'hidden' eggs.  We spent the morning at the park with the kids, Jersey and my Mom.

     Taking a break and then heading out to Dave's sisters for Easter dinner there, yummy!  At least there will be no added mess to my house.

      Congratulations to Dundas!  They won Hockeyville - $100,000 in upgrades to the existing arena and they will host be hosting a pre-season game next year - amazing.   My nephews are over the moon!

Thursday, April 1st, 2010 ~

     I was going to April Fools everyone, but seriously - how can I do that??  So instead, I will wish you all a great day and an even better long weekend!

     We have a jam packed weekend planned, starting tomorrow - dinner with my side of the family.  Saturday, I am trying to get the kids to some local Easter Egg Hunt, then we have the skate-a-thon at 12:30pm, then a break at home then returning to COPPS for the Hamilton Bull Dog game.  Sunday we have dinner with Dave's side of the family and Monday will be a day of rest!  Enjoy spending your time with family and friends - the weather is suppose to be nice as well - welcome to spring!

     If you have nothing to do on Saturday, I have two opportunities for you and your families to have some family fun:  the Skate-A-Thon at Copps Coliseum from 12:30-1:30pm, (donations requested), our family will be there and Tucker will be on the ice.  The Hamilton Bull Dog game at 7pm vs the Rochester Americans... we will be the group sitting on the Hickory Dickory Deck - thanks to the Bull Dogs for that!  Tickets are for sale $10.00 each and all proceeds from both events will go to Tucker's cause.  Hope to see you there!

     Have a "Hoppy Easter" everyone!

Tuesday, March 30th, 2010 ~

      I am surprised, I actually made two entries this month, woo hoo!

      I want to congratulate the Mito Mom's, Mito Patients, family, friends and supporters for starting the first Canadian Mitochondrial Disease website:  www.mitocanada.org  It looks amazing.

      Well, I am sort of stepping into the future. Last year, it was a little hectic at my end trying to get everything organized. So, Dave and I came up with an idea to help take away some of the stress - we've signed up with Sell Your Events.com for Event Marketing. This way we can get registrations online and it will go into an excel program at my end. You can pay either by cheque with a $2.25 service fee, or online through Paypal. You do not require a Paypal account to pay online. Again, a percentage goes to Paypal for the use of their service, along with the service fee for Sell Your Events.com. We did comparison pricing and Sell Your Events.com was the most flexible with this being a charity event. So you can click the link to register! See you at the tournament!  So, check your inboxes for the new email regarding this convenience to register.

      Tuesday, Tucker had an appointment with Dr. T. and I am pleased to say, he is doing well and hanging in there - that's my boy, a fighter like his MOM and a lover like his Dad.  NOT to be confused how I feel with every little sniffle, cough, choking episode (which has become more frequent resulting in use of the suction machine and the need for it to be taken wherever Tucker is).

      Jersey, our new pup, is adjusting quite well to family life with us.  A little too much with the cat... she tends to grab Jitters and shake him like a cat shakes a mouse to die.  Definitely got to get that to stop, but Jitters is such a $#!t disturber and keeps antagonizing her.

      I received an email from a mom - Cindy.  Her son - Ryan, just had his 7th birthday, and instead of gifts he asked for donations for Tucker - I was yet again speechless!  He raised over $830.00, which is going to McMaster Children's Hospital to the Neuromuscular Disorder Clinic for Mito Disease research (which from now on will be referred to as Tucker's Cause - it's just so repetitive and I think by now, everyone knows where the money goes.).  I would like to say a special "Thank You, Ryan - it was very generous and considerate of you!"  I look forward to meeting you and your family next week.

Thursday, March 18th, 2010 ~

     The puppy - Jersey has been a fabulous addition to our family.  It only took our cat "Jitters" one and a half days to take to the new pup and now they are the best of friends.  Tucker, Tori and Avery are awestruck by the puppy - except when she nips (those puppy teeth are incredibly sharp).  Sorry about not posting that the Skate-a-Thon for March 13th, was changed to April 3rd, 2010 - there were more than a few hurdles to overcome; hopefully, all has been smoothed out and we are looking forward to another fun filled family event. 

      Speaking about "Jersey", last week while I was changing Tucker's diaper - he had a hold of his g-tube.  Jersey came too close while he was lying on the floor, Tucker flailed his arm and pulled the tube out.  Totally bad time timing.  I was trying to get him ready for his appointment with his Respiroligist.  So, as I inserted his g-tube, I wasn't able to draw up stomach contents, so I was doubting myself that it was in the right place?  Which translates into an ER visit - aagh.  While enroute I attempted to contact the doctor's nurse to tell her what happened and that we had to stop at ER first.  I was then told that there was a car fire in the parking lot and people weren't being allowed in?  Now what?  So, I continue and it was very slow coming off the highway and getting to McMaster, but once I got there, there was no problem with parking and going to the ER - thankfully.  The nurse, Rose-Francis, was wonderful and met me down in the ER and whisked us away... because Tucker is on the top medications and the top dosages for his severe reflux, we have no other option other than to have a GJ Tube inserted into his duodenum, opposed to into the stomach.  This appointment was already in the works and since his tube was out now, this was the perfect time (or so I had thought).  I was told it would take 15-20 minutes for the procedure, it was painless and didn't require any sedation.  NOT.  It lasted nearly two hours, Tucker was vomiting copious amounts of blood and required suction and then he 'zoned' out?  To say that I was a little freaked out was an understatement.  I have seen Tucker go through some terrible things, but seeing your child in pain, knowing you can't do anything other than hold their hand totally sucks.  Before leaving, the doctor told me, "This should do."  I was not convinced and definitely not happy with this doctor - there were no bedside manners either.  When I was walking with Rose-Francis, I told her that Tucker still wasn't himself and how disappointed I was with the doctor.  (Rose-Francis is a wonderful nurse, extremely helpful and great at explaining medical things in lingo I understand.)  We concluded that Tucker had just been through a lot, and maybe it was due to all of the manipulation during the procedure?  I took Tucker home, he continued whimpering and gagging - I was starting to get nervous.  Dave ended up leaving work , yet again, as he could hear Tucker's whimpering through the phone (an although we don't know what was medically wrong, something was definitely wrong.)  Dave came home and in less than 5 minutes, Tucker vomited want looked like seaweed (boiled spinach)?  Rose-Francis called shortly thereafter to check-up on Tucker, we told her want had happened and we were instructed to return to McMaster.  Here we go.  After trying to explain the 'right' colour of green to the resident/intern, an x-ray and 6 hours, we were told that it was probably a one time thing and we could go home?  Which we did, what a long, stressful day.  Dave and I were wakened by Tucker's high pitch scream and gagging coming through the monitor.  We get to his room to find him and the bed covered in the same 'green' algae/seaweed crap as the night before.  I call and speak to the on call Pediatrician - back to McMaster we go.  After we arrive, and I finally have a moment to settle, I notice that Tucker's tube is out (there is a 'loop' of tube that is supposed to hold the tube on the inside of the stomach - but is was outside his body) - this can't be good?  We were than told we would have to see Interventional Radiology (where it was put in) - but they didn't open until 8am - it was only 6:30am... aagh!  As luck would have it, the doctors noticed that on the x-ray taking the night before, there was a kink in the tube.  We were sent to Interventional Radiology before noon - and I prayed that we wouldn't get the same doctor as the one who had inserted it the day before - no such luck:(  I was upset enough for both Tucker and I.  Well, he came and spoke to Dave and I and he was a completely different guy?  I had prepared Dave in advance, and this doctor made a liar out of me - which was to Tucker's benefit.  This time the procedure lasted 15 minutes, no bleeding no suction, nothing.  Tucker got off the table and was immediately himself - why don't doctor's listen.  I am with him the most, I know, I am Dr. MOM!

     That pretty much sums up March.  It's great to have good weather to take walks and get Tucker outside.  Once again, our nursing schedule is pretty screwed up and we've been without nurses more than with one.

     We are looking forward to the Skate-a-Thon and a Mito Skate with other Mito families - which was postponed to due a couple of unforeseen complications - I will get the date out as soon as I get it.  Sorry.

Friday, February 26th, 2010 ~

     Well, after much discussion, Dave and I decided to get another puppy.  I know you all are going to think we are absolutely crazy - you need not tell us, we know.  But I have always had a dog, and miss not having one around.  We have the cat - Jitters, and believe me - he is the best, most friendly cat one will ever meet - but it is not the same.  Not to mention, although I know and the doctors keep telling me I need to exercise to help with all of the stress I am under, a puppy will force me to get outside and walk.  We don't want to wait to get a puppy - we don't want the girls to think it's a replacement, as nothing could ever replace Tucker - but you never know what kids think.  This way the puppy will be our entire family's pet and there will be pictures of Tucker and the new puppy - which by the way, we have already seen and picked out.  The puppy's mother was a pure bred Golden Labrador and her father was a pure bred Golden Retriever.  The were bred on purpose and you should see the litter of 9 pups.  The are incredibly adorable!  The mom is beautiful and has such a wonderful temperament so we hope for the same with our pup.  There was only one pup left, a female - which is what we were looking for, we met her yesterday and we named her, "Jersey".  Dave and I were going over names - it was as difficult as picking out baby names!  I started thinking about things that we enjoy as a family, but the name "Disney" for a dog just didn't fit.  Then I thought of how much we all enjoy hockey.  "Puck" was not a name for a dog, "Sticks" could fit, if it was a male dog, then I thought of "Jersey" - it worked, we both loved it and when we met her - it suits her as well.  We also made sure that the girls could say, "Jersey".  Tori even took the picture of Jersey to school and daycare to show her and Avery's friends - they are ecstatic about the new puppy.  The hard part is that they have to wait at least another 9 days before we can pick her up - it's hard for me as well.  The girls have not stopped asking for a dog over the past year and a half - it's time.

    Totally off topic, the Hamilton Jr. Red Wings had the first of the seven game series last night against New Market Hurricanes.  Unfortunately, they lost 2-1 in overtime.  However, they play tomorrow night at the Dave Andreychuk Arena - 25 Hester Street, Hamilton (just off of Upper James).  I hope you can find the time to come out and support them - they are a terrific team!  Hope to see you there!

Wednesday, February 24th, 2010 ~

     Today was pretty uneventful, until dinner time that is.  Completely out of the blue, Avery said, "Mommy, what's going to happen to Tucker?"  I asked her what she meant?  I did know what she meant - I was just caught off guard by her direct question, especially without any leading discussion or incident.  Avery repeated the question the exact same way as the first time and I sat in the chair beside her and asked her, "You know that Tucker has a disease, Leigh's Syndrome, right?"  She shook her head, "Yes".  I continued to tell her that we don't know when, but because of this disease Tucker will die and go to heaven.  Avery replied, "I don't want him to die or go to heaven, I want him to stay with us."  I gave her a hug and concurred that we all want him to stay with us.  I reminded her and Tori that the best thing we can do right now is be happy, tell Tucker as much as possible how much we love him, take lots of pictures and make lots of memories.  Dave and I explained that we will never forget Tucker and he will always be in our hearts.  Let me tell you, that no matter how many times I have told Tori and Avery (or complete strangers), you would think it would get easier, but it doesn't - it only brings up all of the emotions we've been feeling since August 15th, 2008 - the day we heard the most devastating news I have ever received; emotions that we try to keep suppressed to make certain that we are providing the kids with a 'happy' home, emotions that I have learned to hide while explaining it yet again - only to crumble once I am alone.  Until I am again able to gather myself and continue.

Tuesday, February 23rd, 2010 ~

     Oh wow, it's been a while and I have lots to say, sorry!  Friday, February 12th, was Tori's 5th birthday - I've heard that with children, time really flies - but this is crazy.  Unfortunately, Tori and Avery were sick with the most recent 'bug' floating around and spent Thursday to Friday on the toilet and vomiting.  I felt so bad for Tori as we had booked her party at an indoor playground; but I was so proud of her at around 4:30am when Tori told me, "I guess you'll have to call my friends and tell them that I won't be at my party today."  Ah, what a big girl.  We decided to cancel the party and rescheduled it for February 19th.  The girls were feeling much better on the 13th, so we decided to have our "Family Day" on Saturday, as Dave was working on Monday.  We stayed in our p.j's, played games and watched the Olympics.  I ordered Chinese food and all was fine until early evening - Dave was sick, boy was he sick - aghh!  Thankfully, this 'bug' only seems to last 8-18 hours.  Dave was sleeping in and at 12:30pm on Sunday, Tucker started vomiting/diarrhea?  Here we go again.  I kept the girls away from the boys, then I went out to get some Pedialyte for Tucker and Gatorade for Dave while.  I'm not sure if it was psychological or I had also caught the 'bug', but I wasn't feeling that great.   I took my temp - 38.4, confirmed, I was officially sick.  Go figure, this was the 3rd attempt Dave and I had made to get a sitter for the girls a nurse for Tucker and yet again it was a bust.  Happy Valentines Day!  I was in bed at 3:30pm until 2pm on Monday.  For the next day, I was just really achy. Dave still wasn't his best either; although some symptoms lessened - you just felt awful.  I hope no one else gets to experience this.

    The rest of the week was pretty low key, getting ready to gear up for the weekend.  We celebrated Tori's birthday at the indoor playground (they totally make the party experience run smoothly and low stress - exactly what I need), we arrived home just before 9pm, put the kids and us to bed.  We woke up late on Saturday, Avery and Dave butting heads and Dave told her she couldn't go to the party and she would spend the day in her room.  Totally over the top and not appropriate punishment for the crime or a 3 year old - but Dave is learning.  I told Tori to get her boots and coat on and Dave said, "I haven't showered yet?"  I said, "You just told Avery that she's staying home?  You've got to stick to your threats or she'll continue to run you."  So away Tori and I went back to the same indoor playground we had spent 3 hours at the night before.  Thankfully, it is the best one in town - I feel.  After an hour, I felt so bad for Avery, so I called Dave and we decided that she has learnt her lesson that Mommy will leave and she will miss out, so I went back and picked up Avery, Tucker and Dave.  It turned out pretty good.  Although Tucker can't participate, he is able to hear the kids, the joy in their voices and 'flirt' with the Moms. 

     We were supposed to celebrate Tori's birthday with the family later, but Uncle Joe had caught the 'bug', and since he and Dave's Mom live together I didn't want to risk it coming back into our house.  Also, our nephews made it into the playoffs - so they weren't able to make it.  Luckily, my Mom came down.  She and the girls had a girl night and Tucker, Dave and I went to watch the Hamilton Jr. Red Wings cream Toronto 5-0 - beautiful boys, beautiful!  Dave worked Sunday so I just hung out with Tucker, the girls and my Mom.  Last night, could have potentially been the end of the season for the Jr. Red Wings - we couldn't let them down, so snow storm or not, we packed up the family and away we went.  It was another beauty!  They stomped all over Toronto 8-2 advancing to the next round in the series.  The next home game is Saturday, February 27th, 2010 against New Market at the Dave Andreychuk arena on Hester Street in Hamilton - so come out and cheer on a spectacular team - it's great hockey!

     This brings us up to today.  I have been eluding to something I couldn't discuss over the past five months and now that the case is 'closed' I want to share.  Do NOT blindly trust anyone that interacts with your child.  Set up hidden camera's or not even hidden - let them know that you are watching them, then maybe nothing will happen.  We had a nurse that we trusted to work with Tucker.  After a couple of months, it came to our attention that a lot of medication had gone missing over previous months.  There were other 'incident's' that had transpired, but on an individual basis didn't raise any flags.  Of course on hind sight they added up to major red flags.  Dave and I could prove that she stole Tucker's medications and although we can only speculate that she was overdosing Tucker - it can't be proven.  But, those who knew Tucker before, during and after he was in her care - there is NO DOUBT in our minds.  She is so cunning, I actually believe she doesn't think she did anything wrong - which leads me to suspect she's been doing this for years, as someone who has been a RPN for 30+ years doesn't just start doing this now.  Anyways, due to lack of research about Leigh's Syndrome and Mito diseases in general, the Medical 'panel' said it COULD be a result of overdosing or it COULD be a result of his disease?  No one could possibly know how I feel right now, learning that something like this happened to my son right under my nose!.  Tucker, I am so sorry.  I only wish we had the camera's to prove it.  All I can say to her - and believe me - SHE KNOWS WHO SHE IS - is that I hope you take this investigation as a warning.  I wouldn't want anyone else to get harmed or worse.  I can't believe how helpless I feel, yet again and how angered I am that this could even happen.  Although the police have closed their investigation there is a little comfort knowing that it is still under investigation with the Ontario College of Nurses!

Thursday, February 4th, 2010 ~

     First of all, I need to apologize for all of the emails I have not responded to... out computer died.  On Monday, we went out and purchased another, ugh!  So, I have been trying to set up the new computer; however, it's been difficult due to no nursing yesterday and on Tuesday, there was a mix-up.  So, I will try to get to them as soon as I can - as it is also 'tax' preparation month.

     I know millions of people have seen the news (either print or on TV) about Tucker, but I think I need to clarify some things.  I do NOT blame the employee at the North Wentworth Arena, in essence it turned out to be a positive, "A Blessing in Disguise".  If anyone/organization is to blame, it is the City of Hamilton regarding their training policies.  YES, I have received apologies from the City of Hamilton; in fact, Councillor Duvall came out to the Hamilton Jr. Hawks game and presented Tucker with some items:  baseball cap (autographed by Mayor Fred Eisenberger), scarf, teddy bar and sweatshirt and a genuine heartfelt apology.  I won't forget the incident, but so much good came out of it and the City of Hamilton has assured me that they will be making changes to ensure this doesn't happen to anyone else.

       On Sunday, January 31st, Tucker had a blast dropping the puck at the Hamilton Jr. Hawks game.  It was great hockey, thank you inviting us to the game and for the autographed photo of the team; hopefully, next time we can drag our daughters out so they know that "Girls play hockey, too!".

      This week, Tori, Avery, Tucker, Dave and I have been knocked off schedule.  That will teach us for staying out late on Monday night!  But what a fabulous night it was!  The Hamilton Red Wings (16-20year olds) made me cry.  When the story initially came out about Tucker not being allowed on the ice, Erin Dancey contacted me.  The team wanted to include Tucker.  Unbeknownst to me, apparently the players had gone out in the community and handed out flyers at gas stations, etc., UNBELIEVABLE!  On February 1st, they made Tucker an honourary team captain with a hoodie, a new team jersey and autographed stick.  Nancy Rizzi (10 years old) volunteered to sing the Canadian Anthem before the game.  This was her very first solo, she has an amazing voice - unfortunately, there was a technical malfunction and not everyone had the opportunity to hear her sing, but I did, and I think the players on the ice did.  Thank you, Nancy!  Janet Rizzi, Nancy's mom, gave me a gift certificate to her spa "La Petite Spa".  IF only you knew how much I love my spa days!!  It was a perfect and very much appreciated gift - thank you!  That night, we met so many people for the first time, yet I felt as though I had already known them.  Dave and I were not scheduled to say a speech, but I felt it necessary.  This is not verbatim but it will give you the gist of what I said:  "Since Tucker was turned away from the arena, so much has transpired - especially from the hockey community.  I know they are part of a team and understand what it may have felt like if one of them had been turned away.  I know Tucker will never play hockey, and we don't know whether or not our daughters:  Tori & Avery will play, but today, I feel like I have been given the opportunity to be a hockey Mom, if only for a little while.  Thank you!"  I was interviewed by AM900, and at intermission I was on air, but I don't know for what station, oops?  It was a crazy good night.  Actually, another Mito Mom and her son - J.R., drove down from Campbellford to meet Tucker.  How overwhelming is that.  Her daughter passed away from an unknown Mitochondrial Disease and she wanted to meet Tucker - what an honour!  It was nice meeting you, Sherry.

      The 50/50 draw along with donations were donated to the Neuromuscular Clinic at McMaster Children's Hospital for Mitochondrial Disease Research.  I will let you know when I have the total.  From the bottom of my heart, Zac, Brad and the rest of the Hamilton Red Wings, THANK YOU ALL for the memory - it will be cherished!   We definitely want to come out and watch another game, soon!

Friday, January 28th, 2010 ~

     What a week, I thought it would die down a bit, nope.  But it is all good - this incident has totally turned out to be a blessing in disguise.  So many individuals, groups, etc have contacted me, some locally and others as far away as Italy.  It's been amazing.  Some want to say thank you for sharing our story and making them aware that life can be short and to make the most of it, others want to help - all of it has been positive as the word is out about this horrible disease.  I don't think that there is anyone who hasn't heard this story - unless they leave under a rock.  The media has been fabulous getting the story out there.  As a result, some fundraisers have been organized:

-January 30th, we will be attending the Hamilton Hawks afternoon game at 1pm.  Tucker has been asked to come out to drop the puck.

- February 1st, we will be attending the Hamilton Red Wings game where a 10 year old girl has volunteered to sing the National Anthem and Tucker will be made 'honorary' team member and perform the puck drop.  There will also be a 50/50 draw with proceeds being donated to McMaster Children's Hospital to the Neuromuscular Clinic for Mitochondrial Disease Research.

-March 13th, the Hamilton Cyclones have organized a "Skate-A-Thon" at COPPS Coliseum.  Although it started with the Cyclones, there has been much collaboration with so many other teams of the Hamilton Hub Association - including the Hamilton Bull Dogs.  Stay tuned for upcoming information about this event - you will not want to miss being a part of this!

Tucker has been invited to skate at some area rinks, we would like to extend that invitation to anyone or family affected by a Mito Disease.  If you are a patient of Dr. Tarnopolsky's, you should be receiving a letter from his office to contact me so we can arrange a date to get together.  Hey, if you don't skate, don't worry, come out if only to meet other families and network.  I was hoping for a Sunday afternoon around 3pm?  That way it's not too late, but no one is rushed?  Let me know what you think.  Contact me at:  kari@tuckerstime.com.

Tuesday, January 26th, 2010 ~  click HERE to see video at ACC!

     Where do I begin?  It was an outstanding day, a day that I will never forget!  We arrived at the Air Canada Centre at 10am, Dave, Tucker, Avery, Tori along with our brother-in-law John and our nephews:  Jackson & Daniel.  We were met by Jason S. and suddenly a couple of reporters walk by and say, "I'll see you downstairs"?  I'm a little baffled as I was aware that the Hamilton Spectator was coming to do a follow-up, but I hadn't heard of anything else?  Anyways, Carlton appears and the kids are given 'gift bags', they were thrilled.  I took a couple of photos, then Tucker received an additional bag?  It contained a Toronto Maple Leaf warm-up suit, a fleece hat that looks like a helmet and a brand new leafs jersey!  Totally unexpected, but very nice.  We are led downstairs as practice was about to begin, when we were told that Dave, Tucker and I could go with Jason and the girls went with their uncle and cousins out to the stands.  We were able to stand in the hall between the locker room and where the team enters the arena to get on the ice.  We have been there before - but not with all of the media and we were not this close to the leafs.  The players came out, grabbed a sharpie and signed Tucker's brand new TML jersey.  Some spoke to Tucker and Dave while they signed - I was snapping photos and video.  Then I saw Tomas Kaberle ;)  He had to walk right by me to get to the ice - totally yummy!  The guys were so casual about Tucker being there especially with all of the media.  It was really nice to see them 'behind the scenes' as opposed to watching them while they played.  After the autographs, we were led out to the stands where we were greeted by the 'paparazzi'.  Neither of us had any idea that all of the media would be there.  For the next two hours of practice, Dave and I were interviewed.  We missed watching both the Leafs and the Kings warm-up.  Oh well, my promise to Tucker is coming to fruition - which is very important to me.  That and Tori, Avery and Tucker's happiness and well-being.  I could see that they were all having a blast - especially Tucker and Dave.  I don't think it was possible to wipe the smile of Dave's face - it was permanent.  Once the Kings were finished their practice, it was Tucker's turn.  Initially, I wasn't sure how he'd react?  As soon as we took off his mittens and he was doing laps around the ice with his Dad - the smiled beamed.  He is a boy without words, but it isn't difficult to see how happy he was.  Tori was skating around the rink and Avery refused to put on her skates.  However, both of the girls fell in love with 'Carlton'.  Avery did get out on the ice with her boots and pushed Tucker for a bit.  It was surreal.  A dream come true for Dad and a proud moment for me!  Words can't express the joy I feel today.  We were treated as well as celebrities on the red carpet, not to mention all of the media (paparazzi).  We had an amazing time at the ACC!  Thanks Jason and Dave - you guys deserve a raise.  I know there were many more involved in creating this memory and I am sorry if I have forgotten your names - there were so many people and they all treated us like 'royalty', thank you!  I hope we get an opportunity to see all of the players at the Easter Seals skate on the 7th - maybe even Tomas??  I have some photos and video that I want to share with you all, please check back soon.

Sunday, January 24th, 2010 ~

     I'm sitting here trying to think of where to begin, but I'm speechless!  Anyone who knows me, know that it difficult to believe.  Lately, I have been at quite a low point.  I have been going through a lot of family photos, videos, etc., and it's very upsetting to see my son slowly deteriorating.  Although, Avery hasn't really asked any questions, I know through her actions that she realizes 'something'.  Tori seems to go in waves, times where it seems she has forgotten (or at least not thinking about it) and other times she has endless questions, questions that I have answered a hundred times - I think she is hoping for a different answer?  Dave and I are okay, I know we handle things differently and we don't seem to discuss the 'elephant' in the room unless I bring it up.  I am well aware of time continuing and it frightens me.  I am constantly trying to think of things that we can do as a family, places nearby we can go, memories that we can create.  It is so hard and I want to make sure we get it all in, but a lot of it depends on Tucker.  We try to make sure it benefits Tori, Avery & Tucker equally as we don't want to do things without the girls, or do things without Tucker.

     So, to say that events that began last Thursday haven't had a mood 'lifting' affect would be an understatement.  It gives me something to look forward to, with the family and the best of it, my promise to Tucker is being kept.  Awareness of this disease is spreading like wildfire and the chain reaction is also raising funds to aid in Mitochondrial Disease Research at McMaster Children's Hospital.  

     I guess I'll start last Wednesday, where it all began.  Joanna Frketich, a reporter with the Hamilton Spectator, called me to ask if I was aware of the announcement of Dr. Mark Tarnopolsky being the first Research Chair for Neuromuscular Disorders?  I advised that I was and that my family would be attending that evening.  She asked what I thought of the announcement, and mentioned that her coworker was trying to find out who the 'family' guest speaker was going to be?  I told her that it was me.  After completing her 'interview', Joanna asked how Tucker was doing and what we had been doing with him?  So, as all of you have read, I explained what happened on the previous Sunday at the arena.  She asked if I minded her writing a story about the incident and I said, "No, I want to bring attention to the additional challenges we face as well as other families in similar situations."

     Well, the ball took off from there and it has gained so much momentum!  It truly has been a positive overwhelming experience.

• The Hamilton Cyclones coach, Dave Landry, has contacted me, telling me that the team (11 year olds) have come to him and asked to do 'something' for Tucker.  The have initiated a "Skate-a-Thon" fundraiser.  Stay tuned for further details.
• There was a Hamiltonian, Dave S. (I'm not sure if he wants is name used or if he wants to remain anonymous) who wanted to rent out COPPS Coliseum for Tucker.  As a result, the Hamilton Cyclones (along with the Hamilton Hub Peewee Association) and Dave S. have combined their efforts and I believe the Skate-a-Thon Fundraiser will be held at COPPS Coliseum - AMAZING!!!
• A representative of the Hamilton Red Wings (again, I'm not sure if I can use name), has contacted me and has made arrangements for Tucker to drop the puck at their home game on February 1st.  They've also made Tucker and honorary teammate and the proceeds from their 50/50 draw will be donated to Mitochondrial Disease Research at McMaster Children's Hospital.  So, come out and support the Hamilton Red Wings and Mito Disease research!
• We were also contacted by Toronto Maple Leaf Sports and Entertainment, Tucker, Avery, Tori, Dave and I were invited to attend their practice and hopefully have a bit of a 'meet and greet'.  After the practice, Dave, Tucker, Tori and Avery are going to skate on the ACC ice!  UNBELIEVABLE!!  Yes, I know I have skates, but I have limitations; since I haven't skated since university/high school... I think it's in everybody's best interest if I take the video and camera footage.
• Last, but definitely not least, we have received offers from Hamiltonians regarding various ice time for our family.  Well, I've asked if instead of it just being 'our family' would they mind if we included other families affected by 'Mito' - and it's all good.  So, I went to Dr. T's office and he is going to send out a letter to the other families to contact me so we can arrange a date/time for this skate - isn't that FANTASTIC!

      I hope Tucker likes being on the ice!  We really don't know as we haven't been as yet.  I know that there has been speculations whether or not Tucker understands about not being given the opportunity to go on the ice?  YES, someone actually called and asked me - I was appalled. Well, Tucker does understand quite a bit.  Besides, if he doesn't, what does that really matter?  We are creating memories for the girls, Tucker and us.  Tucker and Dave will not have many father and son opportunities so both of them should get to experience whatever they can now.  Also, Tucker does 'feel', he has emotions - he feels the LOVE that Tori, Avery, Dave and I give him - and that's the most important thing.  So, I hope the person who had the gull to ask reads this post - SHAME on you, your attitude and your ignorance!

      I don't want to end this post on a negative.  To everyone else, our family, our friends, our community and our supporters, I wish I could find some way to say exactly how I feel as a simple "THANK YOU" just doesn't seem to do it.  We greatly appreciate everything that everyone has done, prayers included!

      I have had no choice but to update a lot of the website.  Please check it all out -even if you have as it has been brought to my attention some of the links didn't work either?  So, I have tried to go through everything and get it all up and working.  I seem to have trouble with videos?  If you try something and it doesn't work, please email me. 

Thursday, January 21st, 2010 ~

     Today, I got a taste of what Grand Central Station must be like.  The emails, the phone calls - OMG.  I'll start with last night.  I knew the 'Ceremony' was from 4:30-5:30pm followed by a cocktail reception between 5:30-6:30pm.  However, I did not know what I was getting myself into.  First of all, Tori and Avery were having a play date that was prearranged from 1-3pm.  At 3pm, I had still not showered, so I called and asked if I could pick up the girls at 3:30pm, after I showered?  No problem, except that once in the shower I had a revelation.  We were supposed to meet a member from the Foundation at 4:10pm, to escort us to the Ceremony.  OH NO!  I jumped out of the shower, and asked Kerri if she wouldn't mind bringing the girls across the street and I would run up to meet them.  No problem.  Dave dressed Tucker in the clothes I had left out (dress shirt, pants, vest and the cutest tie - Christmas outfit); Dave jumped into the shower, I tried to dress the girls.  I had prepared them in the morning that today was a 'special day', a day where it's agreed that Mommy picks out the outfits and gets to do their hair the way I want - kind of like 'picture day'.  The girls are totally hip with this as any other day, I let them be themselves.  Not last night.  At daycare they had done some face painting, of all days?  Avery was devastated that I had washed this huge blue/red heart that had smeared all over her face from playing.  Tori was upset and crying about her shirt 'tickling' her.  So, I let her change shirts and bribed Avery with buying her her very own face paints.  Next fight, hair... seriously, both of them were in tears the entire time.  We quickly loaded up the van and arrived at McMaster about 4:14pm, not too bad.  We met up with Parker and he escorted us to the Ceremony, along with other attendees we ran into while on our way.  I was getting introduced to names I see on mailings we receive, or names I've read about in the paper:   Pearl F. Veenema, President & CEO Hamilton Health Sciences Foundation, Dr. Peter Fitzgerald President McMaster Children's Hospital (who has actually seen Tucker in ER a time or two), Agnes Bonger, Senior Public Relations Specialist, Marg Jones (from The Foundation), Murray Martin, President and CEO of Hamilton Health Sciences plus many others.  Once we actually arrived in the Atrium, my nerves got the best of me and many names of the people I met and spoke with, went right out the window.  Sorry everyone, the one thing I can say is that it was an honour to be asked to speak at this Celebration and a pleasure to be in a room with so many people who have and still find ways to save lives and make a difference. Thanks for the opportunity!

     To say that Joanna Frketich's article, "Dying boy in wheelchair barred from public skate" didn't receive attention is an understatement.  My blackberry email signal and phone continued to ring off the hook until after 5pm tonight.  The support is overwhelming.  Early on a received a call from a hockey coach, whose 11 year old players and parents approached him to get involved, as a result, we've been offered ice time and they are planning a fundraising event for Tucker (which will be donated to McMaster Children's Hospital Neuromuscular Clinic).  I don't want to say too much as it is early, but stay tuned.  We had three other invitations for family skates - but I haven't been able to return the messages as there was no 'down' time today.  I want to say, "Thank you" to everyone and anyone who read this article and realized it was wrong.  All I really wanted was to make people aware that our family as well as countless other families and individuals face so many challenges/barriers on a daily basis, they don't always see the ones they may take for granted, like a simple 'family skate.'  I think a lot of challenges begin because of the 'unknown', if people just took a minute to ask - they'd be informed and realize Ontarians with Disabilities just want the same opportunities but require a few 'adaptations' in most cases.

     All of the phone calls and emails brought a little light into my day today, as it raised more awareness about Tucker and his horrible disease.  Which provides me with the hope that more awareness in turn will raise more funds to help researchers find a treatment and hopefully a cure.  Thanks again!

Wednesday, January 20th, 2010 ~

     I'm feeling a little nervous today.  My family was invited to a ceremony announcing Dr. Mark Tarnopolsky as the first Research Chair of the Neuromuscular Clinic.  Last Friday, I was asked by the Foundation if I would give a little speech and I said yes.  What was I thinking?  I can't even keep up with daily chores:  laundry, banking, cleaning, etc.  Definitely too late to back out now.  Besides, Dr. T has done so much for us.  I guess we'll see what happens?

     Just after lunch, Joanna Frketich calls me to ask me for some words regarding McMaster's announcement of Dr. T.  I explained how ironic that was considering I would be speaking at the celebration?  After I speaking about Mark, we briefly discussed the upcoming Tucker's Time 2nd Annual Charity Golf Tournament.  Then Joanna asks how Tucker is and what have we been doing with him.  She definitely got more than she bargained for.  I told her all about Sunday's incident.  She was as appalled as I was, but I had a few days to calm down.  Although I really wanted to file a lawsuit - I'm not that kind of person.  Through this journey I have learned other than our family and friends one of the most precious things in life is TIME and I'll never get it back so why waste it?  Yeah, yeah, practice what I preach, but with lack of sleep and the emotional toll this journey takes, I can only handle life a minute at a time right now.  Anyways,  Joanna asked if I would mind if she printed the story?  I said go for it.  The more publicity, the more awareness which could spiral into more fundraising which brings us so much closer to a treatment and hopefully a cure.  I can't wait to read the article!

Tuesday, January 19th, 2010 ~

     Blah humbug.  Again, I don't want to get out of bed, don't want to get dressed, nothing.  But I awaked to Dave fighting with the girls to get dressed.  Thankfully, the nurse was here.  I stumble out of bed, only able to open one eye.  Tori's asking where her clothes are and I tell her the same thing I've told her for nearly a week, I haven't done the laundry, I'll get it done today.  The girls get dressed and Dave takes them to school and daycare.  Dave comes home we talk about his shift, my night with the kids, etc.  I know I have a counseling appointment at 11am, but I don't want to leave the house.  I ask Dave to help me think of any excuse not to go, but he's no help and says that I should go, and since it's 10:45am it would be rude of me to cancel now.  I through on my daily attire consisting of sweats and a top, throw my hair in a ponytail and away I go.  I still feel blah when I arrive and I even told her I was trying to think of an excuse to cancel.  I told her that about a week ago, two of my friends called to make arrangements to go out and they know that Dave is off today, I have no desire to go out and have purposely avoided their phone calls for the whole weekend.  She explains the importance of getting out even if it's for a half hour.  I'm not convinced.  I return home, get back into my pyjama's.  We have bacon and eggs for dinner with a fresh fruit platter.  We put the kids to bed and I am still thinking about how I can get out of going tonight.  Luckily, I ran into another friend picking up the girls from daycare and I mentioned it to her.  Tara needed to go out as much as I did - I just didn't feel like it.  Well, Tara called, hubby was home and she'd be ready for 8pm.  It was 7:30pm,  I hopped into the shower, got dressed and left.  Once Lynda, Trisha, Tara and I met up, my mood started lifting.  I think I probably monopolized the conversation.  We just went to the local Keg - which seems to be our 'usual' spot, ordered some appetizers and caught up in each other's life.  I was home by 10pm, back in pj's and bed by 10:15pm. Thanks guys!

Sunday, January 17th, 2010 ~

     Today we initially had plans for Tori and Avery to have a play date with our friends little girls up the street; but when I called to confirm we were told that they had decided to go to the North Wentworth Arena for the public skate from 2-4pm.  We were invited to join them.  Fantastic!  Everyone was well, Dave was home, a beautiful idea (except that I haven't been on skates since university, oh oh).  Both Tori and Avery have lessons at that arena and it is literally less than 5 minutes from the house and although Tucker has been to a Toronto Maple Leaf Game, he has never been on the ice - what a wonderful family opportunity (and believe me, they don't come around all too often.)  Camera and camcorder batteries are charged.  Then something came over me, I thought I should call first to see if Tucker was able to go on the ice.  I logged onto the City of Hamilton website and located the arena phone number.  I spoke with an employee who advised that Tucker wouldn't be able to go on the ice.  I asked, "Why not?" Only to be told, "I don't know, it's just not done."  I asked if there was someone else I could speak with and he said that he would call the supervisor.  The phone rang moments later (no way he could've spoken to anyone), he told me that supervisor said it wasn't allowed, I asked the reason given and I was told some lame excuse about getting salt on the ice from the wheelchair tires?  I told him we'd clean them off, but it was futile.  I hung up so pissed off.  I had no sooner hung up when I immediately called back, spoke to the same employee and asked him for his supervisor's phone number.  He told me that he was about to flood the ice and could he call me back in a bit.  I said that would be fine.  While I waited, I started looking through the City of Hamilton's website for policies pertaining to wheelchairs on arena ice.  Then I came across the 2009 Annual Accessibility Plan - Ontarians with Disabilities Act Report.  On page 20/130, I located the following:

Needless to say, I was furious.  The employee was quick to return the call and provide me with the number of his supervisor.  I called and left a voicemail (I tried calling a number of times just in case the supervisor had stepped out).  I continued calling various City of Hamilton numbers in hopes of contacting someone so I wouldn't disappoint my children.  I then called another City of Hamilton Arena, and I honestly don't remember which one I called as I just looked down the list and dialed a number.  I spoke to the male employee who answered the phone and asked, "What is your policy about allowing a child in a wheelchair on the ice."   His immediate response was, "I don't know I haven't been asked that one before?"  Can you hang on a minute and I will ask.  He came back, "You just have to make sure the wheels are clean."  I continued, "Do all arenas have this same policy?"  He answered, "I don't know?  They should."  I explained what had happened with North Wentworth arena and he asked me to hang on for a minute.  After a brief moment, he returned and said that we could come down there and there would be no problems, but his supervisor couldn't call the supervisor at North Wentworth and tell him how to run his rink.  I thanked him but knowing that their public skate was over in 45 minutes, there was no way for us to pack up and get down there in time.  I then called a Burlington Arena.  I was immediately told that anyone in a wheelchair was welcome, but that they'd be required to wear a helmet.  I know Tucker can't wear a helmet, but I did get the impression had I told them the situation that Tucker was in a 5 point harness and can't hold his own head up and that I would be pushing the wheelchair, I don't think that there would have been an issue.  Well, my girls were yet again disappointed.  They'd lost out on a couple of fronts:  the ability to go out somewhere with the entire family, to get together with their friends and to actually see if I could skate?   At that moment, I was totally prepared to look into launching a civil lawsuit with whoever:  Ontario Disabilities Office?  Human Rights Commission?  Our MP, Mayor, etc?  I was furious.  Good thing it is Sunday and Dave is working 24 hours tomorrow.

 Tuesday, January 12th, 2010 ~  "HAPPY NEW YEAR!"

     Where does the time go?  Since it goes, why can we not stop it?  It seems so cliche to say, "I can't believe a whole year has passed by."  Yet, it has and I can't seem to account for much except that I have spent so much time with Tucker, Tori and (Dave too).  So, with that I will wish everyone a "Happy New Year!"

     Our New Year didn't quite start off as we had planned.  We had invited another family with kids the same ages as ours to stop by and visit for a couple of hours; however, their daughter (who by the way is in Avery's class at daycare) was sick.  So, we hung out with the kids, they went to bed by 8:30pm and I think Dave and I were in bed by 10pm.  We woke up New Year's Day with Avery vomiting and devastated that she couldn't sleep over at my cousins.  So, off Tori went to go skating and bake cookies.  Tori arrived home on Saturday, January 2nd and within a couple of hours she too was vomiting ;(  Thankfully, Avery had stopped vomiting and only had diarrhea.  Tori caught up to Avery quite quickly on Sunday.  Avery seemed to be better and returned to daycare on Monday the 4th - while Tori spent the week home avoiding Tucker with explosive diarrhea.  Okay, I know enough of the diarrhea and one day Tori will be mortified that I put all of this on the world wide web, but she is only 4 years old.  I couldn't have her going to school just in case she had an accident - that stigma of the 'girl who pooed her pants' would last throughout the better part of her school years. 

      Apparently our efforts to keep Tori and Avery away from Tucker were unsuccessful and Tucker began vomiting on Tuesday.  When Tucker gets like this, he dehydrates rapidly, so off his feeds he goes and quickly onto Pedialyte.  Which seemed to be working well for a while, but after being a day and a bit on his feeds, he is back to vomiting, and so the cycle repeats yet another two times, aghh!  My washing machine was doing triple time.  Then if that wasn't enough, Dave and I both got hit with this terrible bug.  Wednesday was Dave's first day working the new 24 hour shift, he was back home and in bed around 2pm, I hadn't gotten out of bed, with the exception to tend to Tori - who I brought to bed with me.  When the nurse left at 4pm, I had to get up.  Luckily for me, I was better by Thursday.  Dave wasn't so lucky and missed a second shift on Saturday.  I joked saying that he really didn't want to work a 24 hour shift, lol.

      Friday, I received a call from the daycare that Avery had diarrhea again - you've gotta be kidding me?  I went and picked her up.  I spent Friday and Saturday doing cleaning and disinfecting in hopes of killing the dreaded virus.  Sunday I took down all of the Christmas decorations and the tree ;(  It's amazing how big a room looks when the tree is gone.

     On Monday, I sent Tori to school and hoped things would settle down.  Guess what, it didn't happen.  The nurse called in sick and Tucker started vomiting again and is vomiting blood.  I really believe his reflux has gotten worse if that's even possible considering he has severe reflux.  I have been in contact with his pediatrician since last week and were watching him closely, but no other symptoms and of course he seems pretty happy.

      Today, we had a nurse and I thought I might be able to catch up on some sleep - yeah right.  Around 11:30am, the daycare called again.  I was bracing myself for vomiting and diarrhea - nope.  Tori was accidentally hit in the head with a shovel while outside playing and has a small cut just above her left eye.  Off to the daycare I go, with saline, polysporin and steri strips.  However, when I got there, I wasn't sure whether or not she needed stitches.  So, I take her to our clinic - they do sutures if need be.  She had already freaked herself out over the possibility of stitches, so when the doctor came in she was a mess.  We decided to try 3 steri strips in hopes they would do the trick.  Let's keep our fingers crossed.  We go back on Friday to make sure the cut is healing well - it's not deep and it's not long, so I am hopeful.

      That's been the beginning of our year.  I really do hope everyone else's year is off to a better start.

Tuesday, December 29th, 2009 ~

     Yesterday, we had the Patterson Potluck at our home, with family from my Mom's side - 16 in total.  It was very nice.  I did a completely non-traditional meal:  two pasta dishes (one in Alfredo Sauce, the other in a Red Meat Sauce).  I used plastic plates, cups, etc.  The food was in abundance and clean up was a breeze.  It was nice to see everyone.  I can't believe how fast this year has past by, and how terrible of a year it has been for so many people.  I pray that 2010 will be a much better year for everyone and I am so grateful for each day we get with Tucker - although it will never be enough!

Sunday, December 27th, 2009 ~

     Holy cow, it's really been a month since my last post?  I know it's the Christmas holidays and such, but I really have no idea where all of the time goes?  Dave is working his last 'night' shift of 2009, the girls are sleeping in their room and I am sitting in Tucker's room waiting for him to fall asleep.  So, I grabbed the laptop to do some updating.  I do remember that our power cord died (our battery only has 18 minutes on it fully charged) and it took me nearly two weeks to find one that was compatible with the laptop - thankfully someone informed me that there are 'universal adaptors', duh.

     For the most part, things are going smoothly (if you can say that).  I did get most of the gifts done before Christmas, Tori, Avery (and even Tucker) seemed to have a blast.  I swore I'd never spoil my children, but the girls got everything they asked for especially the drum for Avery and the baby doll for Tori as the Sunday before Christmas they were at a party with Santa and those were the two specific gift requests.  Do you know how difficult it was to find a 'pink' drum?  Not that the colour mattered as of December 22nd, Avery changed her mind and wanted a blue drum.  Then I went to Zellers for a baby doll for Tori.  The doll section had been completely picked over and how can I buy her a new doll like the other 5 that are sitting in the toy room?  Then I found the doll of all dolls.  It sits, it crawls, it walks and it has not 1 but 60 phrases and songs.  Apparently there are 6 sensors on her body that know when she gets touched, hurt, etc.  A very interactive doll - perfect except for the price.  I called Dave twice on this doll.  It was $100.00.  I couldn't get my head around spending that for a doll.  In the end, I decided to bring it home (as there was only one left), and I still had a couple of days to find an alternate, or firm my decision to keep or return.  Well, Zellers check outs were jam packed and when the cashier rang in the doll the cashier said, "No way, no matter how good my kid is I'd never spend that on a doll!".  So, of course, now people are looking at this 'doll' and how much it costs.  I retorted, "I bet you would."  The girl was adamant that there was no circumstance that would allow her to spend that on a doll.  All I said was, "My son is terminally ill and we know this will be his last Christmas.  His twin sister wants a pink drum, and his older sister wants a baby doll.  There is no way on this earth that those two items will not be under our tree for them on Christmas morning!"  The girl, with a tear in her eye said, "Ok, well yeah."  I looked up to see some shoppers staring at me with that sympathetic look and the woman behind me said, "I wish I could give you a hug."  I thanked her and told her I had a bad cold but appreciated the gesture.  I walked out to the van and cried.  There is no toy, or any amount of toys that will make everything okay for what Tori, Avery, Dave and I will lose - but right now, whatever it takes to make it easier for them I WILL do.

     With that said, it has been extremely difficult to find any gifts for Tucker and that is the worse possible feeling ever.  Tucker, an innocent child, has had a terrible hand dealt to him, and in addition to what's to come he is at a point where he doesn't have much sight, he doesn't have the strength to hold anything (only small items), can't eat or drink, can't even sit up.  What do you get him for Christmas?  No one, unless you have been in my shoes could understand the tremendous amount of guilt I have.  Tucker understands so much, I can only assume that he understands most of which is going on around him?  I know he sees, hears, and feels the joy around him, but does he understand that his sisters are opening all of these gifts while he sits in his wheelchair or with me?  I believe he must, yet he remains happy and is always such pleaser.  No matter how sick he is, he always tries to smile and doesn't often complain.

     That being said, Dave and I bought him a wheelchair accessible coat/blanket/bootie made by Kutaways, a couple of outfits that he has already been wearing as Christmas is everyday for Tucker, a new toothbrush, a voice recorder that I still need to record his favorite stories, songs, etc., this rubbery 'Wiggly Giggly' thing that vibrates and makes a lot of noise - he absolutely loves this!  Tori and Avery went out with Jamie (Tucker's support worker - who has become much more a part of our family than anything) to build-a-bear.  The girls made him a puppy (wearing a Toronto Maple Leaf Sweater) with a voice recording saying, "We love you Tucker" in unison.  Totally adorable - a real tear jerker.

     Since last Monday, Tucker just hasn't been himself.  Even his nurses noticed him to be quieter than usual.  Then, on Wednesday night, Tucker's breathing was quite laboured and irregular... doing some type of rippling up his stomach.  Dave recorded this and I called paging to speak to the on-call Pediatrician.  The Pediatrician didn't seem to be too receptive to my call, but I indicated we would be bringing him in.  Plus, he'd spiked a fever earlier that day.  We arrive at McMaster, thankfully not many people were there.  I told the triage nurse that Dave had heard audible wheezes and crackles in his lower quadrants.  The triage nurse indicated that she could also hear them.  We were brought into the ER, where the ER nurse also heard the wheezes/crackles.  Moments later, a new intern (I hadn't seen before) came in, and once again I retold "Tucker's story" from the beginning.  Not that I mind, but yet again my tears fell - and so did the interns (some of them do have feelings;)  Anyway, he listened and also heard the sounds in Tucker's chest, observed his flared nostrils and trach tugging - all which equal Tucker is working pretty hard to breath.  The intern even looked at the camcorder to see why we were even more concerned than usual.  Eventually, Tucker fell asleep and of course nearly an hour later the on-call Pediatrician came in.  I know people can have bad days, and that is why I put aside our earlier phone call.  McMaster is a great hospital, with wonderful staff (most of the time), but that night, this Pediatrician was literally pissing me off.  This Pediatrician wouldn't even look at the video we recorded of Tucker struggling to breath.  Since Tucker was sleeping, this Pediatrician said that he looked fine, but because I was concerned, Tucker would be admitted, they would do some blood work and a chest x-ray.  This Pediatrician did listen to his chest - then said it was clear.  They were in the room no more than 10 minutes and really didn't want to hear what I had to say.  This is one of the most frustrating things I find as a parent of a child who can not advocate for themselves.  I should really become a nurse so that I can better articulate the sounds and behaviours my son exhibits.  Needless to say, an hour later, Tucker's fever shot up to 39.9 degrees and the nurse took it twice to make sure there wasn't a malfunction with the thermometer - there wasn't.  Not that I want to say, "I told you so!"  But come on, I spend 24/7 with my son, I know him the best and the last place I want to be on December 23rd is admitted to the hospital with Tucker, when in less than 12 hours, I am expecting a house will 12 people for dinner.  With the potential of missing Christmas because Tucker's in the hospital.  Do you seriously believe this is were I want to spend the holidays, away from Tori, Avery and Dave???  Well, we were transferred upstairs to 3D (day surgery) while we awaited a bed on a ward.  I called Dave in the morning and asked if he had told the girls were Tucker and I were?  Nope.  So, I asked to speak to Tori.  I explained where we were and she became upset.  I tried to reassure her that Tucker was going to be okay, that he only had a high temperature and I wasn't sure when we would be home, but I would call her later.  Dave told his family that Tucker had been admitted and they decided to have dinner at Dave's Moms - which means I won't have a mess to come home to, yeah!  Apparently, when Dave packed up the girls to go to his Mom's, Tori and Avery wanted to come visit Tucker and I at the hospital - what cuties.  It was a wonderful surprise.  The best was when I spoke to Tori about maybe holding off on Christmas until Tucker could be at home?  She knows that I have Santa Claus on speed dial, and I could call him and tell him when Tucker would be getting discharged and that he would make a special trip for our family.  Tori agreed that it wouldn't be Christmas without Tucker and I there, so as long as Santa would make a special trip back, it would be okay.  What a darling.  I was so proud of her and Avery.  Tori handled it so well, with so much care and compassion - way too much for a little girl who is only 4 years old.

    Later that afternoon, we were transferred onto the ward in isolation - which we had been in since admission in the ER.  Well, we were with a nurse that is so by the book it was terrible.  I was afraid I may get kicked out.  She was trying to tell me it's policy to wear a gown and gloves in the room with Tucker and if I lay on the bed with him I would have to wear a mask.  I nearly lost it.  I also had a cold (all sinus), had been wearing the same clothes for the past two days, no shower - what possible point could there be to have me now wear a gown and gloves?  Especially since no one else had me wearing anything in the past 15 hours?  Not to mention Tucker's diagnosis is inevitable.  There is no way I am going to have barriers between me and my son.  I know that sounds selfish, but it's for him.  I can't imagine how he would feel if I wore a mask?  I could understand if I was terribly ill - in order to protect him, I would definitely do whatever it took but not for the reverse.  Well, as the day progressed, Tucker's fever was under control and the doctor/nurses were not doing anything for him that Dave and I couldn't do for him at home.  I asked the nurse if I could speak with the doctor.  Just after 5pm, another Pediatrician came in (thankfully), I pleaded my case to her and she agreed, without any other symptoms, there was nothing they could do for Tucker, so he would be discharged.  I gave Tucker a sponge bath and prepared him to go home while waiting for the paper work.  The nurse was useless.  Two plus hours later, I finally got the paper work, I bit my tongue and left.

     Home Sweet Home on Christmas Eve!  MERRY CHRISTMAS everyone!!

Friday, November 27th, 2009 ~

     To make a long story short...  Dave borrowed a neighbours 28' ladder and finally put up Christmas lights (for the first time in our 8 years together ;).  However, the first attempt he put them up backwards and wasn't able to connect power to them.  He was going to try and 'rig' something up, but I said no way.  I suggested that he call some of his local buddies to see if any of them had extension ladders.  I even called Rona, they have them for rentals, but Dave said it wouldn't fit on the van?  Anyways, Dave said that he and Doug had figured something out?  On Tuesday, after running a couple of errands, I came home to find L24 in my driveway, with Doug, Brent and Ted (Volunteers at Station 24), putting up the lights on the 2nd floor peak.

Thursday, November 26th, 2009 ~

     Today, I actually went on my very first 'field trip' with Tori & Avery with their day care.  We went to Spring Ridge Farm in Milton, ON.  Dave and I have taken the kids there before - generally each fall we go, it's so big and there is so much to do.  Two classes went to make Gingerbread cookies, yum, yum!  Not to mention it was loads of fun.  I didn't go on the bus ride - due to motion sickness, but it was a wonderful morning and I was able to see that my girls are really 'good' for everyone else.  Just kidding, they are good for us as well, most of the time ;)

     I can't believe Christmas is only29 days away!  I guess when it seems like there just isn't enough time - time just flies by.  I am thankful for each and every day we all get to spend with Tucker.  I am also thankful that despite everything he has faced, he is such a strong, brave and happy little boy.  Each day I hope that he will defy the odds.

Tuesday, November 24th, 2009 ~

     Back to the hospital we go!  Tucker's tube is again 'blocked'?  Prior to leaving the house, I call the on call Pediatrician at McMaster to let them know that we are coming in yet again and relay the events that have transpired over the past week; only to be met with, "Well, you are going to have to think of another way to give Tucker his meds."   I am furious.  We've been given Tucker the same meds for the past 15 months, through a tube that is the same size as the one he currently has in, it's not rocket science?  I call Dave to meet me at the hospital as I am afraid that I will lose it on the doctor.  We arrive, get processed through triage, register, etc.  Now we wait for the doctor.  Which seems to take forever - not helping the frustration that is building inside of me.  Once we get in to see the surgeon, I have to admit, I was pleasantly surprised.  He was much better in person than on the phone.  In fact, he was better than the other two surgeons I had dealt with in the past four days.  He explained some options to me and took the time to show me how to insert another tube into Tucker's stomach should this one block, balloon break, etc.  Not as hard as I had thought it to be nor was I freaked out about doing it.  It doesn't seem to hurt Tucker either, which is the most important factor.  Dave refuses to do it.  Go figure, Daddy who has all of this training, qualifications, etc???  Oh well, I will be the one at home when things go wrong with the tube anyway.  We return home in much better moods than we had arrived, that says a lot.  Let's hope we aren't back again any time soon.

Monday, November 23rd, 2009 ~

     I totally forgot about Tucker's appointment at Chedoke today, to get him re-fitted with new foot orthotics and a follow-up for his wheelchair modifications.  The appointment was for 8:30am; somewhere around 8:40am I remembered and spent the next ten minutes making numerous phone calls only to get a voicemail each and every time (while feverishly running around the house trying to get Tucker and I both ready to leave the house).  Once in the van, I used the hands free, and finally about 9am, I got to speak to a person who advised us to still make our way there, whew - all the rushing around didn't go to waste.  While enroute, I also called the Pediatric surgeon as advised to do so on Friday. 

     At 1140am, Tucker an I were on our way home when Dave called to let us know we had an appointment with the surgeon at 3:15pm (cancellation, or we wouldn't have gotten in until mid-December).  We continued home, I really needed some sleep - which of course didn't happen.

     We went for our 3:15pm appointment, only to finally be seen at 4:30pm.  It was a total waste of time and the doctor spoke like I had wasted his time as well.  I apologized to let him know 'how sorry I was to had wasted his time, had I not been instructed to make the appointment in the first place, I wouldn't have.'  He tried to smooth it over by saying, "I hope I didn't make you feel like you wasted my time, that is what I'm here for."  DUH!  Bottom line, when this tube gets blocked or the balloon breaks, we will have to decide what option we want to go with for a more 'permanent solution' - which isn't really permanent at all.  The new tube will still have to be changed every 1-3 months depending on how long the balloon in it works.

Saturday, November 21st, 2009 ~

     Tucker and I got home from McMaster at 3:30am - I am way beyond exhausted.  I put him in his bed and tell him that I'll be right back (one of the few times I lied), I go and lay down on our bed and pass out.  About an hour later, Tucker is crying and Dave goes into put him back to sleep.  Dave mentioned that he ended up sitting with him for quite sometime.  Of course Tucker and the girls wake up before 8am, no sleep for me.

     Tonight one of the Mito Moms had arranged a fundraiser at Club 54 in Burlington, that Dave and I were looking forward to going to see, followed by a dance.  Proceeds were going to the Neuromuscular Clinic at McMaster.  Tori and Avery were going to have their first 'sleep over' with my cousins, and we had booked a nurse from 6pm until midnight.  We were hoping to go out for dinner first.  This night has been planned for weeks.

     My cousin picks up the girls and after he leaves Dave notices that the powder room toilet is leaking?  Yep, Dave is not a plumber.  Although our brother-in-law is, he is not available.  Dave can't get the water to shut off (main valve leak?), resulting in him tearing down drywall in the partially finished bathroom in the finished basement.  So much for getting out.  Even if we got out in time, Dave isn't the happiest camper right now.  I consider phoning a friend, but figured that would only make matters worse.  Our nurse arrives just in time to witness Dave in a 'crazed & panicked state'.  As I search through our address book, to see if I've overlooked someone that could potentially help Dave, Nurse Lindsay advised that her Dad works for Water Treatment and that she could give him a call.  I jumped all over that.  Lindsay's dad arrived, he and Dave determined what they needed and then left for Rona.  While they were fixing the toilet, I secretly called for Chinese take-out.  About 15 minutes later, the problem was solved and Lindsay's Dad left.  Thanks so much, Lindsay's DAD, yippee - our toilet works better than before!

     Dave came into the t.v. room to apologize, but he had a headache and was frustrated.  He was going to have a shower and was starving.  I told him dinner would be delivered at 8pm, leaving him ten minutes to clean up.  We ate our dinner while watching a t.v. show we had recorded.  It felt silly having the girls gone and a nurse with Tucker?  We were both exhausted, but knew that Lindsay was only here until midnight.  I suggested the hot tub (since neither of us would have to get out to go and tend to Tucker).  After a relaxing soak, I was in bed by 10pm and Dave said he came to bed around 11:30pm.  So much for our 'date night'.  ;(

Friday, November 20th, 2009 ~

     Around 3:30pm, Dave left for work.  It was just Tucker, Tori, Avery and I.  We were going to have dinner, popcorn and a movie - a.k.a "Family Night".  Well, I went to change Tucker's diaper and get him into his P.J's around 5pm, and I thought his tube connection had separated.  As I looked closer, it looked like the end attached to the wheelchair had a mushroom on the end of it?  As I looked at Tucker, I realized he had a 'hole' in his stomach.  All I could remember after his G-tube was surgically implanted was that if it fell out, we needed to get to the hospital quickly so that the 'hole' did close up.  I asked Tori to get me the phone, while I grabbed gauze and tape, to prevent infection and soak up any leakage.  Tori and Avery were playing and she wasn't in any hurry to get me the phone.  I then told her it was an emergency and I needed the phone.  That seem to get her going in the right direction, but not at great speed.  She was walking and talking to me asking what was wrong.  Suddenly, she saw the hole in Tucker's stomach.  Her tears started to fall, she repeatedly asked me if Tucker was going to be okay?  I told her that he was fine, but yes his tube had fallen out and we needed to bring him to the hospital.  She started to sob uncontrollably?  I tried calming her down, while I made phone calls in attempts to find someone to stay with the girls, or so I could drop them off.  NO such luck.  I asked the girls to get their coats and shoes on.  I continued talking to Tori, telling her that Tucker was fine (he hadn't cried, or anything), that we needed to take him to the hospital to get another tube so he could eat and get his medication.  Nothing I said seemed to help.  Finally, I took cupped my hands gently around her face, looked directly into her eyes and told her, "Tucker isn't going to die tonight, he is okay".  It worked, she was able to compose herself and help me get everyone out the door.  On our way to the hospital, Tori still had many questions, which I wished I could have stopped driving to speak with her, but I had no idea how long it takes for the hole to close.  I answered all of her questions as usual - as honest as possible.

     Dave was able to get someone to cover him and was on his way to meet us at McMaster - not that this an emergency, but with all the viruses going around:  H1N1, the Flu, RSV, etc., I didn't need the girls being subjected to that, or have them watching while a doctor re-inserted his tube.  I even brought a Halloween bag of Cheeses for them so that one had would hold the bag, the other was to feed them so they couldn't touch anything.

     Thankfully, Jamie - Tucker's Support Facilitator called back and came to take the girls home.  It only took us 2.5 hours at the hospital before we returned to the house, we thanked Jamie and went to get Tucker's meds so he could get to bed.  Guess what?  The tube was blocked.  I called the hospital and of course we had to return.  We arrived around 8:30pm, was seen by Pediatric Surgeon, sent for x-rays to make sure all was well and after the third G-tube was inserted, we were satisfied that Tucker would be able to get his food and meds through the tube.  We arrived home around 3:30am - ughh, what a very long and exhausting day.

Thursday, November 12th, 2009 ~

     "Happy Birthday, to me!"  I do not plan on telling anyone my age.  I am just so grateful that Tucker, Tori, Avery, Dave and I were together for it.  No big party, just us.  I know you're not supposed to share your birthday wishes, but I bet if you think hard enough, you'll all be able to guess my wish.  Thanks for all of the birthday wish emails and phone calls!

Friday, November 6th, 2009 ~

     The girls were dropped off at school, the nurse was at the house, and I had plans to try to tackle the computer/mail room.  I was then summoned to the kitchen by the nurse.  Tucker's G-tube was blocked.  She had tried to clear it, then I tried everything I knew to clear it, nothing worked.  I tried to call the on call Pediatrician, only to be kept on hold the entire drive to McMaster.

      We get in to see the Pediatrician resident and an intern.  They are not able to clear the blockage.  The Pediatric Surgeon was paged.  After nearly 1.5 hours and three doctors, the tube is clear and it is suggested we should make an appointment to get the tube changed.  From my understanding, I don't want another tube, I want to keep this one for as long as I possible can.  It was suggested to flush the tube with Cranberry Juice so that the natural fruit acids would break down any potential breakages before they have a chance to build up.

      Hi ho, hi ho, it's off to home we go.  Just in time for the nurse to go home.  So much for tackling the computer room - not sure if I'm happy or sad about that :>

Monday, November 2nd, 2009 ~

     I booked Christmas Photos to be taken today and tomorrow because Tucker is not able to sit for any length of time.  Well, everyone seemed to be in a good mood this morning, so I decided to get the girls dressed up as well and hoped that things would run smoothly.  The stars must have been aligned.  This was the first time I had ever put Tucker in a dress shirt and pants with a tie and vest.  My eyes began to tear - he was so handsome.  I think he felt it as well.  You know when you get dressed up and you feel great - you have this air of confidence?  Well, Tucker had this attitude about him, one I had not experienced before - if he could walk, he'd be strutting.  The girls looked stunning as well.  We arrived to take photos at the Sears Portrait Studio in Limeridge Mall (where we usually go).  The girls were ready and waiting and with each flash of the camera a moment in time was captured.  A beautiful moment.  There were so many photos to choose from, how lucky could I be to have great photo's taken of the kids individually and then together.  Once we finished the photo shoot, we walked to the Disney Store as Tori wanted to show me something.  So many people looked at us with big smiles on their faces and some even gave me compliments about how lovely the children were dressed - I was a proud momma!

Saturday, October 31st, 2009 ~

   "HAPPY HALLOWEEN"

    Who says that a three and four year old can't fake 'being well'?  The girls knew it was Halloween and throughout the day had seemed to be back on the track to getting better after having what the nurses suspect (based on their symptoms and how high/long their fever was) H1N1.  Yep, I was paranoid.  We kept the girls away from Tucker as much as possible.  The girls seem to be getting the sniffles, but are acting like they do normally, or so I thought.  I got the kids and myself all dressed up in our costumes:  Tucker and Avery were Pirates and Tori was Sleeping Beauty, I was a 'good witch' and Dave was the Grim Reaper.  The house was well decorated thanks to Dave.  Dave's Mom came over to hand out our candy while we were going to go Trick or Treating.  Tucker lasted all of two houses and Dave and I decided it wasn't worth it for him to be out if it wasn't going to be a 'happy' time for him.  So, Dave took Tucker home and he stayed there to scare the kids while his Mom gave out candy and watched Tucker.  The girls and I just went on our street (which is a Crescent), we weren't even 3/4 of the way done and the girls told me they wanted to go home?  They barely had any candy???  Something was wrong, I felt Tori's head and she was burning up, her and Avery both were complaining of tummy troubles.

     We arrived home, got them into their pyjama's, gave them some Motrin and snuggled up to a movie, "The Wizard of Oz"  Their new favorite movie.  I was surprised that there wasn't many children out, and not many came to the house.  Apparently either a lot of children are sick, or people are being careful with the H1N1 scare.  Either way it was still a good night for the most part.

You can click the following to see photos of the family all 'dressed' up:  Tucker, Tori-Tucker-Avery, The Whole Gang

Wednesday, October 28th, 2009 ~

     Well, today was no different from the last two days, except Tori's fever is getting higher and both her and Avery have 'cold symptoms' with some complaints of tummy troubles?  I called the doctor's office, and it took forever for a nurse to call us back - she wasn't able to answer my question either.  But they don't want the girls coming into the clinic to try to avoid spreading whatever they may have.  I was directed to call the local H1N1 line, where I was re-directed to call 'TeleHealth'.  Which I did.  After waiting on the line for nearly 40 minutes, a TeleHealth receptionist identified herself and asked if I wanted to wait to speak to a nurse, or she could take my number and have a nurse call me back.  I asked how long the wait was and nearly had a heart attack when she told me that they waiting time is currently approximately 7 hours.  As you can guess, I left my information for the nurse to contact me.  I'm assuming I'll get a call sometime in the middle of the night.  At least I'll be awake :)

Tuesday, October 27th, 2009 ~

     The girls woke up again with high fevers, lethargic and loss of appetite.  They spent the morning in their room watching movies, and dozing.  Picked at their lunch and then took a nap.  They somehow found a burst of energy for about 1-2 hours, then took (naps).  Tori hasn't had naps in a couple of years and Avery only has them at daycare because it's mandatory for her age.  When they wake up, their temperatures have spiked again.  Thankfully, they don't have any other symptoms.  However, for a 3 & 4 year old who have only ever been sick once in their lives, how do you get them to tell you exactly how they feel?  I called Tori's school to see if anything is 'going around' her school, only to be asked, "Didn't you get the pink sheet that was sent home yesterday?"  I said, "No", as Tori was absent yesterday as well.  It turns out that the little pink sheet sent home told parents that the school had been declared a Outbreak Site, due to the number of absences along with the symptoms provided by parents as reasons for the absences.  I then told the school that Tori wouldn't be returning for the remainder of the week, even if she was feeling better.  I then called the daycare and relayed the same message that Tori and Avery wouldn't be attending for the remainder of the week.  I'm trying to be positive and hope that whatever is going around will have come and gone in its 'waves', then I'll consider allowing them to return.  It's hard having them home with Tucker while their sick, but basically we're keeping them upstairs and I'm spraying Lysol everywhere:  beds, bedrooms, light switches, doorknobs, toilet seats, etc.  Thankfully, the girls, Dave and I have already established good hand washing techniques.  So, at 12:30pm, Tucker's new nurse, Lindsay, and I packed up Tucker and off to the H1N1 clinic we went.  I couldn't believe the line up.  It was out the building, down the driveway and up the street.  Luckily, we have a permit for wheelchair parking and were able to park in the parking lot.  I left Tucker and Lindsay in the van and I went to track down the nurse 'in charge".  After a few minutes of starting to explain Tucker's medical condition, she interrupted me and Tucker, Lindsay and I were able to come in and get our shots immediately.  I'm so glad he didn't have to wait, it would've been hours.  I'm not looking forward to taking the girls.  Hopefully, more clinics will open up - soon!  Now we just have to wait for another 21 days, for Tucker to get his second half of the shot and pray he doesn't contract anything in the meantime.

Monday, October 26th, 2009 ~

     Oops!  I didn't realize so much time had lapsed since my last post.  To say the least, things are busy around here.  Both girls woke up with high fevers today - but no other symptoms.  I'm praying it's not the H1N1.  Other than this fever 'popping' up, the girls have been pretty good.  Tori continues to love being at school and amazes me daily with things she has learned.  Avery loves going to daycare and being with her 'friends'. Both girls are loving gymnastics.  Unfortunately, Tucker doesn't participate in any community events now and I don't take him to the Early Years Centre due to the 'Flu' season being upon us.  It's going to be a long winter.  Today Tucker had an appointment with Dr. MacNay.  Tucker isn't sick (knock on wood), but his arms and legs are posturing a lot.  Basically his arms and legs look like scissors and cross over each other - which isn't a good sign, and makes diapering and bathing very difficult.  He is even more demanding, always wanting to be moving in his wheelchair.  He is either in his wheelchair or in his bed, which is his choice, and he seems to be more comfortable.  I'm surprised that we haven't worn wheelchair tracks in the hardwood up and down the hallway.  His arms, elbows and jaw sublux (dislocate) many times throughout the day.  He still doesn't sleep??  I discussed everything with Dr. MacNay and he made a call to get Tucker in to see Dr. T today, so off to McMaster we went.  We had Tucker's hips x-rayed, to make sure that they weren't subluxing.  Tucker does seem to be in pain at times, but it is so hard to be certain with his inability to communicate with us.  Well, Dr. T made some adjustments in his medications and we are keeping our fingers crossed that Tucker will be able to get some much needed sleep (us too)!  Dr. T said we should know within 3 days?  I'm keeping my fingers crossed - I'm exhausted and even if I get some sleep, it just seems it's never enough and the bags under my eyes continue to get bigger and more noticeable.  Dr. T also mentioned that now more than ever it's time to keep Tucker 'comfortable' because of the posturing.  So, with the adjustments in his medications, Tucker may seem 'groggy' throughout the day, but better groggy than in pain.  I hope he maintains his happy disposition, but I definitely can't fault him if he isn't.  He and his little body have been through so much in such a short time - I'm so proud that he has always remained happy and always trying to please us.  His smile continues to light up the room and infect anyone in it.

Sunday, October 18th, 2009 ~

     What a beautiful weekend!  Unfortunately, Dave was helping our brother-in-law for most of Saturday, so that was a wash.  But today, we went to Spring Ridge Farm in Milton for some family fun.  The girls climbed bails of hay and ran around completely content.  Tucker, Tori and Avery got their faces painted and went through the corn maze.  And I took photos.  It was a beautiful day, but it is heartbreaking to watch the girls and share their joy, while Tucker sits quietly in his wheelchair.  Yes, he is content going for a 'van' ride, being outside with Mom & Dad - but I had so many dreams for him.  Once we packed everyone up, we headed home and stopped at a local farm (where we go annually), and picked up the pumpkins.  Of course - more pictures taken.  Then "home sweet home."  We feed the kids and got them into bed.  Then for whatever reason, I wanted to watch a clip of CHCH News from May 28th, 2009 that was recorded for the McMaster's Children's Telethon.  It really hit home just how much Tucker has deteriorated in less than 5 months.  His eyes still sparkle and his smile is still infectious, but his movements, his ability to hold himself up - his body is failing him and it was so obvious after watching this clip.  The tears flowed and it was so upsetting to realize these changes in Tucker.  Again, I ask, "Why?"  Why does this happen to the innocent children?  Why is this happening to Tucker and our family?  Lately, after reading up on some of our friends sites, we have learned that two other children have 'earned' their wings.  I'm so sorry for their parents and their families.  Please take a minute to pray for those who have 'earned' their wings way before their time and then tell your children/family members just how much you love them.

Here are some photos from today:  Me and the kids,  Dave and the kids, My Little Man, My Two Little Kittens,

Wednesday, October 15th, 2009 ~

     I realize I haven't made an entry in quite sometime.  So much has gone on over the past few days; unfortunately, I will not be able to share it with you guys at this time.  I just wanted you to know how sick and appalled I am at what has taken place, and when I finally am able to share events that have been transpiring since the summer - you will be shocked.

     I can't emphasize how important it is to protect your children, even from those you trust - those who you would never expect to do harm to your child(ren).  There are always signs, just keep your eyes open and never doubt your maternal or 'parental' intuition.

     Give your family hugs & kisses.  Be sure to tell them just how much you love them and that they can tell you anything!

Monday, September 21st, 2009 ~

"Happy Mitochondrial Disease Awareness Week!!"

     After getting some sleep and a bit more organized, I finally put all of the numbers together for the results of the Tucker's Time Charity Golf Tournament.  I am so pleased to share that as a result of sponsors, donors and participants, we were able to raise $7625.49 for the Neuromuscular Clinic for Mitochondrial Disease Research at McMaster Children's Hospital - way to go, everyone!  Dave was off this past weekend and it was wonderful.  Tucker, Tori, Avery and I enjoyed having "Daddy" home and relaxing in the hot tub and just spending time together.  We even went to church yesterday.  I know I've been boycotting for quite some time and I still don't understand why this happens to innocent children and their families, but I am grateful that since his diagnosis we have had another year and then some.  We have had a couple of pretty 'difficult' times to say the least, not knowing what could happen and Tucker surprises - he is such a brave little trooper!  I pray he continues this fight and wins each battle.  I'm not looking forward to this winter / Flu season, but I'm learning to take each day at a time.  About a month ago, Tucker's medical history was sent away to the Ministry for approval for him to receive the RSV shot.  We just found out that he was approved and will receive monthly shots between November and April.  Hopefully they will help keep his immune system strong.  He has been starting to reflux more and it so upsetting to watch him and not be able to comfort him.  He had an appointment with Dr. T today and we are going to split the drugs again, and try to give them more evenly around the clock in efforts to help with the reflux.  Other than that, his moods fluctuate throughout the day and it's difficult to know what is bothering him?  That's probably one of the most frustrating things with this disease... Tucker not being able to communicate what's wrong.  As a parent, it's hard enough to have a sick child and you often can't wait until they can 'talk' and tell you what's wrong.  We have a 3 year old, that by age alone should be able to 'tell' us, but the disease has taken that away too.  This disease has taken so much from Tucker and my family and so many other families - it is not fair!  I pray that all of our efforts won't be in vain, and I hope that I am alive when the doctors / researchers find a treatment or better yet a cure!!

Friday, September 18th, 2009 ~

     Last night was the first night that we had a 'night shift' nurse.  It was great.  I'm actually starting to show obvious signs of burnout.  Yesterday afternoon, I actually fell asleep for about 3 hours - I only got up because I knew Dave had to go pick up the girls and dinner needed to be prepared.  I then returned to bed just after 9pm, as there is no way I could wait the nearly 2 hours for the nurse to arrive.  Dave woke me up when "Lindsay" arrived, we had a brief conversation of which side Tucker prefers to lay on and some of the noises he may make that either indicate likes or dislikes and things that may help her settle him during the night.  We also told her to wake us for anything if she was unable to get him settled at any point.  I then crashed until 5am, when Lindsay required or help.  I woke up again at 7am - end of Lindsay's shift.  I feel good - but could easily return to bed for more sleep ;)  I thought I might feel weird with someone in the house.  Nope, must have been a fleeting thought because with Tucker's monitor off, I didn't even hear him until 5am.  Dave had a great sleep as well and jokingly said, "Can she come 7 nights a week?"  Unfortunately, that isn't possible, but we hope to get at least two nights a week with her.  Thanks, Lindsay!

Thursday, September 17th, 2009 ~

     Since our journey with Tucker we have had a tremendous support system.  Some of the support comes from family, friends, co-workers, complete strangers, the children's daycare, etc.  It's so amazing and I don't often get to thank everyone.  So this entry is simply to everyone that supports Tucker and our family.  I'm not talking about any of the fundraising events; although those supporters are just important.  I am speaking directly to the friends who have graciously made and dropped off meals that stock our freezer - they are so yummy and take so much pressure off of the preparation while I have the three kids.  People have asked what we need, etc... and it's hard to except help in this situation.  Even though we need it, we've received so much already - we don't want to take advantage, and we definitely don't expect it.

     Then Dave and I ran out to get some necessities at Zellers, to come home and find a package in our mailbox?  It was addressed to the Patterson Family from Our Friends that are Thinking of Us!  Dave gave me the envelopes to open.  It was a beautiful card signed by the mom's in the "Parent Link" group from 2005.  We all used to get together the first Wednesday of the Month, and I think most of them still get together - but I haven't in such a long time.  I've felt guilty, but I am just not in the 'get together' mood.  I hope no one is offended and I often see them now that some of their children are starting at the same school as Tori.  Or at the YMCA when the girls are swimming, etc.  Then I opened the second envelope.  It was a gift certificate for house cleaning.  Simply amazing and much needed.  The tears came streaming down my face.  Dave thought I was crazy.  But it's just so nice to know that even though I've lost touch with these "Mom's" they obviously still think about us - that is very touching.  Thank you so much:  Lynda, Miriam, Tara, Kate, Kelly, Ileana, Lee and Ali.  Words can't express how grateful I feel to have such good friends during this very difficult time.  Thanks for understanding.

Tuesday, September 15th, 2009 ~

    Well, after 7 months of waiting, Tucker finally had an appointment with Dr. Feigenbaum at Sick Kids in Toronto today.  It was not a 'second opinion'.  Unfortunately, we have Tucker's 100% diagnosis - it's the prognosis that is undetermined due to the complexity of the disease.  It was an appointment to reassure me, as a Mom, that I have done all that I could possibly due to help Tucker.  I also wanted to make certain that Sick Kids didn't have any 'drug studies' or similar taking place at their hospital that may/may not help Tucker?  Sadly, there was no 'miracle' cure or treatment at Sick Kids.  I was reassured that she wouldn't change any of Tucker's plan of action.  Dave and I however are going to hopefully be tested and see if we do both carry the gene mutation that the doctors believe we do.  Tucker's genetic mutation is considered a 'fluke' and I want to make sure we aren't overlooking the most minimal possibility that our girls may have or be carriers of this mutation.  It is a simple blood test that will provide us with info that either our children should be tested prior to starting their own families or let us know, we don't have to worry for the next two decades.  This decision is also something that our sisters and brothers will need to consider (although the odds are not high - it's something they need to be aware of, since we have no idea where this came from?).  Either they can do the test themselves, or decide not to and just give their own children the information before our nieces/nephews decide to start families.

    Today was a day filled with appointments.  This afternoon we met with another supervisor and nurse contracted out by the C.C.A.C. specifically for Tucker and another child because there is such a shortage of nurses.  So, we may have a nurse for two night shifts a week - an effort to allow Dave and us to get some sleep?  Sleep, what's that? 

    Finally, the last appointment was scheduled at 5pm with Dr. MacNay (Pediatrician).  As with all doctors, ran a bit late... but the girls were having fun with Jamie and Dave was working - so it was just Tucker and me.  Tucker had the worse deterioration we've ever seen over the past two months.  It now seems to have reached a plateau and we've even seen a gain or two - which is encouraging.  However, we also learned that there may be more of these declines over Tucker's lifetime and it's so uncertain during the declines whether or not this is the time to 'prepare' ourselves and our families.  It is just so difficult to see your own child going through this, and there is absolutely nothing you can do except hold him while he screams and cries out in pain - hoping that you are providing some type of comfort?  These 'episodes' of being inconsolable increase in frequency and duration.  It breaks my heart.  The worse part is that we (doctors included) know that Tucker understands so much... it's always been his expressive language that has lacked.  I constantly wonder what thoughts go through his head when he sees his sisters or other children, he must know that he is different?  Does he wonder why this happened to him?  Does he look to me for treatment/cures, and wonder why I can't help him?

Saturday, September 12th, 2009 ~

     I didn't realize nearly two weeks has elapsed since my last post?  As usual, it's been a busy two weeks.  Tori started Junior Kindergarten, sniff, sniff ;)  She's doing fabulous - so far and seems to really love it.  Avery isn't doing so well not being with Tori for half the day; hopefully, this will result in a closer bond due to absence and more getting along when they are together!  Tucker has been fighting a low-grade fever for the past three weeks, on and off?  But he has no signs/symptoms of infection, which the doctors feel is just part of the deterioration of his brain to regulate his body temp?  He did however have an appointment with the Pediatric Pulmonary doctor on the 8th.  Just when Dave and I had thought we had made decisions on everything that we may have to deal with, we were thrown a real monkey wrench.  I don't want to go into detail as most parents don't want to even think about some of the decisions we've had to make.  Which luckily so far we've agreed on.  While at the doctor's on Tuesday, we were presented with another scenario for consideration.  We have been presented with numerous scenario's as doctor's don't know enough about this disease and each child they've seen in the past presents differently.  It was one that Dave and I hadn't considered and didn't think it would be possible... but apparently it is.  It has brought Dave and I to our first 'impasse'.  Dave and I are not fighting about this, we are just praying that we will not experience this with Tucker for two reasons:  for Tucker's sake and for our marriage.  I can't predict the future, nor do I think I want to know - but I can just hope!

     On a totally different note... way back in March, I had the opportunity to meet other mom's with children diagnosed with Mitochondrial Diseases (we call ourselves the "Mito Moms").  One of the moms - Suzanne Gowland, advocated to the Mayor of the City of Burlington that Mitochondrial Disease Awareness is lacking in Canada and was hoping to initiate annual recognition of Mitochondrial Disease Awareness Week during the third week of September, like our U.S.A families have done for years.  Well, she succeeded!  Three cheers for Suzanne, Hip hip hooray!  Hip hip hooray!  Hip hip hooray!  As a result, several Mito families and friends gathered in Central Park in Burlington, Ontario this morning for a Tree Planting Ceremony.  It was a spectacular day and Mayor Cam Jackson was on hand with a couple of members from Dr. Tarnopolsky's staff (Erin Pearce, and I am so sorry I forgot the other researcher's name?)  The weather was perfect, the kids were doing well and we all had a great time.

     I thought it best if I upload some of the photos now, before I forget:  Mayor Cam Jackson proclaiming Mitochondrial Disease Awareness week, The Patterson Family, "Tucker's Troops" Family & Friend Supporters in attendance.

     Which also reminds that I haven't posted any of Tucker in the "Hot Tub".  Again, many thanks go to the "Children's Wish Foundation" - not to be confused with "Make-A-Wish"  A day doesn't go by that Tucker doesn't fill with excitement when you mention the hot tub to him!

Tucker's 1st day in 'his' hot tub!          Tucker's Wish 2009 dedication       Tucker's Wish 2009 with Hand/Footprint          Patterson family enjoying the hot tub

Monday, August 31st, 2009 ~

     Where has the month of August gone?  I know that we haven't had a summer, but August has completely whizzed by!  We've been very busy with deck demolition and completion, and although it is not yet finished, we've been able to get into the hot tub for the past two days.  It is amazing.  Had we known what an impact the hot tub would make on Tucker (emotionally and therapeutically) and the fact it is something we can enjoy as a family - we probably would have went further into debt months ago.  Tucker hasn't been able to move so much in nearly a year.  It's helped with his exercises and his overall well-being.  He seems happier and the girls love the hot tub, too.  Avery can't stop kissing Tucker and telling anyone who will listen about "Tucker's Hot Tub".  We told the girls that this was Tucker's wish for him and our family, Avery still thinks it's "Tucker's Tub"?  Oh well, the main thing is that we all love it, being together, seeing the joy on all of their adorable little faces and being able to to remain in the tub for quite some time as it keeps Tucker warm, and he loves the bubbles from the air jets - not the whirlpool, just as I expected the whirlpool jets are a little too forceful.  So it was a good idea to purchase last years model.  Thanks so much to the Children's Wish Foundation for coming through so quickly.  It was the perfect wish for Tucker.  For any parents with children similar to Tucker, you may want to consider getting one, or finding friends who have one and asking to use theirs - it has made a noticeable improvement in Tucker's range of motion (even the nurse noticed) - it would have been nice to see if that would have made any difference with Tucker over the long term, but now we'll never know - so if this info can help another family, that would be great!  Unfortunately, Tucker has recently caught a cold - so I think we will be holding off going in the hot tub for a day or two... we'll see as Tucker may protest especially knowing how much he 'loves' going in.  As I've been telling everyone, Tucker hasn't been making any gains in the past month and a half and was actually deteriorating quite rapidly.  I don't know what's going on and I know this disease baffles the specialists, but over the past 4 days or so, Tucker seems to have reached a plateau?  I can't explain it, but he seems a little happier and has been able to say:  "Mom", "no" and "more" again.  He hasn't had any words in months and I'm so grateful to hear him say, "Mom".  I don't think any parent could understand how it felt when Tucker lost his ability to speak.  But I am thankful to hear him say, "Mom" again.  I feel terrible for Dave, as Tucker hasn't been able to say, 'Dad' or 'Daddy'.  Although Dave doesn't seem to be upset (and maybe men are really from Venus) but I know how upsetting it was for me - I can only imagine.  The girls have been going through 'something'.  Tori seems sad and distant but seems to 'perk up' when we get some one on one time.  I can't believe that she'll be starting school in a couple of weeks.  Avery on the other hand has been exhibiting some negative behaviours?  Throwing tantrums and having accidents (which surprises us as she has been potty trained for quite some time).   Then two minutes later she's full of love and affection and it seems like she doesn't even remember the previous outburst?  Dave and I are running out of ideas to handle these outbursts, but we continue to 'lose'.  So, we've decided to try to do something with the girls alone.  Tori has been to a couple of movies, Avery has not had the 'theatre experience' as yet.  So, we're planning a night out with the girls; which will be dual purpose with Tori starting school.  Oh, Tucker had an appointment with his pediatrician on the 21st, when he wasn't doing so well - thankfully a doctor got to witness first hand.  As a result, the doctor offered to write a letter to whoever to increase our nursing  hours.  Yippee.  It came into affect last Monday.  We now have a nurse 4 days a week for 5 hours a day.  It actually gives me some time to get things done while Tucker is in qualified hands and I don't need to worry so much - doesn't mean I don't though.  Our case manager is still trying to find shift nursing for us and other families a couple nights a week so we can get some sleep... not having much luck in that department.  I guess like everything we have endured over the past year - baby steps define it best!

Monday, August 17th, 2009 ~

     I finally fell asleep so where around 4:30am, only to be woken up by a ringing phone at 6:30am - AGHH!  Our nurse was ill and wouldn't be coming.  I can't believe the in-home nursing system.  There are way too few nurses for the number of patients/clients, and it's the families that suffer.  Because of Tucker's recent deterioration, we've been approved for more nursing hours and we've agreed to two shift nursing shifts per week, which I can't believe will come to fruition as we have a hard enough time getting a nurse for two 8 hour shifts during the week.  Don't misunderstand, Tucker's nurse is great, it's the system and the nursing companies that suck.  I haven't really let on just how bad they are as I am happy to be with home to take care of Tucker, but with increasing lack of sleep there comes a domino affect.  Unfortunately my patience, are wearing thin.  I'm still learning about different options that may be available to us, but there is no guide to help families in similar situations, I learn by talking to other families who have been in here longer - thankfully, we all tend to be very supportive of each other as there isn't anyone who can understand our thoughts, actions and emotions other than another parent facing what we are all dreading.  For everyone else fortunate enough to not be in a similar situation, be thankful and never take your families for granted.

Sunday, August 16th,  2009 ~

     We've finally decided on a deck and builder to complete the deck surrounding the hot tub; now we just have to find a company to do the stamped concrete and then co-ordinate the jobs to git'r done!  I'm hoping that it will be completed by August 29th.  (That's the date in my brain, lets see how realistic that is).  Tomorrow is Tori's last day of her first year of soccer - where did the summer go?  We know the weather has finally arrived.  It's going to be another busy week of appointments and soon, our darling Tori will be starting school, boy they grow up so fast.

Thursday, August 13th, 2009 ~

     Well,  the demo of the 'old' deck is complete and the concrete pad has been poured.  I want to say a special, "Thank You" to Dave Poirier of Dave Poirier Concrete and his employee - Ryan.  They took the job and worked feverishly in the heat for two days to get the job done so that we could get Tucker's hot tub delivered; the result - perfecto!  We're still looking at quotes for the deck and stamped concrete - but at least the hot tub is covered.  Good thing for lines of credit.  The hot tub will be delivered next week and then the deck will be started, yippee!

     I saved the best for last.  The EEG results exclude Tucker having seizures - which is good as we won't have to add seizure meds to his list of medications, but bad in the sense that the only reason for the 'zoning out' and 'muscle spasms' is due to the deterioration of Tucker's brain because of the disease.  We are not oblivious to this, but it is very difficult to see the changes and that for the past month to month and a half they're happening so rapidly?  In two days, it will be a year since Tucker was diagnosed.  Don't get me wrong, I'm glad for all of the time we have with him; yet I had so much hope that he'd exceed the doctors prognosis... I still have hope but all the changes make it hard to keep the hope.  Please keep hoping that Tucker gets stronger and outlasts the doctors prognosis.

Wednesday, August 12th, 2009 ~

     I hope you are sitting down... I actually have a wee bit of 'good' news to tell you.  After the twins turned three on July 5th, I contacted Make-A-Wish to follow-up the phone call when they'd called me back in February.  I'm not sure where the process was before I called, but I was sent an extensive package to fill out regarding liability waivers, publicity waivers, information about the 'wish child' - our family, etc.  I believe forms were also sent to the doctor to fill out.  Unfortunately, last week Make-A-Wish denied Tucker's wish.  I was so upset and disappointed I did the only thing I knew how to do, the one thing I think I'm becoming good at... I acted as Tucker's advocate and sent in another letter requesting Make-A-Wish to reconsider.  By now, I have you all wondering what Tucker's wish was.  I wasn't going to share that until his 'wish' came true.  Tucker is no longer able to see more than 12" in front of him and we are not able to travel - well neither of these facts hinder Tucker's 'wish'.  We asked for a Hot Tub.  It is a "trifector" for Tucker:  Tucker has poor circulation and the hot tub would be very therapeutic for him; in order to bathe him, it's a two person job - I get into the hot tub and let Tucker play for a while, get him clean and then I pass him to Dave to dry him and dress him; finally, it is probably one of the few things left that we can do as a family.  Tori & Avery are getting so independent and with Tucker not able to really move or interact anymore they tend to walk right pass him unless I 'suggest' they say 'hi', or ask them to get something for Tucker.  So, for more than one reason, this is the perfect 'wish' for Tucker.  I had mentioned to some Mito Moms that Make-A-Wish had denied Tucker's wish, and they said that it happens more frequently than people know.  The last I knew was that they were 'reconsidering' Tucker's wish and we were asked to sign off on additional Liability Waiver and it had been forwarded to the National Make-A-Wish Office for consideration.  A suggestion was made that I apply to another foundation for Tucker's wish.  So, that's exactly what I did!  I contacted Children's Wish Foundation (no, not the same as Make-A-Wish, a completely different organization with different criteria for wishes to be granted).  Initially, Tucker's disease was not on the list of eligible illnesses.  I was told there were two ways to handle this:  either have Tucker's doctor submit a letter, or they would contact their own doctor and see if Tucker's illness would qualify.  Within a few days, I was advised that Tucker's illness - "Leigh's Disease" qualified for a wish.  Next they would send out a package and we would go from there.  After further conversation, they realized that Tucker's condition is rapidly deteriorating and this has become more of an 'emergent' wish.  I was asked if we knew what Tucker's wish was?  I explained that the perfect wish for Tucker, would be the hot tub and the reasons why (which I mentioned above).  I literally received a phone call later the next day, Tucker's wish would be granted!  Today, the Children's Wish Foundation purchased Tucker's hot tub.  We are so excited!  We told Tucker that his wish has come true and that he was getting a hot tub, he became so excited and began kicking his feet as though his was swimming in the hot tub, and squealing with delight.  Now for the necessary reno's to accommodate the hot tub.  I think our backyard will look terrible for the next couple of weeks - but hopefully it will be completed sooner than expected with plenty of time for Tucker to enjoy.  As a result of the Children's Wish Foundation granting Tucker's wish, I called Make-A-Wish to withdraw Tucker's wish as Make-A-Wish does not work with a family currently involved with another wish granting organization and they do not provide 'second wishes'.  I am not blaming Make-A-Wish and I know they have provided many children with wishes, but as I go through this journey with Tucker and our family, I realize that on top of adjusting to life knowing that you will out live your child, trying to balance life with your child, their siblings, your spouse and the multitude of information and emotions going through your brain, there are so many things that you take for granted that should be easy - but prove not to be; but considering everything a family is dealing with, one would think that receiving a 'wish' would be easy.  Yet, our experience and the experience of many others I have spoken to has proven otherwise.  I know so many supporters contacted Make-A-Wish when they realized that Tucker did not qualify for his wish last year due to his age... Please do not contact them, they are a wonderful organization that have helped grant many wishes - this is simply to inform you of our journey.  I could have easily waited to see the outcome of the "Appeal" to Make-A-Wish, but that's not me... I needed to make sure Tucker received his wish and was able to enjoy it.  Well, this has been the best news I have heard in a very long time.  I only hope that we receive 'good' news after his EEG tomorrow morning.  Keep your fingers crossed that Tucker isn't having seizures.  Before I forget, "THANK YOU so much Children's Wish Foundation for making Tucker's wish come true!"

Tuesday, August 11th, 2009 ~

     Well, last night I was able to get some sleep as Dave is on days off, and I took so sleeping pills.  Waking up I think I felt even worse.  It's been a rough day, I'm so exhausted.  Today, Dave and I met with Tucker's case worker and we will be increasing his nursing hours and also trying to find someone for night nursing.  Before now, there was absolutely no way that Tucker would allow someone else to comfort him at night... but now with him being on two sedatives (but still doesn't sleep) and the fact that he can't move or turn himself over it may be a good time to introduce a 'night nurse' so that Dave and I can get some sleep one or two nights a week?  So, the search begins for another nurse to add to our team.

Monday, August 10th, 2009 ~

     Tucker had his second ambulance ride this morning.  He was fine, the nurse arrived so Dave and I headed out to make preparations for Tucker's wish (trying to be positive that it will be granted), we came home within two hours and it was so upsetting seeing Tucker like that.  I was so scared.  I haven't seen Tucker look so bad, he was conscious, unresponsive, very lethargic and 'zoning in and out'.  I think Dave was scared as well, but he won't admit it.  Either way, we both knew Tucker had to go to the hospital.  So much has been happening so quickly - I haven't had much time to process everything that  has been happening over the past month.  My mind is spinning again, but this time it's also been taken over with fear.  Fear of not knowing whether or not Tucker is in pain?  Fear of not being able to comfort my son.  Fear of Tori and Avery building up resentment towards Tucker for all of the time he demands from me.  Fear of not being physically or emotionally able to help Dave, Tori and Avery through this.  Fear of the unknown?  Anyways, the end result was that they believe that Tucker is beginning to experience seizures and they referred him to have another EEG.  We were given the option of admission or going home as an outpatient and we opted as an outpatient as Tucker was brought back to his 'baseline' and we feel that he'd be more comfortable at home, with us, Tori and Avery.  We also had to discuss DNR orders three different times today and one extensive discussion.  Dave and I will not be sharing our decision as we feel like when you are picking names for your children, you never make everyone happy - so this is just for Dave, Tucker, his doctors and I to know.  Please pray for Tucker.

Wednesday, August 5th, 2009 ~

     Well, no Ortho 'staff' came in, just the same resident who relayed that he'd spoken with the 'staff' and mentioned that Tucker's shoulders are not dislocated just subluxing and because his joints are continuing to get more 'loose' and there is no muscle to hold the bone in place there was nothing that they could do.  I went down and told Dr. T's staff that Tucker was admitted and was hoping that Dr. T could come up and see him.  Dr. T came up and after examining Tucker confirmed that his shoulder is dislocated.  While I was showing Dr. T that Tucker's elbow's and shoulder's are subluxing, there was a loud 'POP' and Dr. T said that his shoulder wasn't dislocated any more because I'd put it back in?  I totally freaked out Dave and myself and I just prayed that I hadn't hurt Tucker.  Dr. T advised that this is all part of the disease and his joints will continue to deteriorate and sublux.  Since all of Tucker's urine, blood, nose and stool tests came back negative, there is really no reason to keep Tucker in hospital.  But since we were in under Ortho, we had to wait and see what they thought.  Later, we were informed that Ortho had passed us back off to Peds, so I spoke to the Peds 'staff' and it was decided that Tucker would be discharged.  As we were leaving, the Peds 'staff' was reading the Radiologist's report and she advised us that both of Tucker's x-ray indicated that both his shoulders are dislocated.  Poor little brave boy.  Why?  Why?  Why?  I don't understand, and there will be no one who will make me understand this.  We had an appointment with the Physiotherapist to show us the new way of lifting/carrying Tucker to ease the movement of his shoulders.

Tuesday, August 4th, 2009 ~

     I received a call from Tucker's support facilitator letting me know that when Tucker startled himself awake, he extended his arms above his heads and she saw a lump under his right arm.  I paged the on call pediatrician and told him and he advised that it sounded like it was dislocated.  He tried to explain to me how to put his shoulder back in place and it wasn't working, so we had to bring Tucker back to McMaster.  This admission wasn't a very smooth one and I was so angered by the whole process.  Generally, it is an easy transition between registration to triage and then direct entry to peds as Tucker is immune compromised so he doesn't wait in the waiting room, he goes directly into a room - as do other who are immune compromised.  This was not the case today and I couldn't believe we were seated in a tiny room with 3 chairs and a coffee table - a room the doctors usually use to discuss things with family members - or where aggressive patients are put.  There was no place for Tucker to lay down.  He can't sit - how was a doctor going to examine him?  AGHH!  Definitely not the way to treat Tucker.  We eventually were moved to a proper room, and were sent directly to X-ray.  Upon our return to the ER, Ortho came in and told us that the x-ray and the clinical exam showed that Tucker's right shoulder is dislocated.  So, Ortho advised that I'd have an anesthetist in to discuss the surgery shortly as Tucker would need to be put under in order to relocate his shoulder.  My tears flowed like wine at a a wedding.  Tucker is at the most fragile time in his life to this point and being put under poses certain risks to the 'average' person; but do to Tucker's hypotonia, and respiratory system it is much worse.  I had to call Dave to come to the hospital as he was home with the girls.  In the meantime, Ortho advised that they have no case studies for 3 year olds with dislocated shoulders and his senior resident has suggested that we x-ray Tucker's left shoulder for comparison to make sure that his left wasn't dislocated either.  Well, after the x-ray was completed, the Ortho doc was there and he showed me the x-rays.  Apparently they looked the same and he decided that neither shoulder was dislocated, so there would be no surgery.  Which was a relief, but upsetting as I had been so upset about the whole thing and it still didn't answer the large golf ball sized lump in Tucker's armpit.  Ortho said that they'd talk to their staff in the morning and he may come by to see Tucker himself.  Tucker was admitted and off to the ward we went.  Again, all the initial tests performed came back negative.  Let's see what tomorrow will bring?

Friday, July 31st 2009 ~

     Today, my old roommate - Julie, and her son have moved in with us.  They are relocating and their new home will not be available until September 1st - maybe a little earlier?  Having them here have pros and cons for each side when two families live together... so far, mostly good.  It's great for the kids and me, poor Dave!  Tucker seems to be inconsolable at times and has definitely decided that I am the only one he wants - always, which is difficult, but also makes me happy.  He has changed so much over the past month and a bit and it truly is heart wrenching.  I don't know how he does it and where his strength comes from, but he makes me proud!!  His shoulders/elbows seem to be really loose 'subluxing'.  It looks painfully, yet the doctors say it isn't?  It makes it increasingly difficult to pick him up as you really need to be aware of where his arms are, make certain when you are dressing him they won't get caught, etc.

     I've faxed in all of the paperwork for Make-A-Wish for Tucker.  Please keep your fingers crossed.  Since Tucker is no longer able to travel, we've asked for a 'hot tub'.  It has a 'trifecta' affect.  First of all, Tucker would benefit from it therapeutically (would totally help his poor circulation) - plus it would be very soothing for him; secondly, it will help us 'bathe' him as it is too difficult to bathe him without a medical bathe seat.  Thirdly, it is one of the few things the entire family can enjoy together.  We are really looking forward to Tucker receiving his wish.  Wish him luck!

Tuesday, July 28th, 2009 ~

     Yesterday was another unplanned doctor's appointment.  Our nurse did show up - thankfully.  But noticed a lot of the changes in Tucker that were giving me concern.  Tucker's heart rate was in the 160's, his respirations were in the 60's and shallow, starring on a 'fixed' thing for 4-5 minutes at a time, totally not the Tucker we've known.  So, of course with the nurse showing some concerns, that just increases my concern.  I then start email the doctor again.  Scratch that - I called, only to be frustrated with no-one answering.  I assume it's the end of July and everyone is probable on vacation?  Ten minutes later I get a call from a familiar voice... the doctor's assistant (can't remember her title, but she is fabulous and definitely not his secretary), could we get Tucker there in an hour - most definitely.  We pack Tucker, Dave, the nurse and I up and off we go.  Well, the short appointment ended up being 4 hours.  Not because we had to wait; but because Dr. T was concerned with these changes that had happened in a matter of 10 days, since he last saw Tucker.  We now have a suction machine at home for Tucker to help us when he is choking on excess mucous, etc., a request was put in for a Oxygen Saturation Monitor to be put in the home, we will stick with his current medications for now as it is a fine line to alleviate some of the pain in his limb or causing more mucous that may aspirate into the lungs?  A requisition has been filled out for Tucker to have another swallow study - oh joy!  We also been advised that Tucker should not orally eat any solids, meat, etc., for now at least until we get the study down.  He can however have some 'pleasure' foods that are thickened, such as:  pudding, applesauce, oatmeal, etc.  The best news... we are no longer able to take him out of the country.  I know, everyone is thinking, "What parent would want to?"  Tucker and Avery just turned 3 years old and we are currently filling out forms for his "Wish", which we were hoping to go to Florida.  Well, it's one thing to choose not to do something and an entire different ball game when someone takes the choice from you.  I'm not upset that the choice was made, but knowing that the doctor is concerned supports how I feel about all the changes in Tucker.  That is hard.  As a Mom, not a medical professional, I still hope that I'm wrong, because if I'm right - Tucker's not doing well.  I know some people would love to have a diagnosis for their child, yet even knowing that Tucker has Leigh's Disease 100% really means nothing as the doctors do not know enough about this disease.  Different patients with Leigh's have presented differently, had differing symptoms, etc.  So although Tucker has been deteriorating, it really doesn't tell us anything.  We just need to prepare ourselves for the worst, yet hope for the best.  At the end of yesterday's appointment we also met with the Respirologist's RPN to discuss tracheotomy vs. intubation vs. doing nothing?  Just some extremely difficult decisions Dave and I will more than likely be tasked with at some point - I'm praying much, much later?  But why should any parent be discussing these decisions for their three year old son, or any child for that matter.  What has this world come to.  Criminals go on to live a normal life span (some of them) yet children who haven't even had the chance to really dream, make friends, learn to do things don't get any chances?  I just don't get it?  It sure as hell isn't fair.

     So, Dave and I decided to take the kids out of day care for the day and brought them to the African Lion Safari.  The girls had a blast on the safari - we used our own van.  Tucker wasn't amused with the animals coming right up beside his window.  We went for lunch and then had a family picture taken and walked around a bit.  Tucker enjoyed the walk and the van ride to and from the African Lion Safari as we sing songs and we got some good video of it.  Other than that, the girls have a blast and Tucker has no choice but to sit in the wheelchair or be held by one of us.  I feel so bad for him, he has been shafted for life and any opportunities I would have liked him to be able to experience.  Maybe that is the problem - maybe it's only what "I" want him to do, but when you see all the other children running around, screaming with delight - it's hard to watch Tucker in his wheelchair, nearly emotionless and not wish that he could be out of the chair running around?  The girls totally loved the splash pad.  Season passes would definitely be worth it for anyone who lives close to the African Lion Safari.  All in all it was a nice "family day", and I strongly urge parents to take the opportunity once in a while to 'play hooky' with your family and enjoy a day together - don't plan it, just do it!

Saturday, July 25th, 2009 ~

     I'm still not back to a 100%, but luckily Dave is on vacation and able to help out - actually, he is pretty much doing everything.  Thanks, Dave - I really appreciate it.  Yesterday, Tucker's OT - Lowana and Motion Specialties rep came to the house, made adjustments to Tucker's wheelchair and we ordered his hospital bed.  Lowana advised that OT and PT's role now would be more for Tucker's positioning as opposed to exercises as Tucker's showing extension in his legs, his right side is now turning in like his left did, and we just need to make sure Tucker is comfortable now.  Not that I hadn't figured that out, but hearing it makes it more difficult.  I realize that I haven't posted in a while, but I have noticed many changes in Tucker that I wasn't ready to share, or talk about - not that I'm sure I'm ready to do that now - but many of you have sent emails asking how Tucker is doing?  Is everything ok, etc?  So, I will post this all today.  We have also been in contact with Dr. T and last night we finally took Tucker off the one med I didn't like and changed it for another that hopefully will work?  It seemed to allow him to sleep last night only waking up once, which is quite an improvement.  Let's see if it will continue to be a daily event.  Tucker isn't is 'happy' self very much and is much more clingy to me, if that is even possible?  I just wish I could take it all away from him - even if it was only for a day.  We are currently in the process of submitting his wish to Make-A-Wish and hope that it will happen much sooner than later.  Remember to give your kids/loved ones a hug and kiss and 'tell' them how much you love them - you just never know.  I will post pictures of the tournament soon.  Sorry about the delay.

Wednesday, July 22nd, 2009 ~

     We continue to have issues with nurses not showing up and without any notice.  I'm getting quite perturbed with it all.  I was scheduled for minor surgery today and thankfully I'd made other arrangements for Tucker.  I had asked Esmie's new employers if I could 'borrow' her, and thankfully the agreed or we wouldn't have had anyone for Tucker and Dave would have had to bring him with us to the hospital.  The agency is lucky I don't have the energy to fight about this today, but they will here from me.  I know people think when you need a nurse, you get them - I wish that were the case.  They sure add more stress to this situation.  You would think they would do everything possible to try and make it better?  Hopefully things will change next week; if not, I'm sure I will be physically in a better place to complain!!  Please continue to pray for Tucker!  Every little bit helps.

Thursday, July 16th, 2009 ~

     Last night when the rain was pouring down, I was so afraid how today would turn out?  Well, it was fabulous!  The weather was perfect, a little on the warm side but wonderful.  Things seemed to fall in place - considering that none of us had organized a golf tournament before, I've never even been in or to a golf tournament (and have only played the sport once - many, many, many years ago).  With the lack of sleep that I've had over the past 3 years, I couldn't fall asleep if I wanted to, I was very anxious about the day and hoping things would go off without a hitch (and praying that Darcy Tucker would show up).  Not only did he show, he was on time and brought one of his sons Cole.  It was better than I could have ever imagined.  Darcy was great, down to earth and extremely personable.  I think everyone enjoyed the opportunity to meet him and I sure did.  The day went off without a hitch, thanks to a couple of friends who volunteered to sit at the registration table:  Erica & Julie, and Renata & Marlena who sold raffle tickets and assisted me with the set up of the raffle table (actually Marlena did the fantastic job mostly by herself).  Once the tournament started, it was great seeing all of these golf carts depart to the two courses.  The guys and a few gals played golf as the sun beat down - I took a golf cart around and took photos of the foursomes.  It was a very surreal day - I don't think it could've been any better, but if anyone has suggestions please let us know.  Carlisle Golf & Country Club put on a spectacular dinner and everyone was literally stuffed.  Dr. Tarnopolsky came with projector in tote to give a 12 minute speech about Mitochondrial Disease and Tucker's "Leigh's Syndrome".  He did a superb job of 'dumbing it down' so that all of us could understand it and I even learned additional information about the disease.  I will be getting all of the invoices soon and will post the final tally being donated to McMaster as soon as possible.  Thanks to everyone who came out today, those who sponsored this event and those who donated - you made it a wonderful success.  We look forward to seeing you all and even more of you next year!

Wednesday, July 15th, 2009 ~

     Well, the two sedatives that Tucker is on, are not allowing him to sleep and in the morning leave him very lethargic and not himself.  I'm not liking these meds.  I spoke with the doctor and he says this should change in a couple of days as his body adjusts to the alterations in his meds.  As far as I'm concerned that if it doesn't help him get the rest he needs, I'd rather him not on them as these meds have changed his personality.  Since he's still not sleeping, I'd rather him have his personality back.  Tomorrow is the tournament and we were going to let the kids go to daycare in the morning, pick them up for photos with Darcy Tucker, bring them back to the daycare for lunch and naps and then I was going to pick up Tucker to drive around in the golf cart with me - but he's just too floppy.  So, once again, plans have to be changed.  Not that I mind, but I totally believe that Tucker has been given a bad deal.  I am amazed and so proud that he is still able to flash his infectious smile and continues to be so loving - it's just not fair!  Why Tucker, why our family? 

Monday, July 13th, 2009 ~

      Well, Tucker wasn't doing to well last week and started with a fever last Tuesday, among other things.  I ended up asking Dave's Mom to take the girls on Saturday night as I knew it was time to take Tucker to McMaster.  Tucker had a high fever with no other symptoms?  Tucker was admitted and after 10 pokes with the needle they were able to take blood to run some tests and then one additional poke to get an IV started - 11 pokes, poor Tucker.  After all of that trauma, the tests results are all coming back negative?  So, he has a high fever for some unknown reason?  We've been told that his constant yawning and frequent hiccups are symptoms that the abnormalities found in his brain during last years MRI indicate that those areas are starting to degenerate. Dr. T. came by this morning and changed up some of his Mito Cocktail Meds.  Which contradict what they are suppose to do.  As increasing some to help out the 'rigidness' in his lower limbs will likely make him more 'floppy' in his upper limbs.  He has also been introduced to another sedative, that should get him some sleep - finally.  So, now he'll be on two sedatives, and one will slowly get phased out.  Tucker's rental hospital bed arrived today and will remain until we are able to buy one for him.  Hopefully it will help position him a bit better during the night? Keep your fingers crossed.  I just hope that Tucker is feeling more like himself for the golf tournament.  He definitely needs to get stronger.

Thursday, July 9th, 2009 ~

      Tucker is not himself, but I can't figure out what's wrong?  I brought him to see Dr. MacNay on Tuesday.  After our appointment, Tucker was again 'recognized'.  It makes me happy that people do pay attention to the news, be it the paper or the t.v., and do know Tucker and about his rare and terminal disease.  I just wish there could be more done for him. Over the past two weeks, his left shoulder has been popping in and out of its socket.  Then this week, his right shoulder started doing the same.  He's had a fever that comes and goes, but no cough, no sneezing - nothing else.  Tucker can no longer hold his head up, it is either completely flopped to the front where his chin touches his chest, or it's back leaning on a chair, my shoulder, etc.  He has lost all of the words he did have and basically is in my arms or in his wheelchair.  It's very hard to see him deteriorate and harder yet to express my feelings.  Everyday, I know that if what the doctors diagnosed to be true, this will be our last year with  Tucker.  Yet, there are so many other children whose parents were told they wouldn't make it to their 1st, 3rd or 4th birthdays, who have long surpassed their prognosis'.  Yet, Tucker is deteriorating, almost as scheduled?  I know it's my fault for getting my hopes up that Tucker would prove the doctors wrong, but without hope - I don't have much.  So, I'll continue to hope that this is a 'passing' thing even though my 'mommy senses' are telling me otherwise.

Sunday, July 5th, 2009 ~

     "Happy 3rd Birthday, Avery & Tucker!!" 

      We celebrated their birthday with many family & friends at LaSalle Park in Burlington.  It was a wonderful day - a wee bit on the cool side, but I don't think the children realized with all of the running around everyone did.  It was a wonderful family day, and Avery & Tucker had a riot.  Avery loved running around with everyone and Tucker loved being passed from person to person for some love and cuddles.  It was good to see family and friends that we had not seen in a while.  Not to mention we went a little overboard as the twins did really get a birthday party last year.  Today, we are taking it easy.  We had considered taking the kids to Marineland, but with no naps yesterday, everyone's tired and being out of routine really takes a toll on Tucker.  I declare a Pyjama Day!!  Amazing, we all agreed ;)  One more event that must get finished - the golf tournament, and I really can't wait for it to come, be a success and be done... sorry - I'm wiped.  Need more time for me and the kids and Dave, of course. 

Saturday, June 27th, 2009 ~

     Home sweet home.  Only 4 days in hospital this time.  I hope we have another long reprieve from the next visit.  It's summer, we should be able to enjoy it with Tucker and the girls, not spend it in the hospital.  We've also made some plans to take the kids to a couple of day/weekend trips.  We want to take Tucker and the girls to St. Thomas, Ontario to see Thomas the Train.  I even bought him a train conductors dress-up outfit with train whistle for his birthday.  We are also planning a visit to Wild Water Kingdom - while it's summer and leave Great Wolf Lodge for the fall/winter.  For the next little while, I will be finishing up plans for the twins birthday party and the golf tournament - then I'm not doing anything for a while... except enjoying my family!

Thursday, June 25th, 2009 ~

     Yesterday, Tucker was admitted yet again to McMaster Children's Hospital.  He was doing so well, having not been admitted since the end of March, but I guess we knew it would happen sooner or later - I was praying for later, way later.  Tucker was constipated.  More constipated than you can imagine.  Apparently your bowel is only supposed to be about 1/4 to 1/2 inch in diameter, Tucker's x-ray showed it was about 4 inches in diameter.  So, he's been given an enema and is now on new medication to help break down the stool build-up.  Which may help for the time being, but over the long run, Tucker will need to remain on this med for life as it's been described to us that his bowel is as though Dave had put on Tucker's sock and taken it off - it will never return to it's original shape.  What else does my brave little boy need to endure and for what purpose.  While Dave and I were getting our breakfast this morning, I'd left Tucker with Dave while I went to get a muffin, a woman walked up to me and asked if that was Tucker?  I said it was and she told me that she reads my blog and wondered if she could meet Tucker - of course I said yes.  It's great that awareness is being raised although I am having so much difficulty understanding this or trying to find a positive outlook on this whole situation.  Why do so many innocent children experience such cruel diseases?

Wednesday, June 17th, 2009 ~

     Tori's last day of speech therapy is completed today, yeah - we get a break from Wednesday appointments.  I'm not sure if she'll be required to attend them again in the fall, but at least we get a break for the rest of the summer.  Dave and I have even noticed some improvements, which is wonderful - especially since she'll be started JK in September.  Avery seems to always want to do want Tori does, to go where Tori goes, etc., it's cute and makes it difficult at times - but definitely cute.  Avery's own speech has improved tremendously since being placed in daycare last October.  Definitely one of the best choices Dave and I made for the girls.  I can't wait to see the developments when they began full-time daycare at the beginning of July at the new daycare.  We had to change schools based solely on geography and convenience.  I hope they like this school half as much as they love the one they are in now (Little Angels in Waterdown).  Tucker isn't doing so well and I am noticing things that I do not like, his breathing is changing and he is getting a lot more floppy.  I hope this is just going to be a passing thing?  Sometimes I even feel he's in pain, but the doctor said his disease wouldn't be painful - I don't know if I believe that.

Friday, June 12th, 2009 ~

     Tucker had an appointment with Dr. MacNay today.  He has lost more weight (as I figured from being on vacation and he just doesn't seem to be himself?), but he grew 3.5cm, yeah!  We mentioned that Tucker's sedative's don't seem to be working again and only lasted about a month and a week - sleep is such a precious commodity around this house , for me anyways.  Dr. MacNay increased his dosage and we are keeping our fingers crossed.  I can't remember if I mentioned that we told our nanny Esmie that we wouldn't be renewing her contract due to financial reasons.  That was hard, she's been part of our family for the past two years and the kids love her.  But we can't afford both and Dave and I believe the kids will benefit from being in a daycare setting prior to them attending school.  Esmie seemed to be so understanding and we explained that we would assist her in finding a suitable family.  She is such a lovely person, we would love to be able to do more, but due to circumstances beyond our control we have no choice.  Considering that she had been working with us for nearly a year before we received Tucker's diagnosis she adapted very well to our family.  I wish her the best of luck!

Wednesday, June 10th, 2009 ~

     I have had the girls referred to a Child Life Specialist, to help Dave and I either prepare the girls for what is happening and will happen with Tucker and especially after in case Dave and I are not able.  That's not really what I'm trying to say... I don't know how we will be and I want what's best for Tori & Avery and I want someone who will be there, that they are comfortable with, that they will be able to talk to and get the answers they may need just in case.  Today, 'Tara' read a book about Jack's sister Molly.  Molly is in a wheelchair and attends the hospital a lot - much like Tucker.  So, Tara would ask, "Is there anyone in your house who has a wheelchair?"  and Tori would answer, "Tucker has a wheelchair".  The appointment went on about asking the girls questions comparing them to the story, Avery continued to colour in pictures of "Little Mermaid" and occasionally an  swered a question, but mostly just talked about irrelevant things.  Tori answered all of the questions and expanded quite a bit - I was surprised about how much she really understood.  Tara played a game with the girls and we left.  We have never discussed death in relation to Tucker and until it's closer we won't - unless of course the girls bring it up.  As I left the hospital and was driving down Cootes Road, out of the blue Tori says, "Tucker is going to die and go to heaven, I don't want him to go to heaven."  Not exactly the conversation I want to have while I'm driving.  I pull over and turn to her and say, "Yes, Tucker is going to die, but not today, and I don't think anytime soon."   Tori then looks out the window and looks like she's thinking of what she's going to say to me next.  I wait a minute and she hasn't said anything further.  So I tell her that I really want to listen to everything she wants to say, but it's difficult for me to do that while I'm driving.  I ask her if it's okay for me to drive home so we can talk about this more and Tori says it's fine.  I call Dave and of course he is not at home?  So, I call his cell phone and he's just at Weeks Home Hardware.  I told him that Tori has connected the dots and ask him to meet us at home.  We arrive at the same time as Dave and Tori is pretty quite.  We go in and sit on the couch and Tori cuddles into me, sort of sobbing but not crying and keeps saying, "I don't want Tucker to die", "I don't want Tucker to go to Heaven", "I want Tucker to stay in the house with me".  It was very heartbreaking and even I couldn't hold back the tears.  Dave and I just kept trying to reassure her that Tucker was fine for now, but if that changed we would tell her.  We explained that we wanted to try to be happy as much as we could so we have so many 'happy' memories of Tucker.  Tori and I cuddled for about 45 minutes and then suddenly it was like she was a different person and took off to play with Avery.  Hmm?

Monday, June 8th, 2009 ~

     While we were getting dressed for the funeral, I sat Tori & Avery down to describe what would happen at the funeral.  That Grandpa would be in a little box and that it would be placed into a hole (called a 'grave') in the ground to be buried, that it was just his body, but his spirit is up in Heaven.  Tori said, "No it's a big box, Grandpa's big!"  She is right, Grandpa was 6'3" tall and wouldn't fit into the small box - but I didn't want to discuss cremation with them - too confusing.  I let them know that Mommy might cry and that other people at the funeral might be crying and that it is okay.  Tori had some questions, Avery was busy playing with Jitters (our cat) and when there seemed to be no more questions, we packed into the van and made our way to Paris.  It was a dreadful day, overcast and spitting rain.  But the funeral was short and Dad kept the rain away until we arrived at the reception.  The Pastor did make references to a caterpillar during the funeral for all of the grandchildren - not sure if most of them understood but it was nice that he did that.  Tori was very afraid to come up and see the urn.  She didn't want to leave the beautiful pictures she'd made for Grandpa either, but Avery placed her picture and her rose in the grave.  Tori reluctantly placed her rose in the grave but wanted to take her pictures home - which was perfectly okay.  Tori was crying and I think that she was more afraid than understanding - I told her many times she could talk to me or Daddy if she had any questions and it didn't matter when, just for her to ask - but she kept quiet and clung on to me.  Tucker seemed to watch intently, I'm not sure how much he could see or understand, but he didn't make any fuss - so maybe a part of him does 'get it'?  Once back at the reception, the kids came out of their shells and were running around the hall like they'd known each other for years... many haven't even met, even though they are cousins. There was an uneasy awkwardness about the day, and I think everyone was thinking about Dad and the memories they had with him.  We left and drove home in the pouring rain - what fitting weather for such a somber day.  R.I.P Dad!

Sunday, June 7th, 2009 ~

     It's great to go on vacation, but it's even better to be back home where everything has a place and you get to sleep in your own bed - ahhh!  Thankfully I did all of the laundry before we left and all I need to do is put all of the laundry away, then I am hoping everyone will want to take an afternoon nap.  I know I need one.  Tomorrow is Dad's funeral and I can feel the emotions welling up inside.  I wonder how the children will be?  I don't know if it's better that they get to experience a funeral now or not?

Friday, June 5th, 2009 ~

     I can't believe today's our last day of vacation and tomorrow we will make the 6 hour drive home.  Hopefully the kids will be wiped out from all of the fun and fresh air that they will sleep most of the way home?  (I can hope, right?)  As far as weather goes, last Saturday was fantastic weather, too bad we spent 4 hours getting ready and packing the van/trailer for the trip and another 6 hours driving.  I wasn't feeling that well and spent the night vomiting.  When we awoke on Sunday the weather had turned and it was overcast with rain.  Monday's weather was the same as Sunday's - thank goodness the lodge has an indoor pool!!  The rest of the week it's been clear skies and decent weather.  There's a great children's playground is literally 150m from our front door and we have a clear view of it and most of the beach.  We have done a lot of walking around the Lodge (it's not the big, really - but it is very picturesque).  We brought up the kids bikes and Avery has graduated from a tricycle to a bicycle with training wheels "Just like Tori".   The parking lot is fantastic for them to ride their bikes as most  guests are probably out on the lake.  The kids love the indoor swimming pool and it is a nightly ritual.  There is also an indoor area for them to play with some toys - which was great with the 'yucky' weather.  Dave and I hired a guide for a few hours while the kids were napping and went fishing.  Dave caught 9 and I caught 7 (but I had the biggest one!)  but it was catch and release as the biggest one, which I caught ;) was just over 17 inches and in order to keep it, it had to be 20 inches.  Well, Dave and I enjoyed ourselves so much and the girls really wanted to go out on a boat, we've rented one for this afternoon, while Tucker is napping.  It's so emotionally difficult not to be able to bring Tucker with us, yet, why shouldn't we allow the girls this experience?  I feel torn when things like this come up.  But, that is why we've planned it for when Tucker is sleeping.  Then of course, after dinner we will all go swimming together.  Tucker can't stay in the water as long as us as he gets so cold so fast.  But he enjoys it just the same and wants to stay in - even when he's teeth are chattering and his feet are turning purple (very pore circulation).  I'm not looking forward to packing up and the 6 hour drive, but we will be home and Tucker will be back in his routine.  Don't get me wrong, he's been fantastic, but like most people - you just want to sleep in your own bed, and be in your own environment.  I must say the kids have behaved so well, that even some of the guests have made comments to us about how pleasant they are or how happy the are or how polite they are (and they are for the most part - until we get home! LOL)  Just kidding, we are lucky we've got some fantastic, kind, sensitive and polite children.  Oh, before I forget... if you know anyone who is a Toronto Maple Leaf Fan, or Colorado Avalanche Fan, I have received confirmation that Darcy Tucker will be attending Tucker's Time Charity Golf Tournament on Thursday, July 16th, 2009.  So, make sure you tell them to get their entries in - disregard the early bird entry fee, that was so we could get the teams all set up early enough, but whenever they get entered it will only be $150.00 / person.  Hope you are all having great weather.

Tuesday, June 2nd, 2009 ~

     Wow, it's been a week since my Dad died and it's been hard.  We're at my parent's timeshare near Ottawa (which was booked last year), and I keep wanting to ask my Dad about this or that pertaining to the area, or the lodge, etc.  But he isn't here.  I've even had a couple of dreams about him, which is odd as I don't dream much?  It was difficult to decide whether or not to go on vacation, but I feel that Dad would have wanted us to go - especially for Tucker and the girls.  I think going was probably the best thing we could have done.  Tori is having a difficult time with 'Grandpa's death' and the twins seem to have no understanding?  I don't know if that will change at the burial when we return or not?  We arrived here on Saturday and it's beautiful up here... it reminds me of Kenora.  Dave is excited about future fishing excursions and the kids are ecstatic about the playground and being able to swim everyday while we are here.  The weather was fabulous on Saturday, Sunday it rained, Monday was overcast in the morning, but by the afternoon it was a heavy downpour.  Dave says the weather reports are favorable for the rest of the week, yippee!  I'm not to crazy about returning to a busy house when we return, but I know we will have to go back!  But it's so peaceful up here.  I think our children are the only ones here as everyone else should be in school.  Which reminds me, Tori will be starting JK in September.  I can't believe the things that both she and Avery are able to do now and they are both expressing their 'independence', which at times is frustrating - especially when you're trying to go somewhere.  Well, I better getting going, as I have been typing while everyone else is sleeping and I hear the sound of tiny footsteps upstairs.  Have a great day!

Wednesday, May 27, 2009 ~

     Throughout my blog I have indicated that there were other stress factors that I couldn't discuss.  Well, my father was diagnosed with Lung Cancer last Thanksgiving, right after we received Tucker's diagnosis.  It's been a difficult time for our family and my Dad was such a trooper.  He was living at my sister's and my sister and brother-in-law did a fantastic job taking care of our Dad and so much more.  Unfortunately, the cancer spread rapidly and yesterday, my Dad lost his courageous battle.  I know he is in a better place and he is not in anymore pain. It was very difficult seeing Dad lying in the hospital bed - he's always been such a strong man, never sick, etc.  At least now, I know he is resting peacefully and will be able to go fishing & hunting whenever he wants.  Rest in Peace, Dad.  Tori, Avery and Tucker are sending you lots of hugs and kisses.  WE LOVE YOU!

Wednesday, May 20th, 2009 ~

     I know I haven't been 'keeping up' with the blog as much as I have wanted, but boy is it chaotic with all of the scheduling, cleaning, banking, groceries, appointments, etc without having a nanny that you know you can 'run' out and get whatever is needed.  I hope the government is that forgiving as I have yet to send in my taxes.  OOPS!  I definitely need to get that completed.  Well, nanny Esmie left on April 24th and is due to return this Sunday, May 24th.  It has been a busy month, but manageable for the most part.  Some of the house cleaning has lacked, as has the laundry, banking, etc.  But the kids and I are having a good time (most of the time).  I tried to put the Tucker's site onto the desktop computer, but that isn't working out like I had hoped.  My Dad was admitted to the hospital for a procedure to stop the fluid from building up in his lungs; but I'm not sure how effective the procedure was?  I must thank those of you that sent me emails hoping that things were going well with Tucker and that he hadn't taken a turn for the worse.  Well, Tucker has been doing well this month.  I've been able to increase his feedings, and he is still eating orally - so the doctors are confused?  Not to mention Tucker has gained a little weight.  Yippee!  We do know that he is loosing his vision.  Dr. T figures he has about 3-4' of sight, but when an initial assessment was done by the CNIB, they figure it's probably more around the 18" mark.  We know he can see 'shadow's and things move, just unclear about how 'in focus' his sight is?  We were also given information about not having any 'strobe' type lighting as it will often induce seizure activity.  So, no more Disco balls in the house, lol.  We also avoided the May long weekend fireworks.  I love watching fireworks, it's just not worth it for Tucker.  Tori and Avery have been out riding their bikes in the driveway and around the neighbourhood, and I put Tucker in his walker outside and he seemed to enjoy it much more outside than in the house.  So hopefully we can get him at least walking in his walker.  Our newest addition - Jitters (the kitten), has become a full fledge member of the family.  For the past 3 weeks, he has been walking around the house, whenever he wants, playing with the kids, and not hiding - which is a huge adjustment for him.  He lays wherever he wants.  Tucker loves him from a far.  If Tucker is laying on the floor and Jitter's approaches him, Tucker freaks out... but if Tucker is sitting on the couch with us, Tucker is so ecstatic about seeing and petting him (must be a size perspective).  I had to go back up to see my Dad this past weekend as he's been re-admitted to the hospital with a Urinary Tract Infection along with confusion.  It's hard to see a man who was never sick a day in his life like this.  Dave, the kids and I are supposed to be going to my parents timeshare in Ottawa at the end of the month... but we'll have to see how my Dad is doing.  We're also getting things prepared for the twins 3rd birthday party in July... time is really going so fast - anybody know how to get it to slow down?  That is one recipe I wish I had.  I can't believe it's the 20th of May.  Anyone entering the golf tournament has 11 days to enter with the "Early Bird Fees".  After June 1st, you're donating an extra $25.00 for a great cause.  I also have wonderful news for the tournament, but I can't ell anyone just yet, but wait 'til you hear!  I should go, I will try to be more consistent with the blog and thank you all for your emails while I was absent from the blog.  I really appreciate them and it helps me realize just how much support Tucker and our family have behind us - it does help give me strength.  Keep smiling everyone, hug your kids and tell them you love them - EVERYDAY!!

Thursday, May 7th, 2009 ~

     I've been trying to transfer my website onto my desktop, but I've been having some technical difficulty ;(  Nanny Esmie returned to the Philippines on April 24th for a month.  It's been hectic to say the least... add to that we've lost nursing hours due to nurses vacations and car troubles, so it's been much more chaotic than normal.  I've added one extra day to Tori's & Avery's preschool week to help and they love it!  Both of them are doing well at school, thanks to the staff at Millgrove Children's Center.  Tucker has another cold, but at least he has been out of the hospital since March 28th - yeah, which has been the longest time away from the hospital this year so far.  I continue to take Tucker to weekly private Physio Therapy in addition to his CDRP therapies and he seems to be doing fairly well. 

Sunday, April 19th, 2009 ~

     It's been a very long weekend... but I'm not sure where the time went?  Dave was working nights, so it's always difficult trying to get snack ready after nap time, then tidy up to get ready for dinner?  I'm running out of 'healthy' snack ideas for the kids that are easy and tasty.  I'm open for suggestions - I'll even take quick, healthy, tasty meal ideas as well.  Tori had her first sleep over without Dave or I.  She went to 'Baba's' (Dave's Mother) from Friday before dinner until just after lunch on Saturday.  Avery totally seemed lost without her?  So, Saturday, I left Tucker with Dave and I brought Avery with me to run errands.  We had fun and I think it kept her mind off the fact that Tori wasn't home yet.  We returned, had lunch with the 'boys' and the twins, along with Dave, went to bed for their nap.  Dave went to work and Tori came home.  It was a busy night, but the kids were in bed before I knew it.  This morning we woke up to have breakfast and get the family ready for the YMCA.  The girls have swimming lessons on Sunday mornings and started nearly a month ago.  However, I found out today that I've been bringing them to the wrong class all of this time... what is wrong with me?  Oh well, at least they're getting lessons.  Tucker goes in the pool if he's well... today was not one of those days, so I stayed home with him, as I'm still not well.  I started cleaning/vacuuming one room at a time, Tucker was using the broom to help me, it was so adorable.  Dave and the girls came home, we gave them lunch and I went out for groceries.  When I returned, Dave and the twins had gone for a nap and Tori was watching a movie.  I sat with Tori and she fell asleep in my arms, it was so nice to just hold her for such a long time - I know she still needs it as does Avery.  I heard Avery wake up and open her door and walk as quietly as any two and a half year old thinks that they are walking.  She then opened Tucker's bedroom door, and I heard her through the monitor climb onto Tucker's bed to watch his t.v. while he was sleeping.  As I listened, I heard Tucker stir, and of course, Avery took that to mean that he was awake.  I continued to listen and hear them babble back and forth.  Avery speaking as she always does, and Tucker trying very hard to repeat what Avery was saying.  Then I would hear some giggling, then silence as they'd watch t.v.  I gently placed Tori on the couch and I went to get the camcorder - but the battery wasn't charged - ughh!  I tiptoed upstairs and listened to the twins at Tucker's doorway, then Avery leaned over and "tickle, tickled" Tucker.  It was priceless and I so wish I had the camcorder - oh well, that's what memories are for, right.  I let this go on for about another five minutes, poking my head in and out as to not allow them to see me.  Then I went in and brought them downstairs for snack and then I began to prepare dinner.  It seemed like the whole day

Wednesday, April 15th, 2009 ~

     I've noticed lately that Tori is getting a little more clingy to me and wanting a lot more time with me, but this morning it really it home just how much she wants.  Tori had asked me to sit beside her at the breakfast table, which I normally do on the 'long' side of the table, but she wanted me to sit beside her on the 'short' side, so I said I would.  As I got Tucker's first cycle of meds ready, Tucker was calling out, "Mom, Mom, Mom"  Which means he wants me to hold him.  So, I told him to wait a minute, I'll finish making his meds and then he can sit on my lap during breakfast.  Well, Tori jumped in with an angry voice (you should have seen her face) and said, "No Tucker, Mommy is sitting beside me - I want Mommy time, you can sit with Nanny Esmie!"  I have never ever seen that side of Tori.  I told Tori that it was okay, that Mommy can still sit beside her with Tucker on my lap - there's plenty of Mommy to share with her, Avery and Tucker.  I know that any child can have pangs of jealousy between their siblings, but it really upsets me, because I really try to balance all of them as to not have that jealousy.  I don't want them to have any resentment towards Tucker or each other.  I guess I'll have to make more of an effort?  I've now been sick for 3.5 weeks and Tucker is almost at two weeks, so today I'm taking him to see the pediatrician as he has a pretty bad cold; I want to make sure it's not RSV, again.  I'm also trying to prepare myself for our Nanny's month long vacation back home... aghh! 

Sunday, April 12th, 2009 ~

     Happy Easter!  I hope everyone is enjoying spending this cold, but beautiful long weekend with family and friends.  I'm going to recap a little of last week to start.  On Wednesday, we met our new nurse - Judy.  Absolutely lovely, much like Sophie and I believe I may finally have two great nurses on a consistent basis - yippee.  Judy actually was able to put Tucker down for his nap, it took her nearly a half hour - but I wasn't needed, unbelievable.  Tucker only napped for about 45 minutes, but it was nice.  We also had Lowana (Occupational Therapist) and Shannon (Kinesiologist / Sales Rep) at the house to discuss some sleep systems to aid Tucker's sleeping and also to look into a bath seat to make it easier to bathe Tucker.  Tucker is finally too long for his bath tub, but can't sit in the tub alone (so he generally baths with me), which makes it a quick wash, and he is not able to play or enjoy himself like his sister's do.   We also discussed seating for in the house, as he can't sit unaided which means he's either in our arms or in his wheelchair.  I like to leave the wheelchair in the van as to not track all the water and dirt from outside into the house.  So, that's where we are at now as far as Tucker's ability.  Tucker is no longer able to ride on his 'Diego' car which has been his only independence for months - it's really quite sad.  His mind is so sharp and he is a smart little boy, so I can only imagine what goes through his mind as he feels like he is always falling when he is not in his wheelchair or in my arms.  Tucker had a Physio Therapy appointment at CDRP on Thursday, with Betty as well as a combined Speech appointment with Cindy.  We are going to apply for a Communications Computer for Tucker, as we are hoping that he will be able to press a button and have a computer speak for him - opposed to him just pointing to pictures.  I still have my cold and double ear infection which has left me unable to hear out of my left ear?  Probably not a good thing, but I can't get into the doctor's - so I will try to make an appointment next week.  However, now the girls have the sniffles and a cough; Tucker is the worse of course, and I hate not being able to give him something to make him more comfortable.  Thursday Tucker and I actually fell asleep for a couple of hours, I didn't think we'd even sleep - as a result, I missed another appointment with Tucker - aghh!  So, I went grocery shopping for all the fixin's for my Easter dinner on Friday.  We had Prime Rib, Mashed Sweet Potatoes, a Strawberry Spinach Salad, Corn and BBQ Potato Quarters with Red & Green Peppers, Mushrooms and Onions - very yummy.  Then there was dessert:  Raspberry or Chocolate Mousse, Apple Pie.  It was a wonderful day.  Everyone seemed to have a lovely time and it was great to see extended family that we don't see very often.  We even learned that my 17 year old cousin received a full Soccer scholarship to University of Maine and her older sister will be starting at University of Ottawa this fall.  By the time she graduates, she will tri-lingual.  I'm so happy for each of them!  On Saturday morning, the girls and I left for an Easter Egg Hunt at Waterdown Montessori School.  Tucker was too sick to go out, so he and Dave stayed home for some 'boy bonding'.  The girls had a blast.  There was a bouncy castle, tattoos, duck pond, bean bag toss, penny sale, etc.  Although it was nice out, it was very brisk.  Tori side checked Avery and Avery fell fast first on to the pavement which resulted in tears, a swollen nose/lip and blood splatter - poor girl.  The hunt was scheduled at 10:15am, but apparently was changed to 10:45am in Friday's paper which I hadn't read yet, so the girls had to wait.  Avery didn't wait so patiently but was happy to run around looking for Easter Eggs amongst the hundred or so kids.  We went home and had a 'lazy' day watching t.v., cleaning up and playing with the kids.  Then we all had a nap - sweet!  Today the girls were up nice and early searching for all the eggs that the Easter Bunny left and there were so many squeals of delight I was afraid they'd wake up Tucker, but they didn't.  We had a pancake breakfast, with chocolate of course and then we phoned the grandparents.  Later we will be going to Dave's sister's for dinner and the kids are excited.  So, have a wonderful day with your families - and don't forget all the hugs and kisses and the "I love you's", there's never enough to give.

Monday, April 6th, 2009 ~

     Wow, it's been a hole week that I've missed?  There's been so much, yet I've been sick so I haven't gotten around to the website, sorry.  Starting last Monday, Dave was on nights for 3 in a row... I was sick, and Tucker decided he didn't need to sleep - so Mommy didn't get sleep.  Which meant Dave and I had a few spats, totally over nothing, just because of lack of sleep.  On Thursday, Tucker had an appointment with Dr. MacNay.  We went over the new medication and feeding schedule after being discharged from this past hospital admission.  It has to all be signed off by a doctor for the nurses and dietician that come in to the home.  I again spoke to the doctor about his lack of sleep, and that Dave and I were finally ready to consider medication for him as you can tell how badly the lack of sleep is impacting our lives.  Finally, it was told to me in a way I could relate.  I think way back when I explained that Neurological disorders go hand in hand with sleep disorders, but due to his Gastro medications and the Mito Cocktail, we opted to try 'herbal' for his sleeping disorder.  But his dosage, which should knock out a horse, didn't seem to due anything for Tucker.  We had even tried numerous different ways of giving him the maximum dosage:  all before bed, breaking the dosage in half, giving it to him before we went to bed, etc.  Nothing was working.  Well, Dr. MacNay explained that most children wake up, play, read, go outside, whatever... all day long, which is physically fatiguing.  However, Tucker, sits in my arms, or occasionally is in his wheelchair - so as a result, there is no fatigue so his days and nights are probably screwed up.  So, by giving him a sedative at night, it will help us get our sleep, and his body the rest it needs regardless of his lack of activity.  So, we are willing to try.  Dr. MacNay just wanted to touch base with Dr. T to make sure we are all on the same page and if there is a sedative preference?  So, we are just waiting for the script.  Tucker's new feed seems to be doing okay and we haven't had any vomiting episodes since he's been on it, plus, he seems to be eating quite well.  We just keep praying that he will start to gain some weight in order to get stronger.  Tucker also had an ophthalmologist's appointment on Thursday and we went over his eyesight concerns again.  The doctor wanted to put Tucker under general anesthetic to see if the Optical Atrophy is just with the eye, or if it involves the connection to the brain.  After speaking with her, I opted not to have him have surgery as in the end, there wouldn't be anything done for him, it would just be for our knowledge and I'm not willing to put him at risk during a surgery for 'knowledge'.  The ophthalmologist will be advising C.N.I.B. who will in turn contact us for services for Tucker.  This past week, I have yet again forgotten about appointments I have booked, and have shown up for appointments I don't have?  Luckily, everything has worked out.  Go figure, can I still blame it on Mommy brain?  Our brand new 6 month old washer pooched out so I have laundry in piles almost to the ceiling now.  Oh, how I hate laundry.  Well, that's not all true, I can sort it, wash it and dry it (in the machine, of course), I hate folding it and putting it away.  Unfortunately, so does Dave - is it too early to get Tori and Avery started on laundry chores, lol - totally kidding.  We went to our nephew's 10th birthday on Saturday, with two sides of the family and it was great to see everyone, as at the last birthday Tucker was admitted in hospital.  I still felt terrible with this cold, but it's great for Tucker and the girls to see their cousins, aunt and uncles etc.  Dave and I also went out and bought some Easter decorations.  I've never really bought any before now, but given the situation, I want to celebrate all the holidays and we are hosting a dinner for 19 on Friday.  I'm so excited.  It's for my mom's side of the family with a couple of extras, but it will great for the kids.  I love cooking and haven't really been doing much with everything going on and everyone thinks I'm crazy, but my cousins have hosted holidays for years, it is my turn and it'll be great for the kids.  I can't wait.  Almost done... yesterday Dave was off, so we took the girls and Tucker to the pool for Swimming Lessons.  The pool time was a blast, getting everyone out and dressed utter chaos, but very good.  My friend and old roommate - Julie came down with her son, Chase, as he gets along well with my kids and it was a wonderful visit.  Which brings me to today.  We had our new nurse "Sophie" - it was her second time here.  She is wonderful, and seems to 'fit' our family well.  After dropping the girls off at daycare, I snuck in and went upstairs to do some chores, but I'm exhausted.  So I thought I'd try lying down for 1/2 an hour.  Well 3 hours later I woke up when I heard Sophie trying to put Tucker to bed for his nap.  I can't believe I slept.  That is the first time since we've had nursing that I've felt comfortable enough to try and sleep, I so needed it.  Yeah!!  We will be getting another new nurse on Wednesday... I hope she works out as well.  I guess this is what is meant by 'respite'.  Yippee!  Oh, I've added some sponsors to the sponsor page... feel free to take a look.

Sunday, March 29th, 2009 ~

     Such a busy but happy day.  I started this morning off by taking Avery and Tori to swimming.  Tori is actually in lessons but Avery is in a Parent 'n Tot.  They were both amazing, well behaved and did a great job for not being in a pool regularly.  I am such a proud mommy.  I plan to take Tucker on a different day, while the girls are in school, as I can't do three kids with only one of me.  Then Tori had her skating show.  Ten weeks ago, she'd never been on skates.  Skating was a parent and tot learn to skate program that I had Dave and her do together.  Today, she could 'march' on the ice without Dave's assistance, take a bow and do hand movements to the music.  She was beaming.  Avery was on the bleachers dancing to all of the music - man this girl's got rhythm!  Tucker, on the other hand, not so happy and as a result, I missed a lot of the show, but at least I saw Tori.  What a great day - it's been a while.

Friday, March 27th, 2009 ~

     We are home!  Tucker is happy to be home, but not yet 'himself'.  Among some of his sight, Tucker has experienced some 'tremors' during this stay.  I am hoping that this is from him being sick and not another sign of Leigh's Disease?  I'm just happy to be home, and very, very tired... g'night!

Thursday, March 26th, 2009 ~

     The pediatrician came in first thing in the morning, which is fantastic when you don't have to wait for 'rounds'.  He agreed with my thought process (plus I think that he'd discussed it with the Dietician), so Tucker will be started on his feeds of Peptamen.  We will start him slow and work him up to 27ml/hr for a total of 16 hours and if all goes well, Tucker can be discharged tomorrow.  Yippee!  Keep your fingers crossed.

Wednesday, March 25th, 2009 ~

     Well, Tucker seems to be doing better.  The plan is to increase his Pedialyte and begin his feeds tonight and hopefully get home.  At about 5pm, I had a thought... Tucker's dietician and I have been speaking of changing his feeds to something that is more easily digestible.  So, I suggested it to one of the resident pediatricians, who would pass it along to the night shift.  Well, the night shift came in, and told me that they don't 'change' things in the middle of an illness?  What illness?  All of his tests came back negative, Dr. T. doesn't believe it is all his disease, G.I doesn't think it's gastro... again no answers for the unexplained vomiting?  So, they changed his med schedule and are considering a different feeding schedule?  I disagreed with the resident as Tucker hasn't vomited since Saturday, and in my mind since he hasn't had any Pediasure, it would probably be in Tucker's best interest to do the switch of feeds now?  It was then suggested that I could speak with the 'senior resident'.  I received the same answers from this conversation and we would not be introducing his new feed tonight, but perhaps tomorrow - after they've spoken to the Pediatrician and the on staff Dietician (the same one who gave 6 cans of the new feed to try), they consider it....agh!  How frustrating.  Why put him back on Pediasure only to change him in the morning?  Then moments later, we were advised that there were no cans of Pediasure to be found.  Great, Tucker may get the new feed to try tonight.  Wrong... they decide to keep him on Pedialyte all night, and a plan will be discussed in the morning.  Which means Tucker won't be coming home tomorrow.  Damn.

Tuesday, March 24th, 2009 ~

    Yeah we are getting moved to a private room!  A lot more room, more quiet, and a toilet!  That makes this stay a little more bearable.  We even got a window with a view of Main Street - so we can watch all of the cars and trucks go by.  Not to mention the ambulances.  It's pretty sunny as well, so that is nice.  Jamie, our respite worker, volunteers at McMaster on Tuesday's and she also stopped in, which was good for Tucker.  Let's keep our fingers crossed that Tucker keeps everything down, gets his personality back and we can get out of here.  It would be so nice to go home.

Monday, March 23rd, 2009 ~

     We are still here and Tucker isn't anywhere close to being himself, he is very cuddly and whining only wanting me.  No more vomiting which is a good thing, but I'd really like to know what brought this on?  He has no other symptoms an it's hard to understand, why?  G.I doctors believe it's the progression of the disease, Dr. T. thinks it's a G.I thing.  All I know is something is not right and they should figure it out - especially if it isn't the disease and could be something that is fixable.  I guess I'm going to need to cancel this weeks appointments and re-book.  Life is still busy even in the hospital.  Dave works at his second job tomorrow and Wednesday, so not much relief coming up.  Dave' mom has been great stopping by with food for me for dinners.  At least I don't have to eat the 'hospital' food.  Not that it's bad, but it's always the same, and it's never what you really want.

Sunday, March 22nd, 2009 ~

     Admission number 4 in about 8 weeks!  You got it, Tucker was re-admitted yesterday.  At least I had one brief night of sleeping in my bed.  I'm beginning to forget how comfy it is!  Tucker vomited yesterday morning, and then his breathing became quite laboured, his urine output was poor and he wasn't eating.  So, in addition to the other tests they performed on Wednesday/Thursday, the doctor's ran some additional tests, which included x-rays and blood tests - Tucker's arm is so sore from the IV and the pokes, poor little guy.  I'm happy that with each admission, things are getting easier with the doctors, residents and nurses.  Most have either had previous contact, other nurses/staff have explained Tucker's diagnosis/prognosis, or have asked or taken the initiative to find out by looking at his website - that's fantastic!  The staff here deal with so many rare disorders, some they may never see again, but they really do care, and it makes our stay easier.  Tucker is famous, and normally would love the attention, but something is wrong and we don't know what as the tests are coming back negative?  This is the first time since our diagnosis that I've actually felt that this could be the beginning of the progression of his disease and that is so upsetting.  I know what is inevitable, yet I want more time - no I need more time to see my little boy.  Both of Tucker's 'usual' doctor's have been off, but Dr. T is back tomorrow and will come to see Tucker.  I have so many questions and I am so afraid what the answers may be.  Don't get me wrong, Tucker isn't at his worst; that happened last summer.  But the fact is, that I am not ready to face the reality.  Tori has been so obsessed with getting sick and 'throwing up'?  How do you explain that not everyone vomits like Tucker, and that there will be times that she may vomit and be okay.  About two weeks ago, she came with me to run errands and we had to go to McMaster to pick up Tucker's medications (there are only 5 places in the province that make them), on the way Tori asked me, "Who's sleeping in Tucker's bed?"  I answered her, "Nobody, Tucker will be tonight though."  She then replied, "No, at the hospital, who is sleeping in Tucker's bed?"  I held back the tears... she realizes that Tucker spends so much time there that he has a bed there too?    Not exactly what you want your four year old to be thinking about.  I want to tell her, but it's too soon.  I won't lie if she asks me straight out,  but how much do you tell them?  Thankfully I now have a name to contact for the Child Life outpatient and we just need the referral.

     This morning Dave brought the girls to the hospital for the 'switch' so I could take them to a friend's birthday party.  It's pretty bad when they know the way to the elevator, the playroom, the parking garage, etc.  But it was great to see them as I've stayed at the hospital because Dave has been working nights.  I dropped them off at the birthday party, drove home to have a quick shower, picked up some diapers and went to the party.  I didn't even want cake as I have eaten too much hospital food as late.  We stayed a couple of hours, and it felt good to have some adult interaction.  I brought the girls home to have a nap (because I needed one), but they just stayed on my bed watching t.v. as I tried to 'rest'.  My mom drove down and relieved Dave at the hospital and Dave's mom came to our house so Dave could go to work, and I returned to the hospital.  So much juggling around, my poor kids - we try to keep things so normal, but they know (well, I know Tori knows, and by their actions I figure they both know).

     Well, please keep praying for our little brave boy... he needs all the help he can get!

Friday, March 20th, 2009 ~

     Yeah, we get to go home today!!  Tucker hasn't vomited and he seems to be tolerating his feeds quite well.  The doctor's decided to cancel the MRI requisition as they don't think there will be much change from last July?  I beg to differ, but I'll run it by Tucker's doctors at upcoming appointments, something is definitely going on when we've had 3 admissions in the past 7-8 weeks that only one was a result of RSV/Noro virus.  That leaves two of them unexplained episodes of vomiting that the doctor says we can't keep blaming it on Gastrentitis?  I brought Tucker home and he ate some of my yogurt - which is normal and within an hour, he threw up again.  Unbelievable!  He then continued to vomit another couple of times throughout the day.  I called the pager and left a message - it went unreturned and Tucker's vomiting seemed to subside, for now... we'll see how he does tomorrow?  I hope he is okay, we bought tickets for the family to go to Disney on Ice in Toronto and we have great seats - it would be a shame to miss it.  Not that all of us will miss it, just Tucker and I; I'll let Dave take the girls with both of our Moms as when Tucker isn't feeling well he most definitely wants me... I'm sure Dave doesn't want to hear him calling for me all afternoon.  Keep your fingers crossed that he is better tomorrow.

Thursday, March 19th, 2009 ~

     Since it appears that Tucker's vomiting is under control, it's been decided that we will hold off on Tucker's Mito Cocktail, but try to go about his day as normally as possible with him eating snacks and meals followed by his 12hr overnight feed and maybe we can go home tomorrow.  Tucker's personality is back, and he is eating a bit, not like at home, but I'll chalk that up to hospital food and just being here.  Today, went pretty well though, all things considered.  He is now on his pump and we will see how he holds his feed - hopefully they stay down.  So far no more vomiting and that's fantastic.  If we're lucky, we will get to go home tomorrow.  This stay has gone pretty smoothly.  Especially from the admission, I think they been re-vamping the chronic list to get it to run smoother and this time I really noticed the improvement.  The doctors and nurses have been really great as well, and now that they have a couple of pages to read about Tucker's diagnosis/prognosis before seeing us, I don't have to keep going over it, just what's been happening since the last admission.  A much better process if you ask me.

Wednesday, March 18th, 2009 ~

     Just when you think things are going well with Tucker, another set back... Tucker woke up vomiting this morning and continued to do so until about 2pm, so I called his doctors - but both were off, so I had to call the hospital.  Tucker ended p being admitted to McMaster Children's hospital yet again ;(  He was a little dehydrated and we still don't know why he has these vomiting episodes?  At least I didn't let it go on for as long as I normally do, trying/hoping to resolve it at home - which we know never happens, or he would have been much more dehydrated and the doctors would have had to play catch up.  I just hope we are out by Saturday as we have tickets for the family to see Disney on Ice in Toronto.  I should have realized when he hasn't gained weight in 4-5 weeks 'something' was up.

Monday, March 16th, 2009~

     I have no idea were the weekend went?  The other respite worker was here on Saturday for the first day, and it seemed to go well.  Then my Mom came down for a visit.  The kids are always happy to see her.  Dave went to the Raptor game with friends yesterday and then worked at his part time job.  So, I took the kids and my Mom to the Grand Opening of a new indoor playground - Lil' Monkeys, in Burlington.  It was fantastic!  The girls loved it and I was able to get up into the gym with Tucker and go down the slide - he had a blast too.  Then when I got a little tired, he cuddled with me in the oversized leather chairs, it was so nice to watch the girls having fun and cuddling with Tucker and visiting with my Mom.  Then we went home and Tori & Avery have their friend Molly and her brother Owen over for a play date.  So they had an amazing time and I was exhausted.  Thank goodness for the crock pot.  I had a prime rib cooking all day - yummy!

     Our regular nurse was off today, gone on vacation, so I allowed them to send another RN for the day (so I could have the opportunity to meet someone new).  I'm so glad I did.  Tucker was happy, but with day and I at home, he didn't want to go to the nurse, but she was competent and friendly and if Tucker had more days with her, I'm sure she'd be great.  Unfortunately, she's overbooked as is.  Maybe this summer some of her hours will open up, as she tends to go to school with the kids she works with.  I might be able to steal her away.  The search for nurses continues.

Friday, March 13th, 2009 ~

     I'm not a superstitious person, normally... but Friday the 13th, still puts me on edge?  Today, however, was a good day regardless.  One of the respite workers we've hired, came over today, for her second day.  The kids absolutely love her, which makes my life easier!  I will actually probably leave the house next week when she comes over.  A friend stopped by today with a surprise, and it was a beautiful surprise.  Last year, while we were planning Tucker's funeral, I was looking into getting a locket to keep a photo of Tucker close to my heart.  Then in November, I saw Tracey at the BAMOM meeting and she was wearing a silver necklace that was very eye catching!  When I got the opportunity to see it, it had all the names of her family on it.  I thought it was beautiful.  When she called to let me know she wanted to come over because she had something for me, I had absolutely no idea.  It was a pleasant surprise.  So, I know have a beautiful pendant with Dave, Tori, Avery, Tucker and my name on it.  Simple and unless you get close, you'd never know it's something that I'll always cherish - Thanks!  I will take a picture and put in on the website, along with where you can find one for yourselves.

Monday, March 9th, 2009 ~

     Dave is working days today, and I intended on bringing Tucker to the fire hall to meet Kendra and her family.  But, Tucker's nurse - who when she didn't show up by 8am, I thought she wasn't coming, surprisingly showed up at 9am (apparently didn't set her clocks ahead).  So, no time to get there ;(  We will have to make arrangements with her family again - soon!  Tucker is still doing well, but seems to not want to have his afternoon naps.  So, I think we will try not putting him down for a nap and see what happens?  At least he continues to eat, let's hope he continues to gain weight.  We won't find out until next week when Phyllis comes by.  Other than that, just taking things day by day.  I seem to be getting headaches again and I am not sure why?  The had subsided, but out of nowhere, pow!  Jitters is still a very timid/shy kitten, but I can't expect two days to make any drastic changes.  The kids are so excited and can't wait until Jitters leaves our bathroom.  (The SPCA mentioned you keep them in a small space for a couple of days, let them get used to noises of us, the house, etc.)  Jitters is great around Dave and I, he will even come over to us, purr, etc.  We bring the kids in and out a couple of times each day, on their own and at the same time.  Just letting Jitters know that they live here and love him too.  So hopefully he'll get used to all of us quickly and have full run of the house.

Sunday, March 8th, 2009 ~

     Spring Ahead!!  We begrudgingly moved our clocks forward, leaving us with even less sleep than normal - it probably didn't help it was the first time since Tucker's fundraiser that Dave and I actually got out together to see some friends for an evening of euchre and adult socialization!  It was fantastic.  We also have an announcement to make... we have a new addition to the 'family'.  His name is Mr. Jitters, but we call him 'Jitters'.  He is a 6 month old male, domestic long haired kitten.  He is stunning, very affectionate - and still very timid.  Tori and Avery have been constantly wanting another pet since we lost Nikita.  Tori wants a cat and Avery wants a dog.  Dave and I would love to have another dog, but with all we are dealing with - it just wouldn't be fair to a dog.  So after much consideration we decided on a 'mature' kitten that is already litter trained, etc.  The kids adore him and Tucker can almost, sort of say his name (well, we know what he's saying).  I like that we will have pictures with the kids with Jitters and Tucker with Jitters which will hopefully create more memories for our family.  The kids are getting pretty anxious to go out to the pet store to get Jitters some toys!  This afternoon, I went to a 'Mito Mom' group.  With Tucker's condition, Dr. T has a list of parents, their numbers and emails who don't mind being contacted for support.  I guess there are a few families who have been in contact before, but I had invited them all to Tucker's Valentine's Dinner and Dance and a group came out and then it was decided to try to get together more often - so one of the moms planned it for today.  It was great to meet the other moms, chat, meet the kids (some with Mito and siblings without).  There are so many symptoms of this disease it's scary and many don't have a diagnosis other than they have Mito, so they have no expectations of what may or may not come in the future.  But I learned so much from the other moms who have a wealth of information and it was great learning things available to Tucker.  Thanks Mito Moms.  We also discussed the possibility of having a joint fundraiser, combining our resources for one awesome event... I'll keep you posted.  Thanks for hosting Suzanne, can't wait for the next one.

I forgot to mention one of the sweetest emails I received yesterday.  It was from an 8 year old girl named, Kendra.  Apparently Kendra's dad - Dave, had heard of Tucker's story and was telling his family about Tucker and Kendra took the initiative, used her own money to have a "bubble gum" raffle.  She raised $120.00 for Tucker.  It touched my heart unlike anything else, to have an eight year old girl do something so wonderful for another child, her parents must be so proud!!  We made arrangements for Kendra and her family to stop by the fire hall tomorrow to meet Tucker.  I can't wait to meet this sensitive, compassionate and special girl!

late entry - February 22, 2009 ~

     I can't believe that I forgot to mention the Raptor Game??  Tucker was finally able to go to a Raptor Game, it was a great day - albeit very cold.  One of Dave's friends, clients donated tickets to the Raptor Game vs. New York Knicks - thank you so much!  We had fantastic seats, second row up across from the bench - what a view.  I was surprised that Tucker didn't seem as excited about the game as we did.  But he sure liked the Raptor cheerleaders, click here for the envious picture!  He also got his photo with Raptor (the mascot). 

Sunday, March 1st, 2009~

     Looking at my last post, I can't believe I haven't added in so long - sorry!  Looking at the date, I can't believe that we're in March already!  I guess I will begin with Tuesday, February 24th; Tucker had a visit with Dr. Tarnopolsky and he can't believe how well Tucker is doing at present - we've realized that as quick as we say that, he takes a turn for the worse ;(  But it seems as though some parts of Tucker cognition may be showing some signs of improvement, yippee!  Not to mention he is such a 'happy' boy.  He is still continuing to eat 3 meals a day, plus some snacks by mouth and we still have him on the pump for 12 hours during the night to supplement what he may not be getting by mouth.  I went out and bought a juicer and have received some recipes and vitamin/probiotic information from other parents in similar situations.  As far as I'm concerned if it isn't going to hurt him, why not try?  We presented Dr. Tarnopolsky and his staff with the proceeds from the Valentine's Dinner & Dance proceeds, which totaled $7235.00 - what a fantastic contribution from Tucker's supporters.  After our appointment, we raced home, packed the van with luggage, food and the kids (of course) and headed for Great Wolf Lodge.

      For those of you who haven't bitten the bullet to get there - you should, it was quiet the experience.  The lobby itself has a world of interesting things for little ones - it's huge!  The staff were absolutely fantastic, friendly and very accommodating.  I know it's expensive, and we even brought our own breakfast and lunch.  But anywhere you go in Niagara Falls is a tourist trap.  We did go out for dinner one night, and ate at the lodge for the second night, the prices where comparable and we didn't have to get dressed for the outdoors, get packed in the van and go looking.  We were able to spend more worthwhile time at the lodge - having fun which was the idea in the first place!

     I realize I take a lot of time on this blog to discuss Tucker - but I do have two beautiful girls and I'm going to talk about them for a bit.  Tori is an amazing girl who just turned 4.  She is very kind and sensitive, she is very much a pleaser.  Her and Avery (Tucker's twin) are best of friends and look after each other no matter where we are.  When Tori saw the lobby of the lodge, I thought her eyes couldn't get any bigger - that was until she saw the water park/slides.  Not to knock Disney, but I think she preferred the water park/slides - as it is way more interactive.  She was so brave doing the slides that she could on her own and equally disappointed when she was told she didn't meet the height requirement on others.  She couldn't get enough of the water park.  Then there's Avery - my little rebel!  She was hilarious.  She was so apprehensive to go down the slides at first (generally she loves slides at the park), but once she went down - there was no stopping her.  She set her sights on the green slide and must have went down it at least 100 times.  Tori took turns taking Dave and I down the bigger slides she could go on with an adult.  Poor little Tucker, he wasn't able to go down any of the slides, but he liked going around lazy river on the tube with me.  Because he doesn't 'move', he gets cold so fast.  GWL actually has a 'kiddie' hot tub, so he was loving it up in there for most of the time.  He would lay on his back (wearing a life jacket), and float while kicking (splashing) with his arms and legs.  You should have seen his eyes light up when the bubbles from the jets went up his shorts - priceless.  I'm not sure if he loved the bubbles more or splashing me in the face?  We also took Tucker into the wave pool.  He didn't care for that too much unless the waves weren't rocking.  On our second night, we got the kids all in their pyjama's, gave Tucker his meds and hooked him up to the pump and then Nanny Esmie watched them while they had snack and watched t.v and Dave and I returned to the water park to have a little fun without the kids.  Oh my goodness!  I loved the Niagara Rapids Run.  It is like a roller coaster through water - totally recommend this one if you love roller coasters.  The nights were difficult with Tucker and Avery - they are not very happy sleeping any where else but in their own beds, in Tucker's case, our bed.  Which we allowed him to do, but he still woke up screaming on numerous occasions, so I went back and forth between him and Avery.  Every body is in a 'Mommy' phase at the present time.

     On Thursday, before coming home, we visited the Butterfly Conservatory, I haven't been to one in so long.  A butterfly actually landed on Tucker for a brief moment.  The girls were okay in the beginning, then became afraid?  In the gift shop, for the first time ever, I was able to find something for Tori with her name on it - a zipper pull.

     The kids slept for most of the way home.  The kids have now all come down with a cold, Tucker seems to have the worst of it - as usual.  He's even lost his voice - poor guy.  So for now I think that brings us up to date...

     I almost forgot, a representative from "Make-A-Wish" has contacted me.  I think they have received some phone calls as a result of the Hamilton Spectator Article.  I appreciate all those supporters who have gone to bat for us.  Last year, I was very disappointed to learn that Tucker didn't qualify due to his age.  But quickly realized that many services, sports, etc have stipulations so I prayed that Tucker would be here to be eligible this year - so far so good.  So keep your fingers crossed that Tucker gets his wish this year - I'll keep you all posted.

Friday, February 20th, 2009 ~

     Tucker had his appointment with Dr. MacNay today, I think I surprised him when he asked, "How's he doing?"  I can't remember the last time that I said Tucker was doing okay.  I actually had to say this twice because I think he thought I was joking around.  Seriously though, since Tucker's discharge from hospital on February 1st, he has started eating meals.  He has not done this since October, he hasn't even been having snacks with the girls for about 3 months, so him actually eating 3 meals plus snacks is quite confusing but comforting.  As a result, I haven't been syringing Tucker during the day, but he is still on the pump at night.  So, hopefully he will continue to gain, as long as the scale shows upwards movement, we will carry on with this type of feeding.  Oh, I forgot, we had a visit from Deborah and Ron from Acts of Kindness Network.  They had brought 3 beautiful handmade quilts for the kids made by Halton Quilter's Guild and were talking about helping Dave and I raise awareness and funds for Mitochondrial Disease Research.  They have come up with some fabulous fundraising ideas.  I am so happy that there are so many people taking an interest in my promise to Tucker.  Tomorrow, we have a 'respite' worker coming for a couple of hours to get familiar with our children.  Right now, only Dave, Esmie (nanny) and I are able to give Tucker his meds and set up his pump.  So it will be nice for Dave and I to be able to get out for a couple of hours here and there, if needed.  Keep your fingers crossed that the kids like her, as they haven't had much luck with the nurses ;(  On Sunday, Dave, Tucker and I will be attending the Raptors game.  I can't wait to see how excited Tucker is going to be at the game.  He absolutely loves balls.  I will bring the camera and as Dave says take hundreds of photos.  I'll be sure to post them.

Monday, February 16th, 2009 ~

     I must thank whichever politician implemented "Family Day"!  We totally lived it today and it was great.  Dave and I did get up and go to Crossfit this morning and later I did go out to pick up pizza for dinner!  Other than that, we all had a fantastic day!

Sunday, February 15th, 2009 ~

     Who knew that birthday parties can be so tiring.  In the past, we've have Tori's last parties at and indoor playground; but, with Tucker's diagnosis and his inability to take part, I just couldn't knowingly book a party for Tori, her friends and Avery jumping around and having fun while Tucker sits back and watches.  So, we invited two of Tori's friend's - only one was able to attend.  So, Molly, her Mom and brother came over for a princess party.  I had crafts to make wands and crowns, cupcakes, dress-up and everything.  Well, the girls wanted to play dress-up and had a fantastic time.  Crafts were put on hold - but fun was had by all.  Again, it was brought to my attention that there are many families in the world suffering, some in similar situations - some better, some worse - the thing to remember is that they are all equally important.  Some people choose to keep their family lives private... I didn't want to for the sake of Tucker and other children like him.  His disease is so rare, 1 in 500,000 it needs to be known about.  Awareness has to be raised and so do funds so that doctors and researchers can hopefully find a treatment or better yet, a cure.  I get emails from people, or people tell me how strong I am... I don't think of me like that at all.  I am doing this as a promise to Tucker, a little of my heart breaks everyday for what is to come.  This is a way for me to cope, a way to get me out of bed in the morning and remember to make each day 'count'.  Don't get me wrong, I love receiving the emails, they offer support; my blog is a way for me to vent and keep everyone updated, but the site is for Tucker and to raise awareness of Leigh's Disease.  After Tori's friend Molly left, we had about an hour to clean up before the family arrived for dinner (thank goodness for crock pots) and of course cake!  Tori loved all of the gifts and seeing Baba, Grandma, Uncle Joe, Muriel, Aunt Michelle, Uncle John and her cousins:  Jackson and Daniel.  Another night of sugar rush and late getting to bed.  I sure hope the kids sleep in a little tomorrow and looking forward to a pyjama day.  As I read my blog it sure does seem like we have a lot of pyjama days?  I hope everyone else does the same with their kids.  It doesn't mean we lay in bed and do nothing, we play with the kids, watch a movie, whatever, we just don't go out!  No clock exists on our pyjama days, with the exception of nap times and bedtimes.  We totally do what the kids want to do and let the day take its turns.  They are a lot of fun - no pressure.

Thursday, February 12th, 2009 ~

     My little girl turned 4 today!!  I can't believe it's been four years, since my water broke at work!  She is such a shy, wonderful, smart & caring little girl (the list goes on and on).  She will be starting junior kindergarten in the fall - boy, how time flies!  Today, I showed up at her preschool with cupcakes and balloons in hand for each of the children - Tori was so happy!  I realize so much time is spent with Tucker and his various appointments - she has to feel some of the time taken from her and Avery.  I really try to maintain fairness, but I do tend to leave a lot with Tucker in tow for way more appointments.  So, today was all about Tori and her very special day.  I hope I succeeded?  Tonight, Tori was given the option of picking where she wanted to eat out.  I should have thought that one through first, giving her a couple of choices.  But, before I could correct myself, she picked, you guessed it "McDonalds"; just like every other four year old would.  Oh well, it's her day.  McDonalds was a blast, and we invited our friends with their children to join us.  Thank goodness for the indoor playroom.  What an exhausting day, the kids went to bed way too late, but very, very happy.  Speaking of which, so should I.

Wednesday, February 11th, 2009 ~

     I don't know if I mentioned this, but as a Christmas gift, Dave and I joined 'Steel City Crossfit' in Hamilton.  I'm a an emotional eater and dealing with the unknowns and then finally getting Tucker's diagnosis, hasn't helped.  So, we joined together - it's a much better workout than I'd ever get in a gym, and it helps me release some stress, I hope.  Anyways, after class today, I checked my phone, and I had an email from a caring citizen who had read our story in the Hamilton Spectator today.  I was excited, we had the interview last Friday, and I have been looking forward to raising more awareness.  So, I called my hubby, and my mother-in-law, only to find out it was much better than I could have hoped for.  Our story made today's front page of the Hamilton Spectator.  This totally made my day.  You can read the article here.  I went immediately to the closest gas station and bought about 8 papers, to send to family members.  I was blown away... the article started on the front page and then continued onto A4.  As a result of the article, I have been receiving emails and phone calls from caring and concerned individuals - thanks to you all for your support.  Well, I have to pack up the twins and take them to the orthopedic surgeon... will blog later.

Tuesday, February 10th, 2009 ~

     Phyllis came today, and Tucker is doing great!  He even gained some weight after being discharged on February 1st.  He is know 10.52kg's.  I know it's down from 11.18kg, but he's making a slow, but steady incline.  So as long as he continues his upwards trend, I'm a happy camper!  He even continues to eat more food daily, which is an amazing improvement for him.  We've got an appointment with the orthopedic surgeon for Tucker and Avery tomorrow and then therapy on Thursday - which is Tori's 4th birthday - she's at quite the fun age right now!

Sunday, February 8th, 2009~

     I was right, the feeling of relaxation didn't last long, but what a feeling while it did.  Today, I uploaded the photos I had taken of couples and groups during the event and put them into a video, click here to enjoy the video.  I know, everyone wants to know how Tucker's doing... he seems to be doing better.  Actually, better than he has in a long time.  Dave thinks the virus he had cleaned everything out.  It must have as Tucker hasn't eaten for pleasure since before we left for Disney back in October, and now he will it an actual meal, more than once a day?  So, hopefully his weight will go out for the weigh in on Tuesday.  I hope he keeps it up, I'd much rather give him 'real' food than feed him so much through the G-tube.  He hasn't changed about wanting me, and unless you've been here to see it, you'd never believe how much he clings to me, even when Dave is here.  Nights are still the same, but he doesn't seem to be waking as frequently as before, but we are almost maxed out on the Melatonin.  I remember when he was in the hospital, one of the nursed questioned me on Tucker's Melatonin dosage... she takes less than a third of what we give Tucker and she said the dosage we give him should knock a horse out.  Well, it doesn't knock out Tucker.  All in all, Tucker seems very happy to be home and with his sisters.  Avery and Tori are some what out of sorts, but I keep hoping they'll come around.

Saturday, February 7th, 2009 ~

     Oh, what a night!  It was fantastic, better than I could have hoped for.  Thursday night was chaos, I was up until 1:30am printing off my info sheets for part of the centerpieces - as we didn't hear the delivery guy ring the door bell in the morning, so I couldn't pick up the paper that had been donated by Formcor until 6:30pm.  I wasn't sure I'd get it all done.  Not to mention, on Thursday afternoon, I received a phone call from the Hamilton Spectator wanting to do an interview regarding the fundraiser.  Not a problem, except they wanted to meet Friday morning - not realizing the event was on Friday, February 6th, they had thought it was on Valentine's day?  Oh well, so Friday morning we started out behind the eight ball.  It was a day of playing catch up.  Thankfully, I had my trusty 'sidekick' Tara with me.  Seriously, she's a great friend.  So, we picked up the flowers - not thinking we had enough, but we had plenty and they were absolutely perfect for the look we were going for.  Thanks Renata for suggesting 'real' flowers opposed to silk.  We drove into Mississauga, picked up some tickets/money and auction items, then set up the centerpieces on the tables.  Silent Auction Partners was there setting up, you should see how many beautiful items there were - it was going to be a great night.  I don't know how we did it, but we drove home with time to spare.  I decided I was going to go and get my hair done in an 'up-do' and I am so glad I did.  First of all, Sandy stayed beyond her work hours to do it, then it was done and it looked amazing and I wasn't stressed.  That was a miracle in itself!  I went home got ready and Dave and I left for the event.  Dave was surprised how well I cleaned up!  I forgot to mention, yesterday morning, Global news called, they were hoping to show up at the event with a camera crew to interview Dave and I... I was so excited, that would be amazing coverage for Tucker and Mitochondrial Disease.  However, I was left disappointed as they never showed up;(  Maybe next time.  That brings us to the event.  Everyone looked fantastic all dressed up, plus they were surprised with the convention centre.  Because the Convention Centre is still so new, not many people have been inside - it's quite elegant!  I had deleted my speech by mistake and had to wing it, which was better than I thought.  The food was amazing, the auction was entertaining and Dr. Tarnopolsky explained the disease better than I ever could.  Then we all danced and it was a 'perfect' evening.  Which brings me to this morning... I haven't felt this relaxed in months, maybe even years.  I want to savor this morning as I'm sure it won't last long.  But it is wonderful just having Dave and I at home with the kids, in our pyjama's, watching movies and playing.  I hope that everyone enjoyed the event as much as I, and I want to remind you to send me your names, addresses, postal codes and phone numbers to kari@tuckerstime.com so that I can give McMaster the receipts to issue.

Wednesday, February 4th, 2009 ~

     Chaos, that is the word I've chosen to describe the plans for Tucker's Time Valentine Dinner & Dance.  I've got so much to do and so little time to do it.  I don't even know where to start.  Thankfully, prior to Tucker's hospital admission, I had purchased all of the items I needed for the centerpieces - they just needed to be put together.  I have some great friends, Tara & Renata, that offered to give me some assistance.  Renata was the first to arrive, and I was already in 'crazy' mode, as the Grand Victorian was calling, as I hadn't sent them my signed agreement or seating arrangements as yet (they were supposed to be in on Jan. 23rd - oops!).  So, Tori entertained Renata while I tried to balance my Excel program with my floor plan and kept being out by 20 odd people - how does that work exactly?  Well, Tara arrived only to try to help me figure out this mess, and thankfully she confirmed that I was indeed out by 20 people.  At least I was consistent, but why?  So, the three of us sat at the table to figure out the error.  Finally, I realized that people had purchased tickets for people I did not know, and didn't have their names - whew.  Next task, the centerpieces.  Which was the reason they were here to help me in the first place - second crisis, the centerpieces were not a hit.  So, we decided to ditch the silk flowers, but where will we get fresh flowers in one day?  Well, a call was made to Country Flowers and gift, and they were donated for our event - how generous!

Tuesday, February 3rd, 2009 ~

     Dave an I opted not to attend the funeral, as we had a difficult time yesterday after the visitation.  I also had an appointment today.  I knew where the funeral was taking place; but I wasn't thinking when I drove to my appointment.  As a result, I ended up driving right past the church, and I began to cry.  I was so happy to see that they had a lot support from friends and family.  It just doesn't seem real - it's most definitely not fair.  For what ever reason, I can't seem to get my head around why such tragic things happen to sweet, innocent children?  Please say a prayer for Mason, Mike and Alisa.

Monday, February 2nd, 2009 ~

     Today Alisa & Mike are having Mason's visitation.  I really want to go to show my support, but I have mixed feelings about attending - more fear really.  Dave was waiting to hear if I'd decided to go or not.  At 11am, I decided that we should go, so we got ready and went to the funeral home.  Part of the fear is that Mason's visitation was at the funeral home that we'd made Tucker's preparations at.  We went in and gave our sympathies to Alisa & Mike, they seemed to be so strong, my heart was breaking for them.  Mason was about a week away from his 8 month 'birthday' - no parent should be going through this.  I have never attended a visitation for some one so young.  It was done beautifully.  Dave and I sat in one of the lounges watching a video created of Mason.  He was such an adorable little boy.  For everything he endured he was so brave.  Part of me couldn't help thinking about Tucker, wondering how Dave and I will be?  I don't know how I or any parent copes with the loss of a child?

Sunday, February 1st, 2009 ~

     Tucker came home today, yippee!  We were seen by the doctors on rounds at about 2pm, we were told Tucker was getting discharged - they just needed to do the paperwork.  We sat for another two hours, waiting, but no one came - so we packed up Tucker and took him home.  The girls were so excited to see him.  I was so happy to see the girls as well, 'Home Sweet Home'.  Let's hope we stay here for a long time.  I had a nice long, hot bath which helped me relax and now I can't wait to sleep in my bed!  Good night!

Saturday, January 31st, 2009 ~

     I can't believe that the first month of 2009 has come and gone, and of course Tucker started the year off with being sick - I hope this isn't the trend for the remainder of the year?  The girls came and visited Tucker last night and it was good for all of them.  Avery seemed a lot more calm being able to finally see Tucker, and Tori was excited to scout out all of the toys the hospital has.  Tucker is out of isolation so at least we didn't have to stay in the room.  I on the other hand have been an emotional wreck.  First of all, the doctors have mentioned discharging Tucker on two separate occasions but my 'spidy' senses says NO WAY!  Although Tucker hasn't vomited since 3pm yesterday, he is still not tolerating 1/2 of his feeds - what will happen when we get him home?  Let me tell you what will happen, we will end up bringing him back and waiting in the ER for another 20 some odd hours.  Thankfully the doctor understood and listened to my concerns and Tucker will be staying in hospital until he his tolerating his feeds fully.  So, here I sit with my thoughts and cry.  I am having a difficult time now that Mason has died.  I can only imagine what Alisa & Mike are going through, but knowing that I am one day going to lose Tucker way before his time is so difficult.  Being here at the hospital has brought other thoughts to mind that I had not yet thought about.  Dave and I know we have to make a decision about whether we want Tucker at home when the time comes - or would we want him in the hospital.  We have friends that have done it both ways, it's a very personal choice.  One we have thought about, but don't know the answer to?  Then with Mike, Alisa and Mason, my mind has been in overdrive.  I know on the 4th floor in Labour and Delivery there is a room, the 'Victorian', that if you deliver a healthy baby, that you can stay in it with your husband and baby, there's a double/queen bed, t.v., your own washroom, etc.  But they do not have an 'end of life' room?  Why is that?  It's just a room, no different than any other hospital room.  NO double/queen bed, no microwave, mini-fridge, no bathroom with a shower, etc.  Parents do not want to leave their child, but are almost forced to in a sense.  I'm not condemning McMaster, just confused that no-one had thought about this with all of the new renovations?  I mentioned my thoughts to a few people and one person asked, "Would you want it to be known why you were in that room?"  As people would ask, "Why do they get that room?"  I understand you may not want to be singled out, but having been in the hospital as much as we have with Tucker, the parents have a good idea of what is going on with other parents children.  Some talk, sometimes it's just obvious.  Either way, all of our children are there because they are sick, no one would want to be in that 'room', but if it came down to my child's or anyone else's child, I'd hope that it would be the most comfortable for the family that it could possibly be?  Again, I know it's a personal opinion.  But this is just one of the many things going around my head.  There is no easy way to say this, and I know that unless you've been in our shoes, you've never even given this a thought... what happens if Tucker dies at home or at the hospital, what happens, what is the process?  I know it sounds so morbid to even think of these things, but I do.  I don't want Tucker laying in a morgue.  If we allowed him to die at home, does our home become investigation where we are locked out of our home?  I have so many unanswered questions and emotions are getting the best of me.  Maybe spending a week straight in the hospital isn't good for me either?

Friday, January 30, 2009 ~

     It was so nice to come home see the girls, do 'circle' time (our bedtime ritual).  But around 10pm, Avery started crying and screaming.  I don't know if she was having a night terror or what, but she wouldn't let me touch her, hold her, talk to her - nothing I did would console her, which added to the guilt I feel for not being here when they were sick.  I brought her in to our bed to sleep for the night.  When she woke up, she was fine and was giving hugs and kisses?  Dave called and Tucker continued vomiting and the doctors don't know what to make of it?  They think it's still the virus, but the only way to confirm is by doing more blood work - poor little Tucker ;(  I'm trying to get things done for the fundraiser, do laundry, pick up some groceries and get back to the hospital.  I'm thinking about bringing the girls to see Tucker, as I think something is going on with them and if they could see him, I think they'd feel better.  I don't want to subject them to any viruses, but they really need to see their little brother.  I think Tucker would love to see them - it will be harder for him when it's time for them to leave though?  What do I do?  What is the right answer?  Please pray for Tucker!

Thursday, January 29th, 2009 ~

     Tucker slept well last night and woke up in a great mood.  I'm praying that today will be the day we get to go home.  Tucker gave some of the volunteers a 'high five' which is the first time since his admission last Friday.  Tucker is on half Pedialyte and half Pediasure and I hope to get it up to 3/4 Pediasure and 1/4 Pedialyte and the for the piece du resistance... total Pediasure.  Once Tucker is tolerating that, we can go home.  We are so close to, I can almost envision hugging Tori & Avery, sleeping in my own bed, and getting things ready for next week.  Tucker had to get blood work done and of course it's always hard to get blood from collapsing veins.  It was a dreadful experience that failed.  He then had to have a 'heel' poke in hopes of getting blood.  The doctors and I wanted to make sure that his gases and lytes were back to normal before discharge.  The doctors gave me the option of taking him home tonight - but my stomach isn't in agreement, spidy senses are saying 'no' to discharge, but seeing Tucker getting his personality back, and looking otherwise healthy makes it difficult.  Thankfully, the doctor came back, saw my reluctance and decided for me that one more night would be beneficial and we don't want to risk a re-admission.  Dave took leave for Friday, Saturday and Sunday, so Dave will be spending the night tonight so that I can go home to see the girls and sleep in my own bed - yippee.  I got in the van, knowing that Tucker has had a great day and will likely be coming home in the morning, then 20 minutes later, Dave called... Tucker vomited.  What is going on?  Why is this happening?  It has been such an emotional day for me.  I debated adding this entry, but the little boy I have been asking for everyone to pray for, lost his battle today.  He fought so long and hard, but he died earlier today and is in a place without pain.  I know not everyone has different religious beliefs, and although I question God daily, I want to believe that Mason has earned his 'Angel' Wings.  Please continue to pray for Mike & Alisa during this tragic time in their lives, pray for them to stay strong for each other.  Mike & Alisa, I am so sorry for your loss and wish I could some how lessen or even take away your pain.  I continue to pray for Mason, you guys and your families!

Wednesday, January 28th, 2009 ~

     Well, Tucker is starting to getting his personality back, a bit... and that is encouraging as I'm tired of being in here - I can only imagine how he feels.  Tucker had a bowel movement today (I know, so disgusting) and if he has another one, then there is a good chance of us getting out of isolation!  Which translates to walking around the hospital, playing with other toys, etc.  Keep your fingers crossed.  Dave is on course for three days, so we aren't able to trade off.  Esmie is doing double duty and I am missing the girls terribly.  I know they can't possibly understand, I just hope they know how much I love them and miss them - I call them a couple times a days, but it just isn't the same as wrapping my arms around them giving them hugs and kisses.  Not to mention, they still have sore tummies ;(  It's so hard being a mommy and I am in the hospital with one of my sick children and I have two others that are also sick that I can't be there for.  How unfair is that!  Tucker was doing better today, and I was hoping he'd be discharged tomorrow.  That all changed when he threw up again.  Back to square one.

Tuesday, January 27th, 2009 ~

     The night did not go so well, you'd think that when you're sick and in the hospital that you'd be able to get rest to get well, but the nurses have to do their jobs, which means every few hours they are in your room taking vitals, etc.  Tucker's stool sample had come back and he has the 'Noro' virus.  Which is one of the nasty bugs they don't see very often, usually lasts about a week.  That being said, Tucker is isolation - great!  As if being in the hospital wasn't bad enough, now he can't even leave the room, and when people come in, they have to be gloved and gowned.  My poor little buddy!  Tucker still isn't eating, and continues to loose weight.  I am growing more and more concerned each day.  I haven't seen the girls since Friday (with the exception of Sunday for a couple of hours - and we were all sick).  The know something is wrong with Tucker, and I try to comfort them.

Monday, January 26th, 2009 ~

     Well, I came home yesterday as I wasn't feeling well and thought that I had caught what the rest of the family had.  Dave relieved me at the hospital as he was at the tail end of whatever bug he had.  The girls still weren't feeling well, so we had a pyjama day, they watched t.v. and I laid on the couch.  Dave called to say that the nurses gave him the option to discharge Tucker and since he was looking better, Dave opted to bring him home.  I was not happy with this decision, as Tucker was still not taking in what he would at home.  The nurses said that we could put up feeds to normal when Tucker came home.  So we did.  Four hours later, Tucker was vomiting and I was on the phone to the hospital.  The pediatrician suggested we have Tucker fast for a couple of hours to give his tummy a break.  We did and he then Tucker began to vomit again in the morning.  I then called his pediatrician and we decided to run Pedialyte through his pump; unfortunately this did not work, and by 1:00pm, Tucker had vomited 9 times in 6 hours - poor little guy.  So, back to the ER we went.  Thankfully we didn't have to wait another 26 hours for a bed.  We were up to the ward in 5 hours - Dave was so lucky!  Hopefully, we can get Tucker back on track and home in a couple of days.  Oh, while I'm in the hospital, I have no internet access.  I will continue to blog and put it up once I get home. 

Sunday, January 25th, 2009 ~

     It's 5:31am, and yet again I am awake.  Tucker woke up vomiting on Friday morning, so I called the Pediatrician.  We actually had a scheduled follow-up with him in the 2Q clinic at McMaster for 2pm regarding his RSV and Peribronchitis, but the vomiting was out of the usual so I called.  Thankfully, Dr. MacNay was on call and I didn't have to re-explain Tucker's disease, etc.  We agreed that Tucker, besides the vomiting & diarrhea, seemed to be 'himself' so we stayed at home and waited for his appointment; however, we wouldn't feed him, just start him on Pedialyte.  Well, as time passed, Tucker wasn't Tucker anymore and the vomiting and diarrhea increased, so I called Dr. MacNay back to let him know as I don't think he or the parents of any other children he'd be seeing would appreciate Tucker coming into the clinic.  So, we agreed I would bring him into the ER.  Here we go again.  He is at such a great risk going into the hospital, but we can't control the vomiting, diarrhea or dehydration at home.  Poor Dave, he is still sick - dizzy and headachy, not good for him to be taking care of the girls either.  So, off Tucker and I go.  I honestly thought they'd bolas him and we'd get to go home - NOT!  He was admitted by 2:30pm on Friday afternoon.  The worst of it was the entire ER was sick kids and one adult.  Not just kids with the flu, or with parents who'd brought their child to ER instead of the doctors (which I've seen on so many occasions) These were kids that were sick like Tucker with underlying conditions (Cancer, etc), and they were all waiting for beds.  Needless to say it was a long 26 hours in the ER before we were given a bed on the pediatric ward.  Thankfully while we were in ER, we were lucky enough to have a private room with an actual door and lights we could turn off - yeah!  While we spent 26 hours in the ER, Tucker continued to vomit and have extremely foul smelling bowel movements.  At around 3:30pm, we were brought upstairs in the pediatric unit.  Tucker is in isolation because of the 'gastro issues' and they don't yet know what virus he may or may not have - lots of tests, not many answers.  I keep thinking about Mason only a ward away, wondering how he's doing, how is his Mom & Dad holding up.  But, this is their family time, and Tucker needs me and even if he's sleeping, Tucker is in isolation so I couldn't stop by to give my support ;(  Dave's Mom has been great, coming between the hospital and our house to bring meals, supplies and give me a break.  Last night I was a little more happy to be in a room, with a better bed, and even a 'pull out', thinking that I might be able to get some sleep.  Well, it's now 6:10am, and after changing Tucker's diaper and bed (diaper leaked), I'm still making my entry not sleeping.  But I'll get to that.  Around 10ish, Dave called to let me know that Avery had thrown up - twice.  Poor Dave, that's got to be bad when you're already sick and cleaning up after others.  I feel horrible not able to be there while Avery's sick as this is her first time and all little ones need their Mommy when they're sick.  Dave says she's fine, watching Dora, etc?  So, I attempted some sleep (I had drifted before Dave's call), I shut off the t.v. and lay on the pull out and I am able to finally get some sleep.  Tucker continues to whimper in his sleep and I don't really get into that 'deep' sleep - which I so desperately need right now.  Is it wrong as a parent to actually want to rent a hotel room to just go and sleep?  Has anyone else had that thought?  Tucker's pump goes off yet again, and I actually get up to go to the washroom while she's with him.  I have lost my voice - frickin' lovely!  I'm exhibiting signs of a cold, which I have been for days, but I was hoping it would pass over.  I make a tea and decide to play Sudoku on my phone.  That's when I notice 3 texts from Dave (I had turned my phone off in order to try to get some sleep).  Both Tori & Avery are vomiting, Tori is very upset and Avery is fine - I feel even more terrible for not being there for my girls, but Tucker needs me too.  I am so torn and even though I know Dave is with the girls, it's just not the same.  The nurse mentions, that even if we were going to be discharged on Monday, the doctor would likely keep us here an extra day to avoid Tucker contracting anything that would cause us to be re-admitted, ugh!  As I sit here, looking out the window, I see the Canadian flag flapping in the wind and then I am thankful to be inside on a bitter cold night, and hope that everyone else is home safe and warm!

Thursday, January 22nd, 2009 ~

     Here I sit, yet again, trying to type my thoughts and feelings onto this page.  The last couple of days have been a blur.  Dave has been banished to our bedroom as he has some violent bug and has been bedridden for the past two days.  I won't let him come out to the 'rest' of the house for fear of Tucker or the girls catching it.  So, it's been me and the kids - even the nurse cancelled yesterday, like last week - so much for respite.  At least Esmie has been here for the past two days!  Some of you know about two co-workers of mine, their son Mason (6 months old), isn't doing very well and I'm hoping that everyone who reads this blog will say a prayer for Mason and his Mom & Dad, today.

     Hearing Mason's prognosis resurfaced emotions I have been trying to bury.  It's so not fair that this is happening to Mason & Tucker, and no one can tell me why.  There is no good reason.  Yet, there are actual 'bad' people in the world who live a full life - how does that work?  How does God, expect us to believe in him when he takes away our children?  I still haven't set foot in church since the last day, and after today, it's likely going to take even longer.

     I forgot to mention that on Tuesday, January 20th, a reporter - Jason Buckland, and a photographer - Dave Ritchie from the Toronto Sun came to interview us and take pictures of Tucker.  The article is in today's issue of the Toronto Sun, on page 9:  A smiling tot, a deadly disease.  If you read the article online, you can actually view the picture and video taken by clicking the 'video' tab.  It was suppose to promote more of the February fundraiser but spacing constraints didn't allow for much advertising of the event;(  Oh well.  Maybe next time.

Monday, January 19th, 2009 ~

     My Mom came down for a visit this weekend which was nice.  I actually left the twins with Dave for their nap, and Tori, Grandma and I hit the mall.  We had no intentions of shopping, just walking around to get out.  Tori had something else in mind.  I can't believe how many new toys she got for Christmas and she's still asking for more?  So, I told her that she received so many beautiful gifts for Christmas, some of which she hasn't even played with yet, and her birthday is going to have her birthday next month, so she'll just have to wait.  Surprisingly, she took it very well!  It was nice to get out, without running from appointment to appointment, etc.  I been receiving emails for tickets for the fundraiser, which has been great as I had so many verbal confirmations without ticket purchases that I was getting nervous.  I can't wait for the event, I think it's going to be a huge success!  A friend of ours is going to issue a media release in Brampton, Mississauga and Toronto, so hopefully it will bring more interest.

Thursday, January 15th, 2009 ~

     I received a phone call today from Tucker's pediatrician, Dr. MacNay.  Apparently the nasal swab performed on Monday night at St. Joseph's ER, came back positive for RSV.  Respiratory Syncytial Virus is a major cause of respiratory illness in young children.   RSV causes infection of the lungs and breathing passages.  But RSV infections can lead to other more serious illnesses in premature babies and kids with diseases that affect the lungs, heart, or immune system.  Which means that Tucker is at a greater risk and I'm concerned about this... but Tucker has been a brave little trooper!  I am sure that he'll fight this virus.  He's been doing so well since we figured this is probably what he's had since the beginning of December.  WE just have to wait it out and hope that he wins this battle!  I'll be so happy when this winter season is over!  Like his disease, there is no treatment or remedy for RSV because it is a virus (unless he contracts pneumonia or something else in which case in will likely result in another hospital admission, so let's hope that doesn't happen).  Tucker continues to be very clinging to me, and at night, I do love putting him to bed as it is our quiet time together; however, during the day, it makes it difficult to get things accomplished.  I know everyone tells me to leave the cleaning, laundry, etc., but everyone needs clean underwear, lol. 

Tuesday, January 13, 2009 ~

     My concerns have been right, Tucker's  dietician - Phyllis came by for his bi-weekly check-up today;  Tucker is losing weight again, plus, he isn't eating for pleasure either.  So, now the trick is to find the right amount of Pediasure that he'll be able to keep down, and successfully gain weight?  Tucker is increasingly clingy to me, which I'm happy that I can comfort him, but I just wish I knew what was the cause for all of the clinginess?  The nurses have been coming for nearly two months and Tucker hasn't been able to build a rapport with them.  If I am in the house, he wants nothing to do with them.  I realize it might be better if I left the house to allow the nurses a chance, but due to Tucker's behaviour when they are here I'm reluctant to do that.  Which results in compounded stress.  What a vicious circle!

     On a totally separate issue, I have been getting a lot of emails with regards to the upcoming Tucker's Time Valentine's Dinner & Dance.  I want to assure everyone, that we are planning a romantic evening.  There will be door prizes, a silent auction & live auction (only 3 items on the live auction) along with a fabulous meal and fantastic music - all combined make for a lovely evening.  So, invite family, friends, friends of friends...  the more the merrier!  The way we figure it, is the more people who attend that don't know us, the better - the word will spread to others who have not yet heard about Leigh's Syndrome.  We look forward to seeing everyone there!

Monday, January 12, 2009 ~

     I was right, another sleepless night!  I called the pediatrician and we went into see him at the hospital.  Dr. MacNay ordered a chest x-ray and was able to see on the test that Tucker has Peribronchitis.  He also did a nasal swab to see if Tucker has a virus or if it is a result of him aspirating his feeds, or if it's just part of the disease?  We should have the nasal swab results in 24 hours, Tucker will see Dr. MacNay next week to see if there is any improvement?  So, keep your fingers crossed that it's a virus that Tucker can fight off.  I need to go out and shovel the driveway and clear my head.

Sunday, January 11, 2009 ~

     Last night I called 911 for the first time, regarding Tucker.  It is much different when you call for your own child.  Tucker has been coughing, and we're trying to determine if it is a result of the disease, or if he has an infection, or whatever?  When he was coughing this time, it sounded like he was choking, Tucker finally brought up a lot of phlegm and bile, but nothing else... he then continued as before and we thought he may be aspirating on some of what he'd brought up.  This had been going for about 5-7 minutes, and we decided it was time for 911 as we don't have the ability to suction him at home.  Within minutes the fire department and ambulance had arrived and Tucker had thrown up more bile and phlegm, that we saved in a container to show the medics.  His heart rate was high and the medics thought we should bring him in, so Tucker had his first ambulance ride.  I am happy to say, he did very well!  However, we were not so lucky at the hospital.  Apparently just before we arrived, 7 babies were brought into ER and 3 were in resus.  So, we waited.  He continued to cough, but lungs sound clear?  I don't understand how that can be, but the longer we waited the better Tucker seemed to be.  Once the ER doctor came in, Tucker was back to himself, heart rate under control and more than willing to 'go' home.  So, Dave the doctor and I agreed we'd take him home as other than waiting to get a chest x-ray and then waiting for the results, probably wouldn't change the course of action as he is still on puffers.  We returned home, and put all the kids to bed at 9:30pm.  Tucker had a very rough night, and we ended up taking him off his feeding pump for fear of him aspirating.  Dave and I brought him downstairs to watch t.v. to keep him upright; of course Tucker wanted me, so i held him on the couch, he was out in less than 10 minutes, and I told Dave to get some sleep (I knew I wouldn't be able to sleep).  I watched some t.v. and around 7am, he woke up as I moved to try and get more comfortable.  So, I brought him upstairs with me and we laid down (Tucker in my arms).  Dave got up with the girls and than I got up around 9:15am.  Today was very much a pyjama day, I was able to take a nap having only had a maximum of 2 hours sleep.  I wonder what tonight holds for me?

Thursday, January 8, 2009 ~

     I can't get used to writing /typing 2009, I had to write a cheque and I still wrote 2008?  Is everyone else still doing that?  Tucker had his swallow today, and although he didn't aspirate during the test (which Dave and I am positive he does on occasion) the test showed that he holds his food in his throat for an excessive amount of time.  The occupational therapist believes that Tucker is doing this as a defensive mechanism to not aspirate?  They OT's and the doctor's believe they now have a good baseline in case we ever have to do the test again.  I hope not... that barium stuff we had to 'dip' his food in looked awful - poor little guy.  We also stopped in to introduce ourselves to Mason and his Mom & Dad, Alyssa & Mike to wish Mason a speedy recovery. Pictures don't do Mason justice.  He is so adorable and happy, smiling from ear to ear!  We're keeping our fingers crossed that he'll be going home soon - he looks too well to be cooped up in the hospital.  Oh I have forgotten to add our good news.  Everyone knows that Tucker's Valentine's Dinner & Dance Fundraiser is fast approaching and I hadn't really tried to 'sell' the tickets thus far as it was Christmas and I didn't want bother families during the holiday season.  But the gloves are off!!  I want everyone to know that this event isn't just for people who are friends of ours or know Tucker... it's for everybody who wants to come out with family & friends, have a wonderful night with great food & music while supporting a worthy cause.  Drum roll please... I contacted people on the family support list we were given when Tucker was diagnosed and one of the parents contacted me.  She works for a company called, "Silent Partner Auctions."  She has offered her company to come out to the event and run a Silent and LIVE auction!!  It should be entertaining.  What a wonderful night this can be with the door prizes, auction, etc.  So do your part and spread the word about this Charity Event.  Not to mention, it could be an 'early' Valentine's gift for you and that special someone ;)

Wednesday, January 7, 2009 ~

     I am so exhausted, yet unable to sleep?  Can someone tell me how that works?  Both Avery and Tori have ear infections, Tucker continues to vomit and of course - Dave is working nights!  I literally have been walking from one bedroom to settle one of them down, then to the other, then to the third; bring one in to bed with me (hoping not to wake the other two), then just when I think I may be able to lie down and get some sleep - the cycle starts again, aghhhhh!  At least this is the last of Dave's nightshifts.  Tucker had his regular check-up with his pediatrician today, and although he's holding at 11kg, he is vomiting daily again, which concerns me.  So, we are going to re-introduce one of his old reflux meds hoping that the two combined can settle the reflux a bit (if it is reflux?)  He is still extremely clinging to me, which i do love, but a little freedom would be nice.  We continue to take it a day at a time.  On Saturday, I actually slipped out to a movie with a friend (I can't remember when I saw my last movie), we went to see Marley & Me.  Good movie as long as you haven't had to put your dog down recently - unfortunately, I put Nikita down three months ago and I bawled through the movie.  Bring Kleenex.  Other than that, not much else going on in the house.  The kids are still loving their 'new' Christmas toys and I haven't seen them playing with their old toys, sometimes the girls fight because they both want to play with the same toy so that's a good sign... it also teaches them to share.  Tucker doesn't get into the fight so much as he just wants to be with Mommy.  I have also created another 'Animoto' video for the month of December, which includes Christmas morning!  Click here to enjoy Christmas 2008 with the Patterson's.

Tuesday, January 6th, 2009 ~

     I know I have mentioned that I have heard from people around the world, some of them parents or family members of children with Mito Diseases and others just sending us thoughts and prayers.  Well, today I received an email from a Dad I've been in contact with a couple of times.  Unfortunately, it wasn't only to wish us a Happy New Year... he was emailing me to let me know that their 16month old son - Evan had passed away on December 18th, 2008.  My heart sank when I read his email.  I felt so many things, pain for the suffering that he and his wife are going through, yet thankful that we still have time with Tucker (which immediately changed to guilt that I could think such a thing.)  I would like everyone to say a prayer over to the UK, for Dad - Bryan and Mom - Anne, during this difficult time when their little Evan earned his Angel wings.

Thursday, January 1st, 2009 ~

     WOW!  2009!  I'm so happy to be here, at home with Dave, Tori, Avery and Tucker.  I hope we will all be here to ring in 2010.  I know it's selfish, but I'm trying to be optimistic.  I have received emails from other parents or family members of children in similar conditions as Tucker, some a little better and some a lot worse, and I thank God for each and every day I get with Tucker, Dave and the girls - I am not ready to lose any of them, I guess no one is every ready to lose a child and part of me is 'thankful' (if that's even the right word) to have a warning, knowing that at any moment one of my children could be taken from me.  So, another one of my resolutions is that I'll make each minute count and cherish every moment - no matter how cliché that sounds, I hope every person that reads this blog adds it to their resolutions.  "HAPPY NEW YEAR!"

Tuesday, December 30th, 2008 ~

     Well, Tucker gained weight, not much but he increased from 11.02kg to 11.04kgs, yeah!  At least he didn't lose.  He is still very irritable and clinging to me but how could I blame him?   He hasn't seemed to bond with the nurses yet, and I don't know if it's because I'm generally still in the house?  I'm just not ready to go out and leave him alone with either of the nurses.  Today, Dave and I met up with some family I hadn't seen in a very long time and it was wonderful!  We spoke of trying to keep in better contact in the future, and I hope that is possible - especially now with the kids, etc.  With everything going on with Tucker, I've learned that life is way to short and we should all appreciate what we have and cherish those around us.

Monday, December 29th, 2008 ~

     Hello everybody!  Sorry it's been so long, but our computer crashed and although we finally got it back, I don't think it's functioning optimally.  We spent Christmas Christmas Eve with Dave's family - followed by a party at my cousins, Christmas Day was just Dave and I with the kids and it was absolutely beautiful.  Tucker, Avery and Tori were in awe!  We decided not to put any of the presents under the tree until they were sound asleep on the 24th (the kids would have tore open the presents at first chance).  So, when they woke up the Christmas Stockings and under the tree were filled to the brim - thanks to my co-workers at PRP!!  The smiles on their face were filled with wonder and joy - it was fantastic. I've created another video for the month of December and Christmas, you can view it by clicking here. Yes I know, I have to still add the video from Florida, I'll get to it soon, I hope!  As for Tucker, he still continues to spit up after meds, feeds and sometimes during the night.  His cough is back, and we've re-introduced the puffers and antibiotics.  Tucker has an appointment with Dr. MacNay next week, so we will see what he thinks.  We're looking forward to spending New Year's Eve with friends, going tobogganing and then having dinner and just hanging at home.  Hopefully it will snow again, otherwise the plans will change.  I have to apologize with my previous blog entry, this blog is supposed to be dedicated to Tucker, sharing how he is doing and how I am coping.  It was not my intent to air my laundry.   I'd just been bottling up things for so long that I thought if I wrote it down it would help, and it did - but this is not the right spot for it and I will try not to add entries like this in the future.

Tuesday, December 16th, 2008 ~

     Talk about emotions!  I've had to keep something in for a long time, that finally came out yesterday.  My parents separated a couple of years ago, but it was a long process.  As with most, it wasn't the most amicable.  Well, this past Thanksgiving, my Dad told us he had Cancer and would be starting treatment in November.  Because of the separation, my Mom was not privy to this information.  Which put me in a tough spot as I know how my mother thinks/feels, but I have to respect my father.  So, I carried on as though I was upset with Tucker, meanwhile I am just angry with it all, Nikita (my 16 year old dog that died before we went to Florida), Tucker's Leigh's Disease and now my Dad.  In my mind 2008 couldn't get any worse, but 2009 may not be any better.  A couple of weeks ago, my Dad was admitted to hospital, where he still is right now.  We've been told the Cancer has spread and that Dad contracted a virus.  So, I was driving up to see him during the first week, spreading my time between him and Tucker.  I haven't been in just over a week as I realized I just can't risk catching anything while being at the hospital and putting Tucker at risk.  I call my Dad every day and he seems to be improving - which is wonderful.  I called to speak to my Mom yesterday, as she'd called me while I was sleeping on the weekend and this was my first chance to speak to her.  Out of the blue she asked me, "What do you think of your Dad's Cancer"?  My mind froze, she knew - but how?  I asked her how she found out and she told me that it didn't matter as neither of her daughters had told her?  Okay, I know I didn't tell her, respecting my father's privacy.  In my opinion, she lost entitlement to my fathers health when they separated?  I may be wrong, but I have enough on my plate that I shouldn't have to worry about making sure I tell people that my Dad has Cancer.  My Dad is a private person - I respect that, why can't my Mother?  I know she's going to read my blog and I know how she feels, as it really didn't matter if I'd told her or not, either way someone would have been upset and it's really not my place.  The only reason I'm mentioning this now as I know I have alluded to 'something' and have not been able to share.  Some people have told me how strong I am writing this blog and dealing with things, now you have the whole picture.  What you may not be aware of, is that even with all I been dealing with - I've actually met/spoken to other mothers that are dealing with more - which makes me feel guilty.  Friends call and they're stressed out about moving, getting everything perfect for Christmas, etc., then they remember it's me that they are talking to and say they shouldn't talk to me about stress.  I want people to realize, that everyone has stress, no matter what it is or how minor or major.  I don't want people to compare their stress to mine, there's no comparison chart... everyone handles stress differently.  The only thing I want everyone to remember is 'family' and 'children'.  I have learned that life is short, don't put off reading a book to your child when they ask, or playing a game... don't put off saying, "I love you" or figure that your spouse and children 'know' that you love them.  Does it really matter how many times you tell it to them.  Don't you feel wonderful when someone says it to you?  It is only 3 little words that can make such an impact, how hard can it be to say them? 

     Anyways, enough about that, Phyllis came over today and Tucker continues to lose weight.  Four weeks ago he was 11.18kg, two weeks ago he was 11.14kg and today he was 11.02kg.  I informed Phyllis about Tucker's appointment with Dr. T yesterday and how I believe if we put Tucker on 24 hour feeds, I feel it'll break his spirit for what little freedom he does have.  She agrees and doesn't want all of his calories to come from the Pediasure but wants him to still want to eat for pleasure and gain some of his calories from eating.  So, together we came to a solution - hopefully.  We will cut his feeds in half during the night as Dr. T suggested, but instead of having him hooked up 24hours, we're hoping that we can just syringe Pediasure into the g-tube once/hour.  Will have to run it by Dr. T., and it will be a pain to do it this way, but I rather do this than have him hooked up!

Monday, December 15th, 2008 ~

     What a busy weekend!!  On top of the three events on Saturday, we had Dave's work 'kid Christmas' party during the afternoon.  It apparently started at 11am, but Dave thought it started at 1pm?  He's not completely at fault as he did send me the email.  But I just figured that he could organize one event... I stand corrected, lol (it was good for a laugh though).  There was a fabulous lasagna, craft table to do ornaments, desserts and of course - presents from Santa!  We went home and had a two hour nap, to turn around and go back out for my work's "kid's Christmas" party at the Woodbine Shopping Center Fantasy Fair.  Oh my, it was the first time that I had been there and it was fabulous, very busy, but the kids had a wonderful time.  Thanks to everyone at the P.R.P.A. who organized it - a job extremely well done!  I actually had to wake up the kids this morning as the girls had pre-school and Tucker had an appointment with Dr. T.  The girls really didn't want to go, but they adjusted once they saw their friends.  We arrived in time for our scheduled appointment, but had to wait 45 minutes as Dr. T. had to give a family some devastating news... I being on the receiving end of that back on August 15th, could sympathize with the parents and I didn't mind waiting.  Tucker on the other hand, doesn't understand and became quite irritable.  I wasn't prepared for the news I received as this was just a routine check-up.  I think I mentioned that Tucker went to the hospital for chest x-rays last week and was prescribed puffers and antibiotics for the gunk in his lungs and his g-tube is also infected.  Anyways, Dr. T. thinks that the incessant coughing during the night is a result of too much feed, which causes Tucker to regurgitate and aggravate his lungs.  I had purchased a foam wedge for his bed and with the puffers his cough is subsiding.  However, coughing is also a symptom of Leigh's Disease.  So, Dr. T. wants us to cut the amount of feed we have him on for 10-12 hours throughout the night in half, and have it run over 24 hours.  I know I want to do the best I can for Tucker, but I don't want to break his spirit.  I think if he was constantly connected to his pump it would break his little heart.  It's very upsetting.  Dr. T. also noticed that in addition to the 'posturing' of his left hand (since he was hospitalized) Tucker's, toes are also 'posturing' which an indication that cells are being affected in his brain and this is not reversible.  Dr. T. mentioned that we know the disease is a progressive degenerative neurological disease, we just don't know when or how Tucker will be affected.  But it's becoming more obvious.  So, I cry and try to think of a way to keep Tucker off 24 hour feeds, which in my frame of mind proved to be quite difficult.  Then while putting Tucker to bed, Nanny Esmie suggested why can't we just syringe him throughout the day?  It sounds good to me, I will run it by the Dietician tomorrow.  Keep your fingers crossed.

Saturday, December 13th, 2008 ~

     We have a very busy weekend ahead of us.  This morning, at 10am, we attended our 'first' Christmas Concert with the girls and their preschool.  It was beautiful, and they sang really loud.  It was a proud morning for me.  I can't wait for the next one!  Then we took them to McDonald's for lunch and they loved playing in the playground.  We brought them all home for a well needed nap (I actually took one as Tucker was up again all night).  Then we got up and ready to go to Westfield Heritage Center in Rockton.  It's an 18th Century village putting on " 'twas the night before Christmas".  I guess they do it for three Saturdays in December.  They displayed an upside down Christmas tree, Fireworks, etc.  We even went into the train station where the kids wrote letters to Santa (Father Christmas in the 18th Century) and then the letters were telegraphed to Santa.  After a brief minute or two, the kids received a telegraph back from Santa... it was really cool.  The mini village is set up as it would have been back in the day, it had an inn, a church, a hardware store, a boot and harness store, a quilt making store, there was even a horse drawn wagon ride, etc.  It was the perfect weather for being outside and it was a nice family outing for a couple of hours.  We drove the kids home and prepared them for bed, and then we attended a friend's Christmas party.  It was very nice, they had a catered event with a d.j. and a hypnotist.  Dave volunteered of course, and was the only one hypnotized.  Watch for the video on you tube.  It was hilarious!  Quite the ice breaker really.  We didn't stay long as I was exhausted and knew that Tucker would be waking all night.  So we headed home and were snug in our beds by 12:30am - it was nice to go out together, our first 'date' in a long time!

Wednesday, December 10th, 2008 ~

     Dave and I brought Tori to her speech therapist appointment this morning.  She has been improving, but there are still some concerns.  We've decided with everything going on that we'd hold off putting her into the speech class until the spring - partly hoping she may continue to improve and partly that we are just so busy right now.  Tucker fell off his little 'Diego Car' twice today (thankfully he didn't get hurt, just scared).  He continues to loose his balance and barely has the strength to lift his upper body to crawl.  So, he is generally in one place, sitting or calling for me to pick him up as he really wants to be held 24/7.  Even sleeping he wants to be nose to nose with me, and I love the closeness, but I'm unable to sleep like that for any extended time.  We see Dr. T. next week so hopefully will be able to get some options to comfort him better.  I also discussed the McKee with Dr. MacNay and he is referring us to the doctor who will do that.  Initially we were told it's done at McMaster under anesthetic and we were reluctant to put him under, and Dr. MacNay informed me it's done in the doctor's office - no problem.  From everything I've heard, that will be a much better option - no leaks, more comfortable for him without a tube going down his pant leg, etc.  Tonight, I went to a BAMOM (Bay Area Mothers of Multiples) social.  I had joined when I first found out that I was expecting twins, and it's a monthly meeting with guest lecturers and other mothers/parents of multiples that give you ideas to make life easier with two or more babies.  That's where I met Tara, so we went together.  I haven't been in so long - over a year, but it was nice to get out for a couple of hours.  Don't get me wrong, I still feel guilty, and continue wonder if everything is okay at home while I'm gone... but it was needed to go out and interact with other 'moms'.  Most of them were aware of Tucker's illness, but it wasn't the focus - which was nice.  It is so awkward when you run into someone you haven't seen in a while and they ask, "So, how's everything, the family, etc?"  I really don't want to go into it as it is not a small conversation, but I've made a promise to Tucker to get the word out, but then the person who asked feels so sorry for us, they cry, I cry... it's very awkward.  But I am not a person that can lie and say, "Everything's fine" especially when it's not.  Well, tomorrow the second nurse is due to arrive at 11:30am - let's see if she finds the house today?  She hasn't in the last two weeks?  If that had been me, after I couldn't find it the first time, knowing that I had a week before I had to re-attend, I would have found it so I would know where I was going.  But that's me.

Tuesday, December 9th, 2008 ~

     Well, Tucker had an extremely difficult night with all the coughing, again the forceful cough resulted in him vomiting.  So, I called the emergency number for McMaster and spoke to the pediatrician.  Without seeing Tucker it's hard to diagnose, and a couple of suggestions were discussed and we could always bring him in - but I'm extremely paranoid to bring him into hospital as he is at a greater risk of infection in hospital.  So Dave and I opted to keep him at home and get him in to see Dr. MacNay, which we did; however the end result, we ended up in the hospital getting chest x-rays which took 8 hours before we got to leave, so we got home at midnight - poor little man.  He now has a couple of puffers, an antibiotic (which will help what looks to be the beginning of a chest infection); the doctor's are changing his reflux medication, and because he g-tube site was oozing, he was also prescribed a  antibiotic ointment.  So, hopefully things will turn around - it's so hard when you have a child that can't tell you what's wrong and your unable to help them.  The doctor said the meds should show improvement within 4 days... keep your fingers crossed.

Saturday, December 6th, 2008 ~

     This week has been a blur!  The kids seem to be doing well although the sniffles have not left this house, at least they haven't worsened?  When we go out, the kids are getting more excited for Christmas as each day it seems that another house has put up their decorations.  Flyers coming with all the "Christmas Sales" with Santa on them are getting Avery all riled up.  Tucker is clinging to me and if I'm in the house he refuses to go to Dave or the Nanny - which is difficult since I'm here 98% of the time.  On one hand it's flattering and I love all the cuddles he shares with me and that at least I know I am able to console him, but it also means not much gets done?  He still is waking up frequently throughout the night which also proves to be very tiring.  We have not yet tried the nanny working overnight as one of the nurses has had troubles getting to our house on two separate occasions?  Hopefully it will straighten out this week!  Today, my old roommate, Julie and her son came down for a visit - it was great to see her and catch up; not to mention Tori and her son, Chase, get along wonderfully - with Avery 'tagging' along of course!  Poor Tucker - he just couldn't keep up ;(

Wednesday, December 3rd, 2008 ~

     Today I was happy to have some "Tori Time".  I decided to take her to her first movie at the theatre.  We went to see Bolt - I was a little apprehensive with Nikita only being gone a short time, but Tori seemed to enjoy it (it was in 3D, too), at least until about the last 10 minutes, where ... I better not go into detail for those who haven't seen it.  From an adults perspective - it was pretty good and she was well behaved for a 'new' experience.  Next alone time will be "Avery Time", but what do I do with her - my rebellious daredevil?  Any suggestions would be welcomed.  She will not sit through a movie - unless of course I let her run rampant and climb all over the seats, up and down the stairs, etc.

Monday, December 1st, 2008 ~

     Well, the second nurse was one half hour early - but she found the house!!  Tucker seemed to take to her just fine, as long as I fed him, etc.  He would not take his nap with her - which I'm kind of glad didn't happen on the first day.  But he had no problem with her being there when he woke up.  She brought him downstairs and she had him laughing from his belly - what a beautiful sound.  Hearing any of my children laugh is a beautiful sound.  I picked up the girls and even Tori didn't make shy with the nurse - which was odd.  Either the girls are getting used to all of the 'new' people coming in and out of the house for Tucker, or she has the 'kiddie vibe?'  Either way, it makes me happy as children sense adults that are not child friendly.  The night was not so great and I'll have to elaborate on that at some point but I'm not at liberty to go into detail at this point.  24 more sleeps 'til Christmas!! 

Saturday, November 29th, 2009 ~

     One of the nurses was supposed to start today... I say 'supposed' to as she didn't actually make it to our house?  She lives up on the mountain and I guess she doesn't normally take the highway?  The first time that she called to say she was lost, she was in Burlington.  I got her turned around and she should have been at our house within 10 minutes.  I called her, and she was lost again?  She did make it to Waterdown, but she went the wrong way and was on the other side of town?  I told her to turn around and provided simple directions which should have had her at our house in less than 5 minutes.  After one half hour I called her again (I waited as she was early and I thought she might have stopped at Tim's or to pick up lunch?)  Nope, she was in Oakville?  At that point, I thought it would be best just to have her start fresh the following week as she was already flustered being lost and late, and I wasn't much better... it is funny, but she's a nurse?  I hope that doesn't indicate her nursing skills?  Oh well, start with a clean slate next week.  We'll see how the other nurse is on Monday?

Thursday, November 27th, 2008 ~

     Most of you know that we had some Christmas 'Family' photo's taken at Sears - that turned out wonderfully.  We were colour coordinated, everyone was happy and we all looked the right way at the right time.  Today we picked up the photo's - they're stunning if I do say so myself.  The one thing that many of you don't know, is that while looking around for a custom photographer that will take the time with the family to get the 'perfect' shot, I found someone who actually works with families with terminally ill children.  When I had initially booked her, I didn't know this information, but she generally takes photos of the parents and the child, I booked her to take photos of the kids 'naturally' not posed.  Well, this morning I woke up and decided that I wanted photo's of Dave, Tucker and I.  It may seem selfish, and I've always tried to do for one, do for them all, but I think this is different.  The girls will have photo's individually done with us, as time goes on, birthday's, graduations, weddings, etc... We won't have that with Tucker, and I'd much rather have photo's while he's at his best.  I can't wait to see the final pictures - I hope they turn out as well as the Christmas Family Photos.

Tuesday, November 25th, 2008 ~

     The nights continue to be tough, the Melatonin doesn't seem to be working?  It may help him dose off, but it doesn't keep him a sleep for any length of time.  Then he'll kind of drift off with one eye open and forget about trying to 'sneak' out as it totally wakes him; otherwise he is up for 1-2 hour intervals.  Now that I created this site, as you know many people have emailed us from all over the world:  Europe, the U.S, Canada, etc.  Some of which have been parents of children with Leigh's or Leigh-Like Disease.  Some of these parents have lost their children and others are still cramming a lifetime of memories into whatever time they have left.  The one thing I have learned through all of this, although we were fortunate enough to get a diagnosis, where others do not, all children with Leigh's have similar but varying symptoms, and the doctors can't tell us anything.  That I find very hard.  Oh, we also heard back from Tucker's case worker - Bernie, after speaking with Phyllis (Tucker's Dietician/Nutritionist), they suggest that since Tucker isn't taking any liquid orally and barely any food, they think it's best that we start the shift nursing so that they are already trained to administer feeds and meds via his g-tube.  Secondly, they'd be more familiar with him and hopefully develop a relationship with him so when the time comes and the hours need to be increased Tucker wouldn't have to deal with meeting more 'new people'.  A part of me is thankful for the extra help and hopefully sleep, but part of me is frantic about what this may mean for Tucker?

Monday, November 24th, 2008 ~

     The day started off with us having two appointments for Tucker, one was getting his AFO's adjusted (foot orthotics) and then Tucker had his regular appointment with his Occupational and Physio Therapist's today - Betty & Lowana, and they had some concerns with the 'posturing' of Tucker's left hand, which we have come to believe is just "Tucker".  They are also concerned about his vomiting and agree with me that his dosage may need to change, so it is in ratio with his increased weight?  I'll definitely email Dr. MacNay and see.  Other than Tuckers incessant coughing, he seems to be happy, that is as long as I'm holding him.  Before, Tucker at least used to trade off with Dave and I and seemed to favour me during the day and Dave at night.  Well, for the last couple of weeks, it doesn't matter if it's day or night - it's me.  Dave is able to settle Tucker, but it takes a while for him to calm down if I am around.  I actually had to leave and go get groceries because it took everything in me not to go into his bedroom and take him from Dave to get him to calm down.  That really pulls at my heart, on one hand it's fantastic that he wants me and I love cuddling him, but 24/7 is a little excessive and very difficult to get things done or even spend time with Tori and Avery.

Saturday, November 22nd, 2008 ~

     We drove to Dave's work today to attend the 'Kids Christmas Party', which was chaos.  So many children, families, cake, cookies and of course - Santa himself.  It was a lot of fun, but Tucker wasn't into Santa which put a damper on the rest of the time since we saw Santa first.  Hopefully the pictures will turn out okay?  We drove home and Grandma came down for a visit.  It was good for the kids to see her - they adore her.  Grandma gave the family an early Christmas gift - a theatre style popcorn maker, and we made popcorn and watched a movie... the kids were having a blast watching the popcorn pop.  I can see popcorn parties erupting in the future. 

Friday, November 21st, 2008 ~

     Avery had her appointment at CDRP today.  Yes, she's been going as long as Tucker has, as she does have some areas of concern as well, but Tucker's became more dire this summer and things needed to get started for Tucker due to the limited time we have to make it easier for him and us.  I hope nobody feels like we're being bad parents, the only way I can explain it is to think of it as "Triage".  You take care of the most emergent cases first.  Avery's O.T. agrees that she has some Autistic tendencies, but if she is diagnosed, Avery would be a 'high' functioning child.  Again, I hope the doctors and the team is wrong, but we will continue to do whatever we can to get her the help she needs and deserves.  So, again another set back when you think things are just driving along.  But I don't have the energy to think of the long term meaning.  I'm not in denial, but I do hope everyone is wrong, but right now, my energy needs to be focused on Tucker.  I guess that really does sound like a bad parent, but I can't find the words to explain it any better.  At Avery's last O.T. appointment, Dave answered a questionnaire with the O.T. regarding her sensory stimulus? Today, I did the same one as Dave figured that I spend more time with the kids that it may vary.  A couple of questions did, but for the most part I think they were pretty much the same.  I guess will find out the results at the next appointment.  We then took Avery for her very first haircut.  WOW!  We took her to Sharkey's Cuts for Kids in Burlington and she loved it!  She didn't freak out, stayed seated and allowed Giselle to cut her hair and it turned about beautifully!  Finally, I found someone who can cut 'curly' hair.  I wonder if she'll cut mine?  I'm serious, I don't think I've ever gotten that good of a haircut.  Dave & I then took Avery out for lunch, I really think this was the first time we've had Avery by ourselves together - it was really nice.  Tori stayed with Tucker and Esmie and went to the YMCA today and had a blast.  Tori is doing really well and looks forward to seeing her friends at preschool and wakes up asking, "Is today a school day?"  I'm so glad she's happy going, as is Avery!

     On a different note, as you are aware, I've been updating by blog regularly, but they haven't been getting posted.  Unfortunately, my cousin is very busy with his business and is unable to make a few additions that I would like to have on the site because he is not a 'web designer'.  I think what he has helped me do so far has been wonderful and I want to thank him for all of his time, effort and patience.  We agree it's probably better than I hire an actually web design company to 'host' the site and make the changes/additions that I want.  SO, thanks so much Scott - the website is fantastic and reached the masses!!  With that being said, I've hired "Float Point Media" to take over.  They generally don't do small accounts (like this), but I came recommended, so thanks Devon for taking my site.

Thursday, November 20th, 2008 ~

     Tucker had his routine visit with Phyllis today, I have to admit, with him vomiting, I truly believed that he'd lost weight - not a lot, but I didn't expect him to gain.  To my surprise, my brave little boy weighed in at 11.18kgs - FANTASTIC.  I'll take the gains any day!  We discussed his feeds or lack thereof and Phyllis provided some alternative suggestions to get Tucker to continue to eat orally as opposed to getting all of his calories via G-tube.  She also said, that although there is the growth chart, Tucker isn't a typical 28 month old, as he isn't able to burn all the calories he puts in.  I guess that makes sense?  I also spoke to Dr. MacNay and we're going to try moving the times we administer Tucker's meds and see if the vomiting will subside.  It makes me nervous because this time last year, Tucker was admitted to McMaster Children's Hospital for a week.  So keep your fingers crossed that doesn't happen.

Tuesday, November 18th, 2008 ~

     Tonight, I attended a car care clinic at my friends shop, "Ladies Choice Autocare".  I can honestly say that I actually learned some mechanical stuff.  I know you guys here a lot of my good friends Tara & Mike (they are the owner's of Ladies Choice), but that's what they are.  They have fraternal girl/boy twins like us, only a month older than Tucker and Avery.  That is how we met actually - through the Bay Area Mothers of Multiples (BAMOM) group at a meeting.  Well, tonight's car care clinic "Motors & Manicures" was about winter car safety.  I have been invited to previous but never had the opportunity to attend, I was drawn in to this one by the advertising of "Chocolate & Manicures" - two things women love!!  A Saxton representative was there with a chocolate display and taste testing (the best part)!  You should see the front of the 'shop', it is completely filled with chocolate gift ideas for Christmas.  Like I've said, there shop is like no other mechanical shop I've been to.  The business is clean and doesn't have that 'oil, tire, yucky smell'.  I know they've had their business for years, but we've only started bringing our vehicle in over the past year.  We will not go any where else.  It doesn't make sense.  I don't want to throw my money away on parts/labour I don't need and you won't if you take your vehicle there.  Besides, I can get a manicure or pedicure or both if I have the time while I wait.  It's a win, win situation!  I know, I am rambling on like a walking billboard, but I believe compliments should be given where deserved.  So many people don't think twice to complain, but go without saying compliments - I believe word of mouth is the best compliment here is mine.  Thanks Tara, I learned a lot, and enjoyed the evening!  I can't wait to attend the next clinic.

Monday, November 17th, 2008 ~

     Thankfully, our week isn't too bad for appointments.  The girls were in preschool today and again on Thursday.  Tucker seems to be doing okay, but his vomiting is concerning me.  He's been on the new reflux meds since March - after the clinical trial; he's maybe vomited two times top since then.  Since we've returned from Florida, he's vomited 5 times and counting?  I'll be contacting the pediatrician this week to see what we can do?  I know people continue to ask what they can do?  I have a couple of prayer requests:  Pray that Tucker makes it through this winter season and doesn't get sick, or if he does - he has the strength to fight and conquer it!  Pray that Tucker is able to remain as strong as he is currently.  Pray that he remains comfortable, happy and full of joy!

Sunday, November 16th, 2008 ~

     Today, Dave is sick?  We decide to have a pyjama day with the kids and I'm finishing my batch cooking, yippee - I can get the kitchen back to normal.  The kids are playing nicely together and the day goes by without any major bumps - I just wish I could've taken a nap, no rest for the wicked.  Laundry, cooking and cleaning were a must.  I called some friends to catch up - something I haven't done in months!  It's always nice to do.  I watched some made for t.v. movie and went to bed.  Of course, Tucker is having a rough night.  I relieve Dave as he's going to work tomorrow and Tucker ends up having another coughing fit.  These 'fits' don't seem to end and last for a half hour or so, and just when you think it's over, it starts up again.  I even syringe a little bit of water into his mouth, hoping it will settle the tickle - no such luck.  Poor little guy, he can't even tell us what's going on.  Dave comes in to Tucker's room and invites Tucker and I to sleep in Dave & my bed.  Yes, we do sleep together when we get some time that Tucker is sleeping well in his own bed.  But when he gets like this, we might as well bring him into our bed for comfort.  Either way, we both are up as Tucker's room is right beside ours; but bringing him to bed with us is physically less exhausting having to get up and walk to his room, lay with him numerous times throughout the nights.

Saturday, November 15th, 2008 ~

     I woke up to rain, aghh!  I would have liked to cover my head and go back to sleep - but the kids wouldn't allow it.  Besides, we were getting our family portraits taken today.  So, everybody up, dressed (thankfully baths were last night), fed, etc.  Just as I was finishing Tori's hair, the phone rang.  Apparently the studio window was open and rain got in and all of the power is out.  We have two options:  wait for the electrician to come and fix it - who knows how long that will be?  Or we could go to Lime Ridge Mall.  We opted to go to Lime Ridge Mall location as the kids were dressed and prepped for the picture taking event.  We arrived, but the photographer wasn't quite set up, we waited about 10-15 minutes and it was agreed that we'd go for a walk and come back in 15 minutes.  That wouldn't work for my kids, they were getting restless.  I suggested trying Sears Portrait Studio, Dave was reluctant because of the kids getting restless, it's Saturday and it's Christmas season.  We went anyways and luckily they took us immediately.  I am completely surprised and elated that the photos turned out beautifully!  We were all looking at the right time, smiling, etc.  Dave and I couldn't believe it.  Avery had enough and we weren't able to get individuals of the children, but we got two family poses and a couple of the kids together.  The pictures were so spectacular it made deciding which ones to purchase very difficult - in the end, I spent way more than I had planned, but they are beautiful.  I have a smile today, it was a good day - except for Avery's meltdown.  Avery started to get pale and fell asleep in the van - it was only 11am?  By the time we got home, I checked her temp (normal), gave her some Tylenol and the option of having lunch or sleeping, she chose sleeping?  Totally confused as Avery doesn't turn down food?  She slept until 4pm, again not normal, but she woke up to her 'normal' self?  Hmm?  Just hope she's not coming down with anything.

Thursday, November 13th, 2008 ~

     We had an appointment with the Developmental Pediatrician for both Avery & Tucker (their 6 month follow-up).  It was good for Avery, because back in February the doctor was thinking she had a spectrum disorder of Autism.  Since then, Avery has made leaps and bounds - a complete 180 as far as I am concerned.  Not that I'm not concerned with Avery's well-being and I'm not in denial, but like the doctor said, "It's too early to make that kind of diagnosis."  With this visit, Avery 'wowed' her.  Not that she doesn't have some of the same concerns, but they are less likely and we should know more by the next visit.  As for Tucker, now that we have his diagnosis, he really doesn't need to be followed by a Developmental Pediatrician, we did discuss his diagnosis and how Tucker is doing, got some measurements, but that was it.  Both of the kids were great considering it was during their nap time and lasted over two hours!

Wednesday, November 12th, 2008 ~

     Happy Birthday to me!  Not a good start when hubby forgets to say, "Happy Birthday" to you.  I know we have a lot going on and he was on nights, oh well - at least he realized his mistake before I pointed it out.  This morning, we had an appointment with Tucker's case manager.  We are trying to see what options we have to try and get more sleep.  We were looking at shift nursing, but I don't think Tucker will be able to be comforted by a stranger in the night.  So, we are going to try a Personal Service Worker, for two days/week and we will have Esmie work the previous night so we can hopefully get at least one to two nights of sleep per week along with whatever 'naps' we can.  It will be worth a shot!  Dave and I went with the kids to Red Lobster for lunch.  It was nice to get out of the house with the kids.  We came home the twins went for a nap and Tori and I fell asleep on the couch.  (I must really be tired as it is hard for me to sleep during the day.)  Dave had to go in for his last night shift of this rotation and again the girls would not settle - there must be a full moon!  At least they didn't keep waking Tucker.  Tucker woke up twice and by 11:30pm, I just brought him into bed with me.  G'night all!

Tuesday, November 11th, 2008 ~ 

     Last night was awful.  Dave is working nights, Tucker and the girls just would not settle down to sleep - it turned into a very long day.  I hope tomorrow is better.  It's my birthday and I can't wait to go for lunch with Dave and the kids.  I need some sleep, maybe it will get me out of this funk I'm in.

Friday, November 7th, 2008 ~

     The house smells amazing, but the kitchen has been turned upside down.  Now I have to clean it, yuck!  It didn't take as long as I thought it would to clean up the kitchen and I have a lot of good food to show for the mess - I can't wait to enjoy it!  I am still feeling sad about yesterday and can't seem to shake this feeling.  Dave wants me to try and not be so negative, or at least not to share these 'negative' feelings with him.  He says he feels them to and it doesn't help when I'm being so negative.  I completely understand that we're going through the same thing, I just happen to wear my emotions on my sleeve.

Thursday, November 6th, 2008 ~

     I decided to do some batch cooking for the winter season:  stew, chili, shepherd's pie, lasagna, etc.  I am able to freeze it and take meals out as we need them based on time or if we just feel like having some 'comfort food'.  I had the crock pot going with the stew, and started the chili in the stock pot on the stove when I realized that I didn't have enough room in the pot for the contents.  So, I decided to run out to Home Hardware to invest in a larger stock pot.  I found one immediately and went to the checkout to pay, and then I saw a dad and his kids come into the store.  My heart sank and my eyes started to swell with tears; it was a father with two daughters and a son.  Just like Dave and I.  But I'll never get to share the joy he has bringing all of his children out with him.  I won't get to see Tucker grow that big... seeing families out doesn't usually bother me, it's when I see the same configuration we have:  two daughters and a son.  I can't imagine there's going to be a time when we just have two daughters, I know we will never forget Tucker; but once the twins were born and our family was complete you start making plans and having dreams of things you'll do as a family.  Mine have been taken away.  I won't get to what kind of relationship my children would have developed - how close I hoped they'd be only being 16 months apart.  Instead, I will belong to a different type of group - a group of parents that have lost a child, I'm not ready and I don't want to be part of that group.  Don't get me wrong, I love all of my children.  I have two beautiful daughters and a handsome son... I can't even think of him not being here.  I know he'll always be in my heart and will cherish the memories, but it won't be the same.  I don't know if I'm explaining it right, and I don't want to offend anyone who has lost a child, but something upset me when I saw that dad and his children.

Wednesday, November 5th, 2008 ~

     Today, the twins are 28 months!  Every day with Tucker is a gift, yet the older he gets the more aware I become of the time we have together is being shortened.  No one should have to live life this way.  I am trying to be optimistic, hopeful and pray that a treatment or cure will be found in time for Tucker that will give us many more years together.  But it is hard when you have a concrete diagnosis.  I know that so many people lose loved ones unexpectedly and wish that thy had had time with them to say good-bye, put their affairs in order, right wrongs, etc., I don't know which is better and I am glad to have this time - but it is still difficult.  Dave, Tucker and I went into visit my co-workers today to thank them for all of the overwhelming support and fundraising they've been doing - it truly is phenomenal.  Co-workers I don't even know have jumped in to help us out!  We truly are blessed to have the family, friends and co-workers supporting us.  Everyone is doing such a wonderful job of spreading awareness of Leigh's Syndrome, I still get emails from all over the country, from the states and overseas.

Tuesday, November 4th, 2008 ~

     As I get ready this morning, my mind starts wandering... if Tucker may not be able to fight off a respiratory infection - does that mean if we put him in a room, 'a bubble' , were no one come in unless they're healthy, showered, etc... a place that would guarantee Tucker would contract no viruses, would that mean that Tucker would live forever?  What a wonderful thought and then I think of where we could find such a place?  Unfortunately, the dream doesn't last long before reality sinks in and I remember about the muscle degradation.  The MRI revealed that Tucker's brain cells are already under stress and will eventually die, which will affect all of his muscles, nerves, etc.  So regardless if he caught a virus or not, we know that keeping him in a bubble would not stop the inevitable.  A mother can dream can't she?  I have been received some emails from other parents of children with Leigh's Disease - it really is helpful to know that there are other parents going through the same situation, dealing with the same emotions and questions - I'm not alone (Dave and I, I mean).  For the most part, the tears don't fall as easily, but some days are better than others.  I feel like I need to do so much with the kids and are always trying to do things that I hope will help Tori & Avery remember him better, but they are only nearly 4 years old and 28 months.  Then there are days where I feel I didn't do enough.  I want to keep consistency and some kind of normalcy in the house - but nothing about this situation is 'normal'.  How many families have a two year old who is literally dying?  So, Dave and I hope to do some weekend getaways providing Tucker is well enough.  We've decided to try to go away about once every other month for a weekend and we welcome any suggestions to places that we may not be aware of - trust me there are plenty of those around so please send me any ideas.  Try to keep in mind that Tori will be 4 in February and the twins are going to be 28 months tomorrow.  We also want to keep the costs down as much as possible.  We are aware of Great Wolf Lodge and friends have mentioned the Museum of Play in New York, but we are open to anything that would be good for the kids.

Monday, November 3rd, 2008 ~

     Thankfully, I completed all of the laundry before leaving Florida as it is all still sitting in my luggage, on the floor in my bedroom.  I have no energy to unpack - my cold has taken over my body.  I will not likely be able to get my Flu shot today; hopefully, the rest of the family - especially Tucker, will be able to.  I got up, got myself and the kids all dressed, dropped the girls off at pre-school and went to the vet's to pick up Nikita's remains.  That was hard.  They had her in an urn, with a clay paw print and certificate.  I didn't open the box until I got home - it's hard to be here without here (she's been with me everyday for the past 15+ years).  I then ran some errands, picked up prescriptions and Tucker's Pediasure, returned home, made some appointments and phone calls, nothing like jumping back into the fire.  Dave and I brought Tucker to pick up the girls at pre-school and then we went to the doctor's office for the Flu shots.  No one has a fever, except me - so I can't get the Flu shot today.  We prepared the kids in advance that the needle will hurt for a few seconds, but then it won't hurt any more.  Plus, we bribed them - if they were brave, they could eat out tonight, and pizza was agreed on.  Dave went first, such a big boy - no tears!  Tori surprised us going next and she was fine, no tears... then there was Avery, she didn't cry until it was time to get her clothes back on - talk about delayed reaction.  Tucker was a brave little boy, just like Daddy.  So, we left for pizza; unfortunately, we drove by McDonald's first and the kids changed their minds, yuck!  Oh well, gotta keep them happy.  I was hoping to have all of the photos scanned and links all working, but I don't... I thought I'd get the blog updated, and the links and photo's will be up and running once I get them done and sent off to my cousin, please bear with me.  I continue to receive many emails from all over the world - it is really inspiring that Tucker's website has touched so many lives, I really want to respond to everyone who emails me.

Sunday, November 2nd, 2008 ~

     I had hoped to get to phone calls, emails, etc., but spent the day with the family in our pyjama's - and loved it!  It was much needed.  I don't believe jet lag was an issue, just being out of the routine, taking in all of that fresh air are to blame.  We all even had a super long afternoon nap, I didn't even hear the phone ring through the 2 phone calls?  Sweet!  So, I guess I'll have to add emails, phone calls, etc to my 'to do list' for this week... ciao.

Saturday, November 1st, 2008 ~

     Where has the year gone, only 55 more days 'til Christmas?  With that, our vacation comes to an end.  The morning goes pretty much as planned and on schedule - okay about 10 minutes late.  We arrive at the airport, return the van (which takes more time than expected as they tried to charge more and I wanted an itemized list of charges, so they had to make corrections before I'd give them my card).  Then to get to the ticket counter, we were down three flights and all the way to the other end... ugh.  We had 45 minutes to get to screening and pick up our pre-boarding passes at the gate, ha ha ha!  Security was a nightmare, we had no lines, but again the girls did not want to take off their shoes and everyone in the entire airport knew it!  We finally got through and down to the gate with only enough time for me to take Tori to the washroom, change the twins diapers and board the plane - okay, so we almost missed the plane... that wouldn't necessarily be a bad thing.  I could have stayed another week in Florida.  The flight back was uneventful and all of the children slept soundly.  The drive across the boarder to the house wasn't fun.  The kids were tired and hungry - the two worst possible combinations we could have times 3 children.  Dave just wanted to get home - I'm sort of glad I can't hear all of the crying and screaming.  We pick up pizza and salad for dinner and come home to see a massive inflatable snow globe "Christmas Motif" in our yard with Christmas lights on our house - my house.  For the first time since Dave and I have been together - I have Christmas Lights on the house, woo hoo!  There was also a beautiful bouquet of flowers from our friends:  Lynda, Brandon, Liam & Evan, welcoming us home.  We opened the door to find the house totally decorated, the Christmas tree up, garland on the banisters & mantles, stockings hung - it was amazing... the kids were astounded.  The best homecoming I've ever had, all thanks to my co-workers at PRP.  Thank you all so much, it is breathtaking.  I couldn't have done it better.  The care put in to the decorating was obvious and greatly appreciated.  I really like the Plaque for the front door, "To protect our 3 angels when you come to call, please use the hand sanitizer on the wall.  Thank You."  It goes perfectly with the hand sanitizers you gave us!!  As I sit here, with the Christmas tree lit, fireplace on, typing my blog, I hear Tucker coughing uncontrollably and panic sets in - I know now that he has caught my cold.  Tomorrow, I will try to get to some, if not all of the emails, messages etc...  G'night!

Friday, October 31st, 2008 ~

     "Happy Halloween, Everyone!"  It feels weird not being at home for Halloween, especially since we took the kids to the "Not So Scary Halloween Party" at Magic Kingdom.  They dressed up, went trick or treating - it was fun!  So today doesn't really feel like Halloween.  This morning we decided that we would go to Animal Kingdom and then to the Marketplace to get all of our souvenirs, eat out and then go home to get laundry done and packed.  It's always nice to have a plan, especially when they don't turn out.  I had heard a lot of mixed reviews of Animal Kingdom and have come to the conclusion that it depends on the day and your children.  There were good parts, but our day started off on the wrong foot.  When we first arrived at Disney on Tuesday and got all of the tickets for everything, we were given a 'special assistance' pass that would not give us immediate admittance to events, but we wouldn't have to wait in line.  Well, during the first day, we realized they had forgotten to give us the 'wheelchair' pass.  Which was quickly rectified.  Tucker's wheelchair could pass as a stroller if looked at quickly, but he has so many additional features, you'd quickly realize that it is a wheelchair.  Anyways, the next three days went without a hitch; until this morning.  We went to get character photos with Mickey and the gang to be rejected, even after presenting the pass and explaining Tucker's situation.  Not only were we turned away upset, but the photographer and the hostess were rude.  This was Disney World - that should have never happened!  We did find a guest relations representative walking in the park with another character, who advised we'd been misadvised and that yes, we should have been able to get our photos taken, etc., just as we had the days preceding.  We continued onto a few other attractions in Animal Kingdom, but I think the setback set the tone of the day and we decided to just go to the Marketplace to get our souvenirs.  Before we left, we decided to mention the incident at Guest Relations, I explained today was our last day, we were now leaving, this is how the special assistance pass has been used all week and this is what happened today... She stood by the employee, apologized for the rudeness and then said that the special assistance card we had didn't have a "green light" stamp on it to allow us to by pass the lines for the character meet & greets, and gave us one in place of the one we had and told us to enjoy the rest of our stay?  She obviously missed the part where I mentioned it was our last day and that the incident dampened our time at Animal Kingdom - so we were now leaving.  They must have totally forgot where they worked and that this was the Year of a Million Dreams!  I only wish Walt was here, I'm sure he'd be just as unhappy as we were.  However, we did have an amazing time, for the most part - Disney was extremely accommodating, we had a blast and can't wait to return (hopefully with Tucker!)  Off to the Marketplace.  The girls each picked a doll to buy:  Avery - Little Mermaid and Tori - Tinkerbell.  Dave and I also bought them a Tinkerbell clock that Tori hasn't stopped rambling about since the first day.  We bought a bunch of t-shirts, sweatshirts, balls and a hat for Tucker - it was marvelous!  We got home, started doing laundry & packing when the doorbell rang - trick or treater's?  I hadn't bought any candy and had totally forgot today was Halloween.  So I stole from the kids to give to the ones at our door.  Thankfully only a few came by.  I didn't think I'd get everything packed, but I did, just in time for bed.  Tomorrow night, I'll be sleeping in my bed, I can't wait.  G'night!

Thursday, October 30th, 2008 ~

     Okay, I am in Florida right?  For the past three days, it's been cold.  We can't even wear shorts that how cold it is.  I'm still very sick, and Dave is taking care of Tucker when he wakes in the night so that I can rest, thanks Dave!  Today, we went to Epcot because we had lunch reservations at 11:35am with the Princesses for Storybook Dining and Photo Package in Norway.  We saw the 'Under the Seas' Exhibit with Nemo and friends, then we met up with our friend's old boss - Martha, who works for Disney and was responsible with putting us in contact with the Compassionate Program on the Friday before we left and was able to get us complimentary tickets.  We were totally enjoying Epcot (not as crowded) and would have liked to spend more time there, but we had tickets to Cirque du Soleil tonight and we wanted to make sure the children had naps.  We arrived in the Norway exhibit, lined up for lunch, only to find out - I got the dates screwed up - we have reservations for tomorrow at 11:35am.  Ugh.  The Disney staff were fantastic, juggled a couple of tables and got us seated within ten minutes, fabulous!  The food was delicious and we were able to see Alice, Jasmine, Cinderella, Belle, and Aurora.  They came around to the tables, signed autographs and took photos - the only downfall, was the table set up.  It wasn't as open as Ohana's, we couldn't see anything except three walls.  But, the food, the food was delectable.  We stopped to shop a bit more before heading to the parking lot and made our way back to the 'vacation' house.  We all had naps, woke up had a quick bite to eat (we all could have slept longer) and returned to Downtown Disney to see La Nouba.  We arrived with all of five minutes to spare, whew!  The kids settled quickly and the show began... it was phenomenal!  Dave and I agree that it was better than Saltimbanco, but unsure if it was better than Kooza?  Kooza was the first Cirque du Soleil show we saw and I don't think any of them will take it's place.  But La Nouba was recommended to me by my cousin, and he was right - it was spectacular!  Avery would jump up out of her seat and start clapping at the right times, so she obviously understood it.  Tori would be pointing and shouting with excitement with the acts and almost on the edge of her chair at times... to see their faces was a thrill for me - I only wish I could have taken some pictures of their faces.  Tucker had his moments, but he lasted without either of us having to walk him around... we just had to pass him back and forth.  I can't believe we're going home in just two days.  Part of me wants to stay to avoid all of the appointments and the reality of what the future holds for my family.  Tucker has put on a little weight and looks 100% better than he did in August, it's hard to believe the diagnosis.  I keep hoping the doctors are wrong, and when he is this happy and seems to be thriving - it's difficult to understand this illness.  I also don't want to go back because of the winter season.  Tucker may not be able to fight off any respiratory infections?  If we stayed in a warm place for the winter, I wonder if that would help?  I'll have to ask Dr. T whether or not that would help him.  I feel awful knowing that on the Monday after we return, the entire family is getting their flu shots in hopes of not bringing anything into the house that Tucker may not be able to fight off.

Wednesday, October 29th, 2008~

     I awake to a disturbance in the t.v. room... it's time to clear the air.  It's been long overdue but it's all out on the table now - so hopefully things will be able to go forward from here.  I'm not mentioning names, as it's not important.  Anyone who has gone on a trip with a number of people know that you can't please everyone all of the time, and our situation has even more issues than just a vacation.  We are all here for Tucker, we are already stressed, we have had so much information thrown at us - the worst of it being Tucker's diagnosis, everyone with us cares for him and is emotionally involved, plus Nikita's recent death.  It would only make sense that we'd butt heads at some point.  Today, is the start of a new day and we have a reservation for breakfast with Mickey and Pluto at Ohana's in the Polynesian Resort.  We arrive on schedule, get our family photo taken and get escorted to our table.  The ambience is breathtaking, we can see Mickey, Pluto, Lilo & Stitch working the room... it is a huge room.  The food is buffet style - but all items are brought to the table.  The juice is so smooth - I have three.  The waffles are shaped like Mickey Mouse - very tasty, and the characters come around to each table, sign autographs and take photos with you.  It was reasonably priced and definitely worth the price.  The twins, Avery & Tucker, were still not sure about the characters coming up to them, but Tori is starting to give hugs freely and even interact with the characters.  She howls after Pluto sneaks up behind and startles me.  Then the kids are invited to shake 'maracas' and join the parade around the restaurant with the characters... it was a great time.  The photos even turned out.  We go back to the 'vacation' house, have a nap and get ready to go back to Magic Kingdom later.  We returned to Magic Kingdom with much more success.  We explained to Tori that she could 'window shop' and then on Friday, our last day at Disney, she could buy one big toy.  That seemed to work, for the most part - after all, she is only three and a half.  It definitely wasn't as hard as it was last night!  We were able to go on and enjoy rides, get photos taken with some of the characters, etc.  Avery had a difficult time leaving rides... she's still not big on turn taking, but what two year old is?  Tucker remained an angel, taking it all in eyes wide open.  We were able to see the parade, from beginning to end with front row seats to boot - totally not planned, but worked out well.  The floats were all a glow and the costumes, what can I say - we are in Disney and it was done to the nines!  We all went to bed with with smiles and happy thoughts... I think!  We even bought the "Tinkerbell Movie" today, which was released yesterday... the girls are so excited to watch it.  Oh, in case you missed it - I strongly recommend anyone going to Disney World to pay for the Breakfast with Mickey at Ohana's in the Polynesian Resort!  As I type my blog, I realize it's so quiet tonight, did I mention that there is a massage table, candles and stereo system in our bedroom?  Dave and I could have actually have had some 'alone' time, the grandmothers would have listened for the kids, it would have been so nice... here I am sick, can't breathe, can't hear and the only aphrodisiac I have is the pine scent of Vick's VapoRub all over me... yeah baby!  When I first got sick, I went to Walgreens to purchase Buckley's - they don't carry it, or any other medicines I recognize.  Poor Dave!

Tuesday, October 28th, 2008 ~

     It's a crummy day, the weather did a complete 180.  I am sick with a very bad cold.  That will teach me for sitting outside in the hot tub in the cool of the evening.  I'm congested and can't hear out of my ears.  Today is the "Not So Scary Halloween Party" at Magic Kingdom.  Our first Disney day.  We get the kids dressed, Tori and Avery are in princess dresses that light up, and Tucker is 'Superman'.  They all look adorable.  We did not dress up.  Going to Disney was easy enough, parking was fine, but getting Tucker to the park - a whole other story.  The tram that comes and picks you up at the parking lot, is not wheelchair accessible.  If we want to hold Tucker and flip the wheelchair upside down so the wheels are in the air, we can bring it on board (his chair doesn't really fold down, seat comes off and then there's a base).  Considering it was nearly $5000.00, I decided to walk Tucker to the park myself, while the rest of the gang rode the tram.  Only took me about ten minutes.  Magic Kingdom was decorated for Halloween and it was totally awesome!  The kids were very happy, that was until Tori wanted to buy everything in sight.  She is normally so good when we go shopping - some days she'll get a treat, most days she doesn't.  It's never been an issue - but being here at Disney, it's like something else possessed her.  Dave and I were shocked.  This was not fun anymore.  Avery just wanted to run or lay down on the ground and Tucker was an absolute angel.  We attempted to get dinner only to be told that the restaurants close at 6pm?  Tonight is a special night for the "Not So Scary Halloween" but, only Cosmic Rays would be open - wish I had known that in advance.  We had maps to the park, but you really don't know what the kids will want to see or do until you get there, they'd never been to anything like this before.  Needless to say, with three families travelling together, it only makes sense that frustrations would flare and tonight they did.  It got dark very quick and having not been there in the daylight, was getting difficult to get around.  Avery vomited and then seemed fine, I didn't feel well, sore throat, couldn't talk, couldn't hear... we decided that we and the kids had had enough and we opted to go home.  Too bad, I really wanted to see the fireworks and the parade.  Oh well, this vacation is about the kids; hopefully tomorrow will be a better day on so many levels.

Monday, October 27th, 2008 ~

     We decided to drive to Cocoa Beach so that Tucker, Tori and Avery could have a 'beach' experience.  In the old house, we had an in ground pool, and when we went to my parents timeshare this past summer, we went to the pool - but they have never been to a beach, let alone the 'ocean'.  It was a spectacular day!  The weather was perfect, the sun was beating down, the sand was hot and the water cool.  At first the kids were terrified of the waves, but that subsided and Tori seemed to really enjoy the ocean.  Avery continued to admire the ocean from a far and loved being in the sand.  Tucker was content being held by either grandmother.  Dave did some body surfing and I let the kids bury me in the sand... totally cool and quite comfortable actually.  After two and a half hours, the kids decided that they had had enough and away we went.  We began our drive back, planning a 'detour' to the Kennedy Space Centre.  By the time we arrived, all three children were sleeping soundly and we didn't have the heart to wake them up (maybe the next trip), sorry Dave ;(  Did I tell you that my hubby is an aviation geek?  Most people will see an airplane and say, "There's an airplane!"  Not my hubby, "There's a "Sky Service, A320" because he can tell by the size and the winglets???  Anyways, Avery is totally infatuated with aircrafts.  We can be in the house, car, wherever, if she so much as hears a plane, she stops, her eyes pop out of her head, her right arm goes up with finger pointing to the ceiling/sky, "plane".  All remains quiet until she can no longer hear it and then she resumes her activity.  I keep telling her that she's going to be my little pilot.  It's late getting home, so we stop off to get some McDonald's.  Yuck, but it is fast, and the kids love it?  Tori has been talking about Nikita today.  I have to remind her that Nikita died and has gone to Heaven.  Tori keeps saying that she wants Nikita, or she wants another puppy?  We keep saying that we will talk about it later... I hope she gives up soon, it's breaking my heart to hear her asking for another dog.  My mom and I sit outside in the hot tub for just over an hour - so relaxing, so peaceful.  It's been very nice not having so many appointments to run to.

Sunday, October 26th, 2008 ~

     Tucker didn't sleep well, or so Dave says.  Dave said he woke up at 11:30pm with Tucker and every hour thereafter?  I don't know because I actually slept from about 10:30pm until 7am - I can't even remember doing that before I was pregnant with Tori?  It's probably because his bedroom is on the other side of the house and I can't hear all of his 'sounds' and 'whimpers'.  Today we agreed to book tickets at "La Nouba" -Cirque du Soleil for Thursday, October 30th, the kids should love the colourful costumes & make-up and this show is performed on trampolines - I'm looking forward to see this one.  Dave and I saw Kooza two years ago, Saltimbanco earlier this year and we loved them both.  This will be the first time the kids get to come, I can't wait to see their faces.  I cooked bacon and eggs for everyone this morning and then we all jumped in the pool and hot tub, so relaxing.  I prepared lunch for the kids and then my Mom and I went to Downtown Disney to shop for some scrapbook supplies as Erin has so kindly offered to do scrapbooks for the girls.  I can scrapbook, but I am terribly inexperienced.  Tori walked with Baba, Dave's mom, to the clubhouse and then onto the playground.  If you've never been to Disney you won't believe the size of the shops... we only had time to go into one store and I know I still missed a bunch of stuff.  I think my cousin said something about "Disney is good for separating you from your money"?  Yep... totally agree, it sucks that I want to get everything for my kids - especially when you can't afford to buy them everything.  But for the most part, the products are made well, if that's any consolation?  Good thing Dave stayed at home to nap, he hates shopping and he hates crowds... this would be an absolute nightmare for him!  I had fun, they have so many different 'neat' items - it is nice to window shop in Disney (but, it's so very expensive!)

Saturday, October 25th, 2008 ~

     The girls and I woke up at the same time, got them dressed and eating breakfast by the time the rest of the family got up.  They all knew the night before that we were going to Sea World today, there was anticipation in the air for the unknown.  We arrived by 10am, as instructed by the representative on the phone when I purchased the tickets, only to see a mass of people - poor Dave, he hates crowds and we're not even in the park yet.  It didn't take us as long as I had thought it would to get through the lines and we were on the inside.  Sea World is huge!  We headed over to book our Polar Expedition Tour and were able to get the next available tour which was at 2:45pm?  Apparently, we were no where close to being first to sign in... oh well, we will see how the kids hold up - Tori is going through a Penguin phase right now and would love to pet a Penguin.  We decide to start off at Turtle Point, Dolphin Cove, the Whale & Dolphin Theatre and then it was noon and lunch was a necessity.  We ate at the "Smoky Creek"; yummy very tasty and highly recommended - by me of course!.  After lunch we took a video of Tori harnessed on a trampoline in the Xtreme Zone ($8.00 for 2minutes).  We're not sure if Tori was unsure of the whole thing, or scared to death?  I don't think she knows?  We had initially planned to leave after lunch so the kids - Tucker, could stay on schedule, but they didn't want to leave and everyone was having a great time, so we didn't want to disappoint them.  We continued to the Penguin Encounter and began trekking to the other side of the Park, a good long walk.  "Shamu's Happy Harbor" is for the young children, there are rides, a huge (4 storey climbing structure with ropes, slides, tubes, etc), 'Shamu Express' roller coaster - loads of fun, but only goes around once. Here is a picture of Tori & I on the Shamu Express.  There is a wading pool with water springs shooting out of the ground... stripped the kids down and they had a blast - so did we (we kept our clothes on though).  Since it was 2:30pm and we were still there we decided to take the Polar Expedition that we had paid for (we thought it was just to pet the Penguins which was fine; however, it was an hour educational tour with a 2 minute Penguin petting at the end - I don't recommend this tour for those with small children).  It was now 4 o'clock and the day was so hot, we decided to head back to the 'vacation' house for dinner and a swim - what a wonderful day.  Tori's favourite part of the day was trick or treating around Sea World... she didn't even dress up!  Tucker was so happy all day, he didn't even close his eyes for a cat nap.  Hopefully that will mean he'll have a good sleep tonight?  I can always hope.

Friday, October 24th, 2008 ~

     Woke up this morning, on my own - not by the kids or Nikita (I miss her so much, I'm surprised the kids haven't mentioned her - I'm sure that will change once we return home).  The girls were the first to wake and when I went to get Avery, she said, "Happy"... I translated that to mean she's happy and I've never heard her say that word before.  A good night's sleep made the world of difference with Tori and she said that she loves the 'vacation' house, not to be confused with 'our' house.  I take the girls into our room and we all get showered and dressed.  Slowly, everyone else begins to wake on their own.  We all needed that sleep.  Unfortunately, it's pouring rain and we decide to ditch Universal Studios, get our bearings, some groceries and go out for lunch.  We figured it would be better to keep the kids on schedule for today as tomorrow we go to Sea World.  After lunch, I fell asleep with Tucker - for two and a half hours, I feel so refreshed!  I can't believe it, I can never sleep during the day. The weather cleared and we were able to go for a swim and a hot tub - the kids were ecstatic!  We had dinner in tonight, I made fajitas and salad, which was nice and then watched the Sex and the City Movie with my Mom and Mary (mother-in-law).  Although the movie had bad reviews, we all enjoyed it!  I better go to bed, it's going to be another long, but exciting day tomorrow!

Thursday, October 23rd, 2008 ~

     We made it!  After an exceptionally long day, we are in Florida.  Let me back up a day... although we did not leave when planned right after lunch, it was nice not to rush around.  We arrived in Buffalo, checked in to the hotel, and drove to the Walden Galleria Mall to eat dinner at a restaurant called, "The Cheesecake Factory" which was recommended by Dave's co-worker Chris P.  Oh my goodness, the restaurant was beautiful, the menu had 20 something pages and the back two pages were only of a variety of cheesecakes - totally sinful, but we loved it!  We walked around the mall for a bit to try to tire the kids and then returned to the rooms.  We woke up and got ready for the 'big' travel day.  First time on an airplane for all of the kids and they were so excited.  We had breakfast at the hotel and then Dave dropped the kids and I at the airport and then drove back to the hotel to park the van (www.ParkSleepFly.com).    He returned by shuttle.  Jet Blue was exceptionally accommodating - thanks Jet Blue!  I only wish the Transportation Security Administration was.  Everyone is required to take off their shoes, coats etc... not my girls, they were screaming!  Plus, while trying to console them, I had to take Tucker out of the wheelchair so they can swab it down.  Okay, I work in the field, and I understand security - now I can actually sympathize with other travelers with similar experiences and why they get so wound up.  We sat down at our gate and watched the planes.  We knew that the plane was delayed by an hour before we made the trip to the airport; but with Tucker's wheelchair, iv pump, pole, medications, etc. we wanted to make sure we had enough time.  We then found out that the plane took a mechanical out of Boston.  Oh no!  To my surprise, Tori, Avery and Tucker along with the other maybe dozen or so children flying, were completely well-behaved.  I was so happy about that especially since it meant their sleep schedule would be thrown off (which is why we planned to fly at noon).   At 2:45pm, the plane is boarded and the pilot is given the okay to take off...  to see the faces on my three beautiful children will be something I'll cherish.  They were over the moon!  Around 5pm, we safely touched down in Orlando, hired a porter and went to the car rental area, all went without a hitch.  Everyone was getting cranky and irritable having not anything but snacks since breakfast.  We drove to the house which we had rented only to listen to Tori crying and upset wanting 'our van', 'our house', 'her car seat'... nothing we did would shake her mood - couldn't really blame her.  At least she broke down with us, not at the airport.  We arrived at the house - it is stunning!  A friend of a friend recommended it to us and we were apprehensive at first but took the chance and we are so happy that we did.  It was exceptionally clean, well maintained and we were even greeted with freshly baked chocolate chip cookies.  The master bedroom had a vase of a dozen fresh roses and a massage table.  We rented a 5 bedroom/5 bathroom house in a gated community owned privately by a couple who rents out 5 homes, it has it's own private heated pool, hot tub, laundry, etc. It's only about 3 miles from Disney.  Check it out on www.romancingthemouse.com.  If you choose to book at one of their properties, please let me know in advance before you book (so I can give you my email address) because they have a referral program and the next time we have the opportunity to come down, we'd book here again - we wouldn't even bother look elsewhere.  Sorry, but I'm exhausted.  G'night!

Wednesday, October 22nd, 2008 ~

      I just wanted to send a warm goodbye to everyone before we leave today for Disney.  I will be bringing the computer down to try to keep up my blogs, but I don't plan on answering emails , just so everyone knows -  I need to spend time with Tucker, Tori, Avery and Dave.  I am looking forward to 11 days without therapy/doctors/ appointments or having to do anything.  I hope the weather holds out.  Thanks for everyone's support and fundraising efforts, I know that the money raised from the Oil Change Fundraiser by Ladies Choices Autocare owners and staff helped make this vacation less stressful as we don't have to worry about the finances as much, just making beautiful memories with our children.  Dave's charged up all the batteries, and is sleeping soundly and charging his.  It's 5am, and of course I'm not sleeping... I've been up since just after 4am, with thoughts in my head if I have everything?  I hope so!  Oh, don't forget, the Hamilton Volunteer Firefighters are having a Car Wash fundraiser on Saturday at Station 24 in Waterdown...  Talk to you all when we get back - Mickey, here we come!!

Tuesday, October 21st, 2008 ~

     The girls were up unusually early, so we all went downstairs, and as I expected on the way down, they both were shouting "Nikita, where are you?"  I told them again that Nikita died and she is up in heaven and wouldn't be coming back.  Tori was upset, but not crying... "Why?  I want her here."  I told her that Nikita would always be with us in our hearts and in our memories, she's watching us while she plays with other dogs up in heaven - it will be like having our own Angel watching over us.  The subject quickly changed and she surprised me by saying, "I want a new dog, a big dog, with spots and big black eyes."  (I think she's been watching 101 Dalmatians lately)  I call Dave at work to let her talk to him, as he wouldn't believe it if I said it.  He told her we would think about it after we came back from Disney.  I did some running around preparations for our trip and when I was home while the kids were at the gym, I swear I could hear Nikita walking around downstairs...  I guess it's only right that she'd stay at home.  Tonight when Dave came home - I was out, Tori told Dave, "Avery, me and you have to go get a new puppy" and she ran to the door and began putting on her shoes.  Dave told her that we would talk about it when we came back from vacation.  We have decided, for now, there will not be anymore pets during this time.  But will consider it in the future.  It's going to be really hard on me as the longest I've gone without a pet was two years, while away at school and I couldn't take the feeling of not having a pet, which is when I bought Nikita.  We may get one sooner than Dave thinks!  But not yet... there isn't a pet that can replace Nikita.  Although I miss her, I feel I have done right by her... I hope she understands.  Thanks for everyone's emails and phone calls... she was a member of our family.

Monday, October 20th, 2008 ~

     Well, I woke up only to go downstairs and again see Nikita lying motionless on the floor.  I summons the courage to walk over to her to see whether or not she's breathing... whew, she is; but she doesn't even acknowledge I'm standing beside her until I actually pet her... poor old girl!  This helps make my decision a little bit easier - if you can say that.  Once the kids are dressed, I take lots of photos of them with Nikita together and separately.  It's almost if Nikita knows and lays in one spot as all the photos are taken - generally she runs in the other direction.  Dave and I kept going back and forth last night about what is in Nikita's best interest, and I have to admit, I'm not decided yet.   I've always had dogs growing up, but never one I had to 'let go' of, my dad always took them to the vet.  I take the girls to preschool.  On the way back, I call and make an appointment to see the vet and tell them I am thinking of putting Nikita down.  I also express that I want a visit with the vet first to make sure I've considered my options and that it is the right time?  I go home after another appointment, pack a bag full of a variety of treats and take Nikita to the vets.  I can't even go in right away, I sit on the curb and let her walk around the big, colourful Maple tree with all of the orange and yellow leaves on the ground below, it's such a beautiful picture, so I take more pictures of Nikita, give her treats and cry... no, not cry - I'm bawling!  As I sit here, I start to cry all over again.  When I finally stop crying enough to take Nikita into the Vet Clinic, the girl behind the counter quietly says, "Nikita"?  I nod, yes.  I put Nikita on the scale to weigh her as if to help me make a decision... she's lost over 5kg since June (she's loosing muscle mass).  She comes over with a box of tissues, and I happily take many.  She starts telling me that it's okay and maybe the Vet can give her something for the pain, etc.  I don't answer her, as Dave and I have discussed at nearly 16 years of age, it wouldn't be the responsible thing to do, keeping her medicated just to make it more comfortable for her in order to have her stay with us a little longer - it would be being selfish.  I get taken into the room almost immediately, and I sit just petting her, giving her more treats as I don't know what to say to her.  The Vet comes in - Sarah, I specifically made the appointment with her, she is so kind and gentle, I wanted that for Nikita - and she's seen Nikita a few times now.  I begin to tell her about Nikita, and she remembers about Tucker and I then tell her about Tucker's recent diagnosis.  I continue on with Nikita, her incontinence, incessant barking at nothing, not being able to get up and -down unaided, at times - she doesn't even 'sit' anymore, she's either up or down, nipping at the kids, etc.  Sarah just listens and tells me that other than the muscle mass loss, and the mass on her stomach without doing the tests, there's nothing more she can do?  She mentioned that she can give some medications for her pain, and possibly some medications for her kidneys (if testing revealed there was an issue)... but it wouldn't be a complete fix, just a bandage for who knows how long.  I mention to Sarah about us leaving in two days and being afraid what may happen while were gone, Nikita's never been in a kennel and the only people who have really looked after her are coming with us, except my old roommate - Julie, but I'm also afraid what it may do to Nikita while were gone.  Suddenly, a light comes on and I know it's time... there is no way that I can take Nikita home, only to return in a couple of weeks, months - I am too upset, I can't do this again!  It is time to say goodbye to the best dog, companion I've had.  I had her through college, work, boyfriends and numerous moves - she always adjusted beautifully and loved me no matter where we lived.  Dave and the kids were the 'additions' not her...lol.  She accepted Dave and the kids and protected us all and became a wonderful friend to Tucker.  She will be dearly missed and I don't know how I'm going to tell the kids?  That is going to be so difficult.  I tell Sarah it's time and she goes over the procedure, asks if I want to stay - definitely.  She mentions that she needs me to sign some papers and quickly goes and gets all of the things she needs.  I get on the floor with Nikita and am now bawling uncontrollably; the assistant comes back in with a blanket and they prepare me a little more for what may happen as the drug is administered.  I continue to say my goodbyes and run out of treats, the assistant brings in a whole bunch more and I give the nod to Sarah, who then begins.  I keep talking to Nikita as she drifts off... I tell her she'll be the first one to see Tucker walk and to take great care of each other when he meets up with her.  She's gone but I'm unable to leave.  I finally let go and quietly leave.  I call Dave to let him know that Nikita is in heaven, I can't talk right now.  I go home and continue crying and have another whopper of a headache.  I watch the clock, waiting to go pick the girls up from preschool.  I pick Tori and Avery up, they say goodbye to their teachers and friends until we return in November from Disney... they are so excited!  We get in the van with Tucker and Nanny Esmie.  I turn and say okay, everyone buckled?  Let's go home and see Daddy.  Tori adds, "and Nikita", I say, "let's go see daddy", again she adds, "and Nikita"... I quickly change the subject asking them about their favourite part of the day, who they played with, etc?  Tori forgets for the moment.  We arrive and Dave isn't home, damn.  I take my time getting everyone from the van into the house, I even pretend I don't know what key opens the door and let Tori and Avery try to tell me which one.  The door opens and here it comes.... the girls (in stereo) "Nikita, where are you" and they both go running through the house with their shoes on, as this is the first day that Nikita isn't lying at the front door to greet them.  "Mommy where's Nikita?"  I re-direct everyone to wash their hands and face... Where is Dave?  I get everyone to the table and Dave comes in, I say it's time... he says "I thought we were waiting until they asked?"  I said, "They haven't stopped!"  We bring everyone into the playroom, and I mention that Nikita isn't in the house with us anymore, that she died and went to heaven, I asked Tori if she knew what that meant?  She didn't.  I explain that when people and animals get old, the parts of their bodies don't work as well and sometimes even stop, I told her that Nikita's heart stopped and she died and wouldn't be coming back to us.  Tori cried, "I want her here, go get here, I want her."  I re-explained and just held her for a while.  Avery nor Tucker seemed to understand.  Nothing more was said. At bedtime, I actually went to let Nikita outside and fill her water dish... which wasn't there and then I remembered.

Sunday, October 19th, 2008 ~

     Good morning!  I actually fell asleep quite quickly, and sad to say that I didn't even hear Dave wake up with Tucker & Tori or even when he brought him into bed with us?  Apparently, I needed it.  Tori woke up very early, "Mommy, the sun is up".  I rolled over and saw Tucker and Dave passed out beside me, so I decided to go lay in Tori's bed with her, as I knew Dave was extremely tired.  By 8ish, the girls wouldn't stay in their beds/room no matter what bribes I suggested, so we quietly went downstairs and made their breakfasts, prepared Tucker's meds and tidied up the mess I had no energy to clean from last night.  Dave and Tucker woke up and joined us by 9:00am.  Unfortunately, Nikita is having more and more difficulty getting up, walking around, etc.  I'm not sure if I've mentioned her in all of this.  Nikita is my (now ours) nearly 16 year old black lab cross.  When we first moved into this house, she was being incontinent and just standing in one spot barking all the time, it wasn't looking good.  Then for a while she got better and now she's back on the downward trend.  Dave and I go back and forth with what we should do with her.  Her and Tucker have the best bond.  But we don't think leaving her at home with Nanny Esmie for 11 days will be good for her either - we were really hoping things would improve and she'd hold out for her buddy 'Tucker'.  As I sit here and watch her get up and down, I think I've made my decision, boy is it going to be hard as I have had her since April 1993.  I guess we better get some recent pics with her and the kids today.  I think today may be another pyjama day as everyone still has the sniffles and coughs.. so sleep and fluids will be the best thing before we leave for Disney.

 Saturday, October 18th, 2008 ~

     I didn't fall asleep until sometime after 2am, and Dave left at 6:30am to go to Ladies Choice Autocare for the "Oil Change Fundraiser".  I do not want to get up, but when I look out the window it looks like its going to be a beautiful fall day - glorious!  I get the kids all dressed and fed, with the help of Nanny Esmie.  As I prepare to go with Tucker to Ladies Choice, the girls get upset... so, I suggest that they go to the big park in Waterdown and I ask Nanny Esmie to take them to McDonalds for lunch.  That seems to band aid the situation for now.  I do hate doing that to them, but there won't be anything for them to do at Ladies Choice, and with all of the cars that we are hoping to attend, I'm worried something could happen.  I arrive at 10am, the balloons, the signs, 'Tucker's Pumpkin Patch', advertisements and raffle box all decorated with various photos of Tucker and the family, it's spectacular!  I was then told that all of the oil, windshield wipers, windshield washer fluid, Tim Horton's coffee and donuts were all donated, very generous.  It is truly a beautiful day.  The phone has been ringing with people calling having read this morning's article in the Hamilton Spectator, wanting to book appointments, make donations or simply offer support.  One woman - Beth, called as her nephew passed away from Leigh's Syndrome at 13 months old back in 2002; her husband, grandson and her (who no longer have a vehicle due to medical reasons) take the bus and then walk about 4 blocks if not more to attend the event to personally give us her phone number and a donation.  Dave and I were at a loss, that was so touching!  I had another customer - Frank, tell me that although his child is 17 years old now, he was quite ill as a child and has some idea of what we are going through - he wanted to express that there are many people who are strangers, like him, who are touched by our situation and want to help out as best as they can.  It was great to see the support from friends and perfect strangers that came out today - I could not be happier.  Tucker was having a great day as well, I had anticipated taking him home around 1pm for his usual nap time, but he was holding his own and loved being around all of the cars - I didn't have the heart to take him home, until almost 2:30pm, he started to get fussy and I went to take him home - Tucker fell asleep before we left the parking lot.  It was a tiring but very successful day, $1996.00 was raised to support Tucker!  With that, I am going to go to bed with the kids in hopes of actually getting sleep.  Good night!

Thursday, October 16th, 2008 ~

     Well, it's 1:14am, so I guess this can still be considered Wednesday.  As usually, I'm having difficulty sleeping as is Tucker.  He seems to be all stuffed up, but his lungs are clear?  I know, it doesn't make sense to me either; but, Dr. T. explained that due to the muscles relaxing  everything is loose in his throat, so it makes his breathing sound raspy and is why he is drooling more now than he ever did while teething.  I think the hand splints are helping him a bit, his left hand doesn't seem to be as closed as it has been, except it is still in a fist when he crawls - that can't be comfortable.  Tucker's sleeping pattern is still not improving so he sleeps with us nightly; although he doesn't really seem to sleep, it's more of tossing and turning while whimpering or crying and repeat with intermittent times of quiet.  Nevertheless, I'm still not sleeping.  Case in point it is now 1:20am.  Anyways, now that his MRI has shown that he has brain abnormalities and has a diagnosis, Dr. T. has said we can try giving Tucker some Melatonin.  I know that sounds so cruel, just to get some sleep, but Tucker needs it just as much as Dave and I do.  I'm just jealous that they'll be getting sleep and I still won't be able to... as my mind keeps wandering.  Which is why I'm still up at this hour after a full day.  I don't even know where I should begin.  As you know, I'm a police officer.  People who become police officers have a desire to help others, which is why I have wanted to be one since I was a little girl.  Through the years, there have been many wonderful charities or causes that have come up requiring donations since I have been on the job - but none have affected me personally, until now.  I must say I am completely amazed by all of the emails, phone calls and cards that I have received.  Many are from people I may have worked with or at least know of, but there have been numerous from people I don't even know.  To have so many people come together to support Tucker and our family is truly remarkable!  Dave and I have been told of various fundraising events that our co-workers have be arranging to show support and help us with costs associated with Tucker and to make wonderful memories with our family with the little time that we have left.  With that in mind, I want to let everyone know that to date, we have ordered:  Tucker's wheelchair, walker and feeding pump/IV pole.  In purchasing his walker, Dave and I had no choice but to rip up the carpet on the main floor in order to put down hardwood so that Tucker would be able to move easier (this was not something that we had anticipated, but when he was getting measured for his walker at CDRP, he was not able to move over the carpet very well).  We've also had an older wheelchair retrofitted so that Tucker had somewhere to sit comfortably in the house as he doesn't have the strength to sit upright and often will slide down/off where he is sitting or slouches which hinders his breathing.  There have also been other minor costs that we've just paid for as we know it will make Tucker's life easier, or our time with him more memorable.  You may be wondering why I'm going through this, but some people have inquired what the funds collected are being used for?  I think it's only fair to let everyone know...  Dave and I do not yet know what further costs are going to be incurred to care for Tucker, it's been mentioned that he may require around the clock nursing.  Which means he will likely require a hospital bed and additional equipment at the house:  oxygen, stats monitor, etc?  I really don't know because we haven't been put into that position as yet.  People know that we have a nanny hired through Canada's Live-In Caregiver Program as Dave and I are both shift workers and had no one to care for the children when I'm was afternoons or nights and he's on nights, so our only solution was to hire a live-in nanny.  Now that I'm off work, we considered breaking our contract but decided against it as she has been with us for over a year, she knows the children, their habits and routines, she loves them and they love her.  She provides consistency during this difficult time and if Tucker gets re-admitted to the hospital we don't have anyone to care for the girls, so we chose to keep her.  We also chose to put the girls into daycare two full days a week.  Not only do they need a break or outlet as well as friends; but it allows me to schedule more of Tucker's appointments on those two days, as opposed to always leaving the house with Tucker, with the girls being upset and wanting to come with us - not realizing that he's going to the doctor's, for therapy or to the hospital.  It's emotionally draining.  Dave and I try to balance time with each of the girls and when we go out it's always to do something 'fun' or for lunch... so I can only imagine that they think this is what we do we Tucker on a daily basis which isn't the case.  I want s to be able to go somewhere for the weekend every other month or so before Tucker is tied up on tubes 24 hours a day, which will make it more difficult.  I want/need the girls, Dave and I to have lots of photos and experiences to remember Tucker by.  I realize that the girls may not remember everything or may even forget Tucker, eventually, but right now we are trying to do the best for Tucker, Avery, Tori and us the only way we know how and we shouldn't just be sitting at home, waiting... we should be out there living, making Tucker, Avery and Tori smile!  There are many days I don't want to get out of bed, partly because I probably was just able to finally drift off and partly because of the sadness I feel for Tucker, our family and me.  It's not fair, and although I know there are other families out there with greater tragedies, this is mine and it weighs heavily.  Are we doing the right thing, should we be doing this, are the girls going to be okay, what should we do for them, the list goes on and on... unfortunately, there is no book to help us.  Now that I'm completely sidetracked, I just wanted everyone who is making donations, holding fundraisers, etc to know where the money goes and why we made certain choices which may be outside of our means, but we are doing what is best for our family, besides, isn't that what a line of credit is for?   Also, I want to send an enormous "Thank You!" out to my fellow co-workers, Dave's co-workers and the volunteers at Station 24, we appreciate everything you are doing for Tucker and us, by spreading the word, raising awareness and funds for this horrible disease.  Any funds left, after Tucker is no longer with us, will be donated to McMaster Children's Hospital in Memory of Tucker for Mitochondrial Disease Research!

     Phyllis along with two medical residents attended our home today to check up on Tucker.  Phyllis weighs Tucker on the same scale every other week and on her scale today, Tucker weighed in at 10.66kgs.  That's great, at least he's not loosing weight.

Tuesday, October 14th, 2008 ~

     Ok, I'm stuffed, no pun intended!  I hope everyone had a wonderful Thanksgiving.  I was able to have both sides of the family here, Dave's on Saturday and mine on Sunday.  I know, everyone thinks I'm crazy - but it's my favourite time of year and favourite holiday!  So, I cooked a ham dinner and then a turkey dinner - lots of food left over, and now in the freezer to make other 'quick' meals as needed.  It was great for Tucker to see the entire family this weekend.  Everyone in our house has coughs and sniffles, which has made me a paranoid parent, but with that aside all is going not too badly.  Tucker had a follow up with Dr. Tarnopolsky (Dr. T from now on), on his scale Tucker weighed in at exactly 11kg's and 83cm - "WOW"!  He's grown more in the past month and a bit than he has in the last year!!  Dr. T says that's wonderful and it shows that Tucker's body is absorbing the Pediasure, vitamins and enzymes and not rejecting them.   Which I think means that Tucker is getting a little stronger and may have a better chance of fighting off some viruses should he catch one.  It was also suggested that Tucker get the Flu shot, which makes me more nervous, but Dr. T. assures me that getting the Flu shot is better for Tucker than if he were to get the actual Flu, so that's the number one priority upon our return from Disney.  I'm not looking forward to the upcoming winter!!

Thursday, October 9, 2008 ~

     What an exhausting week, yes I know it's the same old Tucker not sleeping so we don't sleep, but it is a little more than that.  Making his necessary appointments, attending various appointments, planning our vacation, running the house, spending loads of time with the kids and answering phone and emails (which is the nice part with all of the support we've been getting).  This is all new to me and I don't know when is the 'proper' time to say "thanks", but I don't want anyone to feel slighted or unappreciated, so I thought until I can actually get around to do the thank you notes, I would like to say thanks to everyone who has sent us cards, letters and emails, the prayers and kind words give me strength and hope.  Not only have our family and friends offered assistance, but both Dave's and mine workplaces have been doing a lot of 'behind the scenes' stuff, that we still aren't privy to, but know that it is in the works... it's been fantastic, as I've said, the more involvement the more the awareness spreads and the closer we are to treatment and hopefully a cure - so to all of our co-workers, God Bless!  As you may or not know, in addition to Dave being a fulltime firefighter, he also volunteers where we live, and the volunteers have offered to hold a "Car Wash" to raise funds for Tucker; well yesterday, we attended for a family photo at the fire station and Tori was being little miss hostess and doing the introductions, it broke my heart to hear her say, "This is Tucker, he is very sick."  So, I guess that's my answer - she is aware of what's going on, she just doesn't fully understand what's going on and just how sick Tucker is, my eyes are filling up again as I type this.  I definitely need to get the girls into see a Child Life Specialist or similar, I want them to already have a bond established with someone before hand, or it will be that much more difficult at the time.  Even Avery seems more affectionate towards Tucker than usual.  Each morning she wakes up and goes to look for Tucker in his room first, and then climbs on our bed to see him there and leans over and kisses him repeatedly.  I can't count how many times a day she kisses him - but it is so sweet to watch.  Tori is just as loving towards Tucker.  Well, I should try to get some sleep, lots of preparations to be done for Thanksgiving Dinners.  From my family to yours, have a wonderful holiday with family and friends and be truly 'thankful' for each day you all have together.

Monday, October 6th, 2008 ~

     Dave is finished his nights - thankfully!  It's been a rough set, last night being the worst.  Both Avery and Tucker were crying and inconsolable.  Tucker was already in bed with me, I had no choice but to bring Avery into bed with us as well.  She surprisingly went back to sleep within a half hour after playing with Tucker for a bit.  Tucker on the other hand decided that since it was 4:17am, it was time to get up and wanted to go downstairs.  It probably would have been easier for me to take him and the feeding pump & pole downstairs than to stay in bed with him crying, but my body just wouldn't move - total exhaustion.  I'm glad Tori is sleeping soundly in her bed - one of us should get a good nights sleep.  Eight o'clock this morning came way too quick - I don't think I had any sleep last night?  Dave brought the girls to preschool this morning, and I promised them that I'd pick them up.  I'd hope to get some sleep but that opportunity never came.  Now, the kids and Dave are in bed the house is quiet and although I'm exhausted, my mind keeps turning.  I can't even think complete thoughts before my mind is off on another tangent.  I just want to make sure that I'm doing everything I can for Tucker, wanting and hoping that something I do may help prolong the inevitable, maybe buy time for the doctors to find a treatment or even a cure ~ I pray for a miracle each night.  I don't know how many prayers God needs as from the emails and phone calls, He should be inundated with multitudes that you'd think something would have happened by now?  Maybe it's because I'm so angry the prayers aren't going through?  I don't know, then I doubt that there is even a God?  I just don't know why this is happening to Tucker, why our family?  I know that no one has the answers, I just keep asking the same questions over and over again.  Well, it's 12:27am, I should probably try to get some sleep as the next two days have appointments! 

Thursday, October 2nd, 2008 ~

     Today, one of Dave's friends 'Fil' called.  He is the Banquet Manager at the Grand Victorian Convention Centre in Mississauga.  We had attended another friends wedding there a couple of months earlier and the food was fantastic! Fil mentioned that he had received our message and after viewing Tucker's website he wanted to help out anyway he can.  So, Dave and I drove into Mississauga to speak with Fil.  Fil and the General Manager advised that they were willing to donate the Grand Victorian Convention Centre for Tucker's Fundraiser in February - thanks, Fil!   We were looking for a place that would be able to hold the number of people who wanted to attend Tucker's BBQ Fundraiser in September; but I also wanted it to be a beautiful night, with it being for Tucker and the week before Valentine's.  I think we found the perfect spot and I know everyone will have a lovely time.  The convention centre is in the Radisson, so rooms can be bought which will help make the night a good and safe one!  The fundraiser will be on Friday, February 6th, 2009 with dinner at 7pm and dancing to follow (cash bar).  Our friend, Travis, who volunteers with Dave has offered to D.J. for us - thanks Travis!  Tickets will be available (once printed) for $60.00 per person, and people can purchase tables of ten for them and their friends.  Don't forget, it's the week before Valentine's so come out for a nice evening out and support a worthy cause!  One less thing I have to worry about.  So many people wanted to support Tucker when we had his BBQ, yet I had totally underestimated the number - I hope we have enough room at the Grand Victorian!

 Wednesday, October 1st, 2008 ~

     I can't believe it's October already, only 22 more days until we go to Disney for 10 days free of appointments, yippee!!  This morning was great for the kids, Santa came to our home.  I think I mentioned that the Flamborough Santa Clause Parade Committee annually chooses a worthy cause to donate $500.00 to and this year Tucker was a recipient of their generosity.  Tori had been dancing around all morning totally excited for Santa's arrival, then did a complete 180 once he showed up at the door.  She was very shy, but happy.  Avery wanted no part of Santa and I don't think she cracked a smile - poor Santa ;(  Tucker, seemed happy to see him at the door, but once he came in and sat down on the couch, Tucker was reluctant to go to him.  He sat on Santa's lap for a few minutes then he had to sit with Dave.  I'm still hoping for one good family photo?  I guess I better start thinking about Christmas, there is so much we want to do with the kids, so many things we want to buy for them; unfortunately Tucker will not get to experience many of them:  baseball bat, ball and glove, a bicycle, etc.  So, I keep telling Dave that this year he must put up the Christmas lights on the house, we've been together for 7 years and they haven't gone up once!  I'm to the point I may have to call one of those companies that hangs lights, agh.  I want the house 'done to the nines', so to speak:  lit garland down the banisters, garland on top of the fireplace mantles with 5 decorative stocking hooks... I can see it in my head, but my desire for perfection is giving me decorators block!  I need one of those designers that come in and do your home / offices for the holidays.  All I know is that I better think about it fast as I want the house decorated as soon as we return from Florida - we don't know what time we have so we will make the best of what we have and I think the kids will be amazed.  Just seeing their faces light up will make me happy.  I should get my mind off of Christmas long enough to think about Thanksgiving, as I am cooking dinners for both sides of the family on Saturday and Sunday.  Which I love as it is one of my favourite holidays, it will just keep me busy... for a little while.

Tuesday, September 30th, 2008 ~

     Around 6pm last night, after not feeling well for most of the day, I took my temperature only to find that I have a low grade fever, not good.  I hope it's just a 24 hour thing, I can't afford to be sick for any longer.  I woke up this morning, and I feel a little better than I did last night, but I'll keep popping the pills in efforts to hopefully avoid becoming bedridden.  I checked my emails this morning and have received one from the UK.  A father who said his son also has Leigh's Disease.  He said he'd found my website and was glad that I had made one; he had wanted to do one himself but hadn't gotten around to it.  I was sorry to hear about his son, as I do all too well understand his feelings of anger, disbelief and frustration.  Yet at the same time, I was happy to know that my site, Tucker's Story has crossed the ocean, the word is getting out - my promise to Tucker is coming to fruition!  I pray that anyone who reads this site shares it with everyone in their address book!  Today we received a generous cheque from the Compassionate Committee at my work that will pay for Tucker's wheelchair, from the bottom of our hearts, thank you!  We had a morning appointment with the funeral home that we've chosen and have made the necessary pre-arrangements so that when the time comes, we won't need to think about the important decisions we need to make for Tucker, they are almost completed - we want the best for our little boy and I've said this before, he deserves it!  This afternoon, Tucker had another appointment with the Dietician/Nutritionist, Tucker weighed in at 10.5kgs, fantastic!  I made sure enough supplies were ordered so that they will arrive well in advance of our departure to Disney World, one less thing to worry about.  Tucker is still not drinking from the bottle, which has been going on for nearly two weeks which concerns me.  We always offer the bottle first, he will sometimes take maybe half an ounce, if any, then we have no choice but to provide his milk, followed by water through his G tube.  His eating has also slowed, and I'm hoping that it is all because of the coughing and sniffles.  Sunday night he actually stayed in his bed all night, but then on Monday night he was back in our bed.  Not that we mind, I just think that everyone would get a better rest in their own beds.  The girls seem to really enjoy pre-school.  However, Tori used a black crayon to draw a picture - which is not like her and the other day she said that her favourite colour is black, usually it is blue or purple?  I hope things are really okay, children don't know how to communicate what they're feeling and I want to make sure they are okay with everything going on, that Dave and I are handling it the 'right way' if there is such a thing?  Avery is coming along and learning new words on a daily basis.  It's funny she can actually sing the alphabet song along with a few others, yet she doesn't combine words to make a sentence?  Oh well, she's come a long way and is doing phenomenally!

Monday, September 29th, 2008 ~

     Wake up to a somber, rainy day with no appointments until the afternoon.  We decided to attend the local funeral home, but Dave and I didn't feel that it was the right place for Tucker.  So we then returned to the Gates of Heaven Cemetery to find the perfect resting place for Tucker.  We find one that is on a hill, facing a ravine, surrounded by trees on three sides that cannot be cut down due to naturalization, perfect... I can picture a healthy Tucker running into the trees and playing, unfortunately that is only a picture that I can imagine.  We drove to the Holy Sepulchre office and discussed purchasing a plot.  The woman brings the book and we drive back to the Gates of Heaven Cemetery to show her the place where we would like Tucker to be buried.  Well, when they say you can pick your own plot, there is fine print.  You can pick a plot in the areas they have open, as long as you belong to that religion, culture or nationality.  Apparently, the place that we had agreed on was 'reserved' for those who are Slovenian?  Okay, I thought a cemetery was a cemetery.  I'm not upset about it being sectioned for different cultures, etc.  Just that it was the perfect place for Tucker and we would not be able to give him that.  So, then we had to be told plots that were available and make our choice that way.  In essence, you don't pick your plot, they limit your choices, and then you choose.  Well, we now have a family plot for Tucker, and eventually Dave and I.  I don't know if it was purchasing the plot, but I really don't feel well.  My stomach hurts and my body aches.  I hope I'm not getting sick.

,Saturday, September 27th, 2008 ~

     Well, we planned to have a 'camp out' in our living room tonight.  We turned on the fireplace, I made Jiffy Pop popcorn, bought marshmallows, chocolate and graham crackers to make s'mores, than I reconsidered the mess in my carpet and decided against the s'mores.  We rented some movies:  Cars and Cinderella and had fun hanging out in our pyjama's on the floor.  We set up their indoor tent, with their pillows, blankets and flashlights and they played; after one and a half hours we decided that it would be better if they slept in their own beds and surprise, surprise they went without a fight.  Everyone stills has the sniffles but at least they are happy - most of the time.  It was such a great night, we decided to continue having a pyjama day on Sunday as well, yippee - less laundry!

Friday, September 26th, 2008 ~

     Tonight is game night!  The game is hockey and it is a pre-season game between the Toronto Maple Leafs and the Pittsburgh Penguins.  Our friend Sean was able to get us two tickets in the platinum section.  Dave is a die hard Maple Leaf fan, and well you guessed it, Tucker's namesake came from "Darcy Tucker".  Darcy Tucker no longer plays for the Maple Leafs, but just being able to see Dave's face with Tucker was amazing - I'm not sure if Dave or Tucker was more excited?  It was a wonderful evening and Tucker lasted through the entire game.  We were able to go down to a hallway where the dressing rooms were and took a few photos for our scrapbook... and some turned out spectacularly!  I can't believe how much popcorn Tucker ate.  Too bad the Leafs lost 5 to 4 :(  Regardless of the loss for the Leafs, it was a win for the Patterson Boys!  I'm just glad I was there to share the evening with the two most important men in my life.

Wednesday, September 24th, 2008 ~

     Well as you can expect the past few nights have been difficult, Tucker isn't able to breathe very well and his coughing is taking its toll on his sleep and mine!  Dave is working days, and he isn't feeling that great as we now all seem to have colds.  I sat in Tucker's room, trying to comfort him in the rocking chair, listening to his laboured breathing, I found myself making promises to God, to please let him be well enough to go to Disney World next month, then I remembered Christmas is just around the corner when we get back from vacation and again I make more promises to God to let him be with us through Christmas, through the winter without any hospital trips or worse, how many promises do I need to make to keep Tucker with us, is it even possible?  I still can't find the reason why this is happening, and if I hear that God only gives people what they can handle I'm probably going to lose it - who can handle losing a child?  I haven't called the funeral home back, I know I've got to prepare as I want everything perfect for Tucker - he deserves that and more.  But am I being a pessimist?  Everyone tells me to keep hope, and I pray daily that some one will discover a treatment or better yet - a cure... but the doctors confirmed Tuckers diagnosis 100%?  I really don't want anyone else to go through this, which makes my promise to Tucker even that much more important!

     On a positive note, this morning I received a phone call from the president of the Santa Clause Parade, I think that was her title?  I was so excited about the information she shared with me that I forgot where she was calling from.  Anyway, the parade donates $500.00 a year to a worthy cause, and this year, they've decided it will go to Tucker.  Fantastic, the word is getting out about this awful disease.  So, Santa Claus will be coming to our house next week to help us out with Tucker's plight.

     Oh, I forgot to mention, the total funds raised after Sunday's Family & Friend BBQ is.....  $5455.26!!  That's fantastic, thanks so much to everyone who donated items or helped to collect auction items, or took part in the day to make it a wonderful celebration!

Monday, September 22nd, 2008 ~

     Today was another day of appointment after appointment x4, needless to say, it was a busy one.  Tucker was fitted for his 'Rifton' Walker.  Which will be used in the house to help him get around.  Oh yeah, I forgot to tell you, Tucker is finally over 10kg's... on Thursday he weighed in at 10.28kgs - way to go little buddy!  Anyway, the walker will help him as his hands are contracting and making it difficult for him to crawl and the additional weight doesn't help as he doesn't seem to have very much upper body strength?  It was hard to hear the Occupational Therapist - Lowana, tell the vendor what additional items to affix to the walker that will help Tucker as he will soon not be able to hang on, so they are adding arm troughs to the walker.  Then he was fitted for a new stroller - or what I thought was a stroller.  In reality, it is a nicer way of saying 'wheelchair'.  A co-worker of Dave's was kind enough to donate one that had belonged to her daughter - that we thought we'd be able to use, but do to it's age, they don't have the tools to adjust it to fit Tucker's frame, so we had no choice but to order another one.  Having Tucker fitted for both assistive devices and having the fundraiser the day before put me in an emotional tailspin.  I keep talking about while Tucker is here and when Tucker will no longer with us... the truth of the matter that hit me like a 2 ton truck is that my son, my beautiful boy - Tucker, is dying.  I hadn't every thought about it like that.  But that is what is happening.  How do I cope?  Now Tucker has caught a bug of some sort, he has a terrible cough - sounds like a seal, can't sleep and is back to not eating.  Now that we know Tucker is medically fragile, I've become a paranoid parent and whisked him off to the doctors - who said we have to watch for this, that and the other thing, but nothing to worry about right now - he obviously doesn't have a child in Tucker's situation.  So, now we wait it out to see if Tucker can fight off this bug - please keep your fingers crossed.

Sunday, September 21st, 2008 ~

     I am sorry it's been almost a week since I've added to the blog, but life here is hectic at the best of times.  This week, I've tried to make sure that everything is in place for our first event which took place today.  The weather cooperated, children were getting their face painted by my cousins: Samantha and Robyn, while other children couldn't get enough of the 4 inflatable bouncers.  Then there were the adults, they seemed to enjoy outbidding other friends and family members on the Silent Auction items donated by Waterdown Businesses as well as family and friends.  I believe that everyone had a wonderful time ~ Tucker especially, he didn't even nap!  In fact, I barely saw my son, he was getting passed around to everyone and having the time of his life.  Tori had her moments of fun, followed by moments of tiredness as she didn't have a nap and then she'd get her second wind, followed by her third, fourth, and so on.  Avery on the other hand, slept thru a lot of the events as she had come down with a cold and was a little out of sorts - poor Avery!  Oh, I can't forget the BBQ, which was catered by Da Silva Catering in Brampton, the food was super - just as it had been when they catered our wedding just over 5 years ago!  I think Tucker's favourite part of the day was when all of the balloons were released into the sky, it was beautiful sight.  Thankfully, the day was captured by our photographer - Bob McWhinnie, I can't wait to see the footage.

     I have not yet calculated all of the funds raised for Tucker, as some people had not expected to bid so high on some of the items, so when the total is tallied, I will let everyone know what a huge success this day was, on so many different levels.  It was great to re-connect with people we haven't seen in such a long time.  I want to send out a special thanks to everyone who contributed:  Waterdown businesses that donated items for the Silent Auction; Catherine, Tara, Lynda and Tricia who collected those items; family and friends that collected or donated item, etc.

Sunday, September 14th, 2008 ~

     First of all, I hope everyone has read Tucker's article in the September 12th issue of the "Flamborough Review."  Diane Cornish did a wonderful, informative piece on Tucker and his Mitochondrial Disease (Leigh's Disease);  Brenda Jeffries did a fabulous job on capturing the 'perfect' photos of Tucker and the family.  So, if you haven't already - go to Media Releases to catch up with current events - just like when we were all in school.  The next thing I want to share, is difficult and very controversial.  I am very much a planner, well I used to be much better at it.  Now, I just seemed to be forgetful, very tired from not sleeping and I still feel overwhelmed dealing with Tucker's Mitochondrial Disease.  I keep hoping that some one will wake me up from this nightmare; even if that was done, I'm sure that there is another family out there that is living this nightmare just as we are, so I'll share in hopes that it will help me through this trying time in my life (so I'm told)?  Dave and I are not at the same place at the same time necessarily, not a bad thing, as everyone handles things differently.  Although I'm not wanting to accept the doctor's diagnosis for Tucker - I do know it's reality.  What I definitely do not want, is to be totally overcome with grief that I'm not able to make decisions for my son.  So, I want to make preparations in advance.  Don't get me wrong, there are days I do not want to think about the predicted future but the mother in me, the mother I want to be for Tucker, Avery and Tori wants to make sure that everything is absolutely perfect.  For that to happen, I need to be prepared, things need to be planned.  We need to see a social worker or Child Life Specialist to assist us with how, or when do we tell Tori and Avery - what is the best way, how does anyone even know what the best way is as they don't know my girls?  Another important component of decisions we have to make is the funeral.  I had no idea the options that we have to choose.  On Thursday, Dave and I stopped at Holy Sepulchre Cemetery, we hadn't even planned it we just somehow found ourselves driving by and we stopped in.  At first, I thought I'd be okay, then I saw the monuments displayed outside, "Why are we here?"  We figured that we'd already come this far, so we went in and spoke to one of the representatives.  We still have so much to decide (and agree on):  cremation, burial, plot, mausoleum, urn, etc.  My head was spinning.  Did we want to bury Tucker with other children (they actually have a separate children's area - I had no idea until Father Joe had mentioned it to me) or do we want to bury him in a plot, or with us?  Then depending if you want an upright monument or bronze/granite memorials that too can also be a deciding factor on where Tucker will be buried.  Dave and I have been married for just over 5 years, aren't we supposed to be in the 'honeymoon' phase, we most definitely should not be planning our 2 year old son's funeral.  While talking to the representative, my eyes filled up, but I was able to control the tears.  Then we went to look at the "Children's Section".  I couldn't handle seeing how many young, innocent lives were there.  They should be with their families, in school, at the playground - not in a cemetery!  Dave and I were both upset and left.  We then stopped at a funeral home as we've heard funerals are expensive but didn't really no just how expensive, and yet again we were surprised by all of the decisions we have to make at the funeral home in addition to the church and cemetery.  We have not made any firm plans, but at least we know or have an idea of what we need to consider.  All I know, is that I can't wait until I leave the hospital to make these very important decisions, I need to be prepared so that everything is perfect for my beautiful little boy - Tucker!  I don't know exactly what's going on with Tori and Avery, but something is up, they aren't being themselves and although they haven't said much - I think they're actions indicate that they know something is going on.  On a positive note, today, I took the children and me to get our photos done for our passports and completed the applications - look out Disney, here come the Patterson's!  Oh, before I forget, thanks so much for spreading the word.  I've received so many emails from friends of friends of friends... my promise to Tucker about spreading the word is starting to get around, there have been so many wonderful words shared and generous donations offered to the Silent Auction - "Thank You All!"

Wednesday, September 10th, 2008 ~

     Well, I'm happy to say that I got the website published last night, okay, Scott did that!  I just picked the 'boy's theme', 'the drawer titles' and all of the content...  as Scott explained, he made the house (got it working on the world wide web), I decorated the house, and what a designing team we make!  I hope you all enjoy this site and share it with everyone in your address book.

     On a completely different note, today Tori made her first observation out loud and completely unexpected.  Tori and Avery were sitting at the kitchen table, while I was getting their breakfast ready, Dave was seated on the floor with Tucker administering his Mito Cocktail through the G tube; when Tori looked at me and said, "Tucker is very sick."  I was taken off guard (but Dave and I had already discussed not lying to them, but was advised to wait until they brought it up), so I answered, "Yes, Tucker is very sick."  Tori continued, "He can't run outside and play with me, I want to go outside in the backyard and play with Daddy and Tucker."  And I said, "Okay."  That was the extent of the conversation, it was over as quickly as it had started.  It tugged at my heart strings and made me realize that she does have some understanding of what she hears and sees and hopefully Dave and I will be able to answer her questions and help her deal with any of her emotions that she or Avery are bound to have.  God give us strength!

Monday, September 8th, 2008 ~

     Today, Tori and Avery started their first day at Little Angels Daycare.  They had a blast - they would have forgotten to say good-bye to me when I dropped them off if I hadn't called them back, guess that's a good thing (and they were happy to see me at the end of the day).  The photographer from the Flamborough Review came to take pictures of Tucker and us for his upcoming debut to bring awareness to the community, watch for the article in the next paper.  Tomorrow should be fun, we're bringing the kids to Wee Piggies and Paws to do a life cast statue, I hope the kids will co-operate!  I also stopped by the church for the first time since Tucker's diagnosis and spoke with the Father Joe.  I told him what he has probably heard before, that how cruel can God be to have an innocent boy born with such an awful disease - is there really a God?  It doesn't make any sense to me, can someone answer me, Why?  He said it's okay to be upset and not to blame myself, but how can I not - Tucker inherited this from Dave and I, the odds were 1 in 500,000, we probably had better odds at winning the lottery.  I didn't say very much to him as I couldn't stop crying, so thankfully he just kept on speaking... I don't know what to do, I don't know how to plan a funeral - who plans a funeral for their 2 year old son?  I'd never even considered burial, cremation and I completely forgot about Mausoleums, now Dave and I just have to agree, what happens when we don't?  When I think about the funeral, if we do a burial, how many pallbearers will we need, the casket is going to be fairly small, how do we choose some one to ask - is it like asking someone to be your maid of honour or best man?  How do you choose a funeral home?  Why do I even need to know about all of this things?  I'll say it again, this is not right - when am I going to wake up from this terrifying nightmare?

Tuesday, September 2nd, 2008 ~

     Dave and I brought Tucker back to McMaster Children's Hospital for his Echo pre-op.  We still don't have the date for the actual Echo as he hasn't be able to shake the C Difficile he contracted while in hospital during his last admission.  We are on the second round of antibiotics, my poor boy, if this round doesn't help (and I don't think it is, but I'll wait out the full 20 days) he'll have to try another antibiotic.  Anyways, I thought we should drop in at the Neuromuscular Clinic to see if any of Tucker's test results came in.  After a brief wait, Dr. Tarnopolosky saw us.  Well, I'm now down to hoping for a cure and praying for a miracle as the Whole Blood test that was sent down to the United States is 100% conclusive, Tucker has Leigh's Disease - Complex IV, the following mutation was detected C.845-846del CT (hom), the del CT results in a stop codon at amino acid 290, which prevents the synthesis of the SURF1 protein.  [The clinical presentation of patients with SURF1 mutations occur between 6 and 12 months of age (Tucker started about 9 months), and are characterized by failure to thrive with delayed motor development, hypotonia (low muscle tone) accompanied with metabolic acidosis. (DiMauro et al, Annals of Neurology Vol 47 No.5 2000]  The tears begin to fall again as though I've heard it again for the first time.  I tell Dr. Tarnopolsky that we wouldn't be good parents if we didn't try to seek out any clinical trials, or additional information for treatments in hopes of extending Tucker's life (providing he has quality of life) and I ask him if it's possible for us to get a referral to travel to the United States or the United Kingdom and see if any other centres that have come up with any treatments, etc?  He advises that his clinic is the one that deals with the most Mitochondrial Diseases in Canada, he can put us in contact with the other doctors if we wish as they are all of his colleagues and friends.  I don't know if this reassures me that we do have the best doctor in Canada looking after Tucker, or if it saddens me that we may not be able to find a cure or even a treatment in his lifetime?  He then discusses a couple of other options and requests our permission for him to take the next step to see if they in fact may be options.  The one positive note from this meeting is that we found out that Tucker is not in pain from this Disease, and he can assure us of this.  I ask if the tests give us an approximate time span that we will have with Tucker and are told it's just the one to three years from onset - one year is over and now each day is a gift! I ask Dr. Tarnopolsky want to make sure that I understand what signs or symptoms we need to watch for or what will we be involved when Tucker's condition changes, Dr. Tarnopolsky advises that Tucker over time may get a cold, bug, etc., that will weaken his immune system that may lead him to get some type of respiratory infection and Tucker may need to go on a ventilator.  This is when he mentions that Dave and I will then have some difficult decisions to make and we discuss our DNR (Do Not Resuscitate) options.  I can not believe this, this can't be happening, I shouldn't be discussing DNR options for my two year old son, I should be getting excited about Halloween, then Christmas, planning his 3rd birthday, and so on - the tears continue to fall, this is so unfair!  I am doubting that a God exists as how could any God take an innocent 2 year old child, what is the purpose of this??  I leave the office overwhelmed with grief.  Please do not ask me what our decision is regarding the DNR, I truly feel it is a personal opinion and either way there will be someone who doesn't agree, just be thankful that you are not in our position having to make the most difficult decision of your child's life; not to mention I may change my mind when the time comes?  Well at least today ended on a somewhat positive note... I confirmed our family vacation to Orlando.  We are leaving on October 23rd, and returning November 1st.  Apparently Disney does a superb parade with fireworks and all the trimmings for Halloween - the kids should have a blast!  We decided not to stay on the resort just because we need more space for the kids, a kitchen for when Tucker isn't eating and laundry facilities so I don't have to pack 5 weeks of clothes for the family.  A place called, "Romancing the Mouse" was recommended by a friend and the way she raves about it, I may not want to come home!  She said it's only about 1.5 miles away from Disney, good enough for me, I hope.

     The next few days were a blur of emotions:  anger, sadness, uncertainty and disbelief to name a few.  I am thankful that Tucker is home from the hospital and happy that all of us are home together, anxiety hits when I look at his room that somewhat resembles a hospital room with the feeding pump, pole, syringes, tubes, trach gauze pads, various types of tapes, medications and of course who could forget the numerous cans of Pediasure?  This is our little boy's room, the one we just painted blue and decorated with firefighter bedding, fire trucks on shelves, a fire pole to hang clothes and a fire truck step stool, with dreams of him wanting to become a firefighter -just like Daddy, this is not supposed to be his second hospital room.  We've been married for just over 5 years, have 3 beautiful children, we are supposed to be making happy plans for each of them.  Tori is going to be entering junior kindergarten next year, she loves to run outside and do somersaults throughout the house - definitely a gymnast in the family; Avery looks up to her big sister and is quick to follow anything her sister does, only to be stopped by the sound of music, we decide that we should put her in dance this fall; then there's our little Tucker who adores his sisters and is always looked after lovingly by both sisters, if he drops his soother - Avery is always there to get it for him and it often turns into a game with Tucker throwing it and Avery 'fetching' it not even caring that she is doing it repeatedly, and Tori is the first to run over to see him if he makes the slightest noise of discomfort, rubbing his head or back saying, "It's okay, Tucker".  We are not supposed to be thinking of funeral arrangements for our beautiful 2 year old boy - that's just so wrong, so unfair!  The tears come and go as I hear a song on the radio, or see a neighbour and his 4 year old son playing catch in the street - I think, "We will never have that".  Then when I think of all things I'm not going to be able to do with my only son:  I may never see him take his first steps, I won't be able to walk him and Avery to their first day of school, I won't be able to watch him score his first goal in soccer, hockey or a homerun in baseball (it doesn't matter what sport), I won't be able to watch him dig for worms to torment his sisters, I won't see the joy in his eyes when he catches his first fish, I won't be able to teach him how to drive a car, I won't get to see him all excited, yet panicked preparing go on his first date, I won't be able to see him graduate from high school and go onto university, I won't hear him tell me that he has met the 'right' girl and is getting married - I will never have my mother/son dance.  I know I sound selfish, and there's so much more to him than what I'm going to miss out on but they are the simple joys that parents look forward to, watching their child created out of love grow up and into their own special person - I will never know what would've or could've been.  Instead I have a beautiful, brave little boy, who has spent more than 5 weeks in hospital in the last 8 months alone, numerous pokes for blood tests, a barium swallow, 24 ph probe, x-rays, ultrasounds, endoscopy, NG tube inserted while waiting for the G tube to be surgically inserted, MRI, muscle and skin biopsy's, EEG, etc.  Then just one month past his second birthday, I'm told that my very special little boy has one to three years to be with us and I'm supposed to pretend like everything is okay - well it's not!  How does one go about their day knowing that my little boy will be taken from me, especially when I have three children under 4 years of age.  But for the sake of Tori, Avery, Tucker and our family, I have to be strong for them and give them the best of me, but it is so difficult.  So, I make plans for a wonderful family vacation - we are going to Disney!  Some people don't understand why Disney, the expense and the kids are likely not to remember it, well all I have to say is if you've ever seen Tucker when his sisters are around - he absolutely adores them, he's happy when they are happy, Disney is a kids place and I want to take an abundance of photos with all of us for the girls (and us) to remember - I don't want Tori, Avery or us only remembering all of the hospital visits, the tubes, the home care, or the numerous doctor appointments.  So, I choose to try to make a lifetime of memories in whatever little time we have with Tucker.  I won't kid you day to day activities are difficult, I can be happy one minute and suddenly I am overcome with grief and it takes a while to put on that 'happy' face that I need to have for the children.

Saturday, August 16th, 2008 ~

     I decide to share our pain with our extended families, friends and co-workers by sending a mass email so that people can pray for Tucker, I myself have three prayers.  One, the doctors are wrong; two, a cure for Leigh's Disease is found; and three, a miracle happens!  Dave and I decide to have a party to Celebrate Tucker and let our family and friends see Tucker while he is at his best and raise awareness for Leigh's Disease.  After speaking with some friends, it turns into a fundraiser for a variety of things:  costs for Tucker's care and equipment, research and awareness.  Our friends, family and co-workers have really pulled together to support our family.  It is really quite amazing.  I know I never thought this would happen to us, I personally didn't know of any families who had gone through anything similar (until now), so I didn't know what to expect.  It's obvious that I didn't have a clue as the place for our event only holds 144, and with all of the people who have called to offer their kind words, support, donations, I should have booked the ACC, okay - maybe that's a little over the top; but seriously, I am so touched by all of the emails, phone calls and cards... no one is taught the 'perfect' thing to say in this situation, yet all the words have meant the world to me because they are heartfelt! Our friends and families have jumped in to organize a Silent Auction, 50/50 draw, obtained an inflatable bouncer, donated their time to set up this website, offered to do the face painting and have even made arrangements to cover any of Dave's shifts if Tucker has a difficult night, or is re-admitted to hospital - it really is admirable!!  Thank you, all of you!

     On Friday, August 15th, 2008, Dave returned to work knowing that Tucker was being released from the hospital later that day.  I was so excited Tucker was coming home, that I cleaned all of his toys and packed the van the night before in order to get out of there as soon as we were given the papers.   The day seemed to drag on, we kept waiting and waiting for the doctors to give us the okay (trust me, I kept bugging the nurses to find the doctors).  Just after lunch, one of the residents appeared, gowned and gloved and asked if Dave and I were able to attend another doctor's conference?  The knot in my stomach grew tighter.  I explained that Dave was at work, she asked if he could get there for 2pm?  While she waited in Tucker's room, I called Dave and explained that he needed to come to the hospital for our second doctors conference.  Dave asked, "Why could the doctors not give me the information to relay to him?"  and the doctor said, "It's something that both of you need to hear, and that Tucker's pediatrician was also here and would not be available later"  I said, "That doesn't sound so good."  She added, "You'll both want to hear the words and be able to ask the doctors any questions you may have.", Dave said he'd be there.  Once the doctor left, I quickly called Dave back and told him that I was scared, he tried to calm me down by saying that everything was going to be okay, they probably just wanted to go over Tucker's care, what would be happening next, and make sure that we both understood how to use the feeding pump that had arrived the day before.  It was sweet for him to try to comfort me, but my heart knew that this wasn't going to be okay.  Dave arrived just as I had put Tucker down for his afternoon nap, we both kissed Tucker and proceeded to the area where we were to meet for the doctors conference.  While waiting, Tucker's pediatrician - Dr. MacNay arrived, we asked him if he had any information and he told us he was on vacation and hadn't had the opportunity to speak to Dr. Tarnopolsky - Tucker's Neuromuscular Doctor (there it was, why would they call Tucker's pediatrician while he was on vacation to say everything was okay, I felt sick).  Dave and I were brought into the conference room and Dr. MacNay went out to greet Dr. Tarnopolsky, Dr. Ernst (the on call pediatrician) and the other residents who had been involved with Tucker's care over the past three weeks.  We could see Tucker's doctors talking amongst each other, I could see the look on their faces, their body language - this wasn't going to be good news.  The team entered the room, there were 6 doctors, a social worker and us.  Dr. Tarnopolsky proceeded to re-explain about Mitochondria, where they are in the body, what function they perform, etc., some of which he had described at our previous doctor's conference and some of it I had read from the book he had provided to us.  My mind and my heart were racing, I know I wasn't taking in all of what he was saying, then he started talking about the Surf 1 mutation, my eyes started to swell and the tears began falling, Dr. Tarnopolsky then told us the most devastating news no parent would ever want to hear.  He informed us that our brave little hero had a Mitochondrial Disease known as "Leigh's Syndrome - Complex IV".  Leigh's Syndrome is one of the more severe forms Mitochondrial Disease which often has degradation of motor skills and eventually death within one to three years of onset...  my world falls apart and I cry uncontrollably, why is this happening to Tucker, to our beautiful family?  Dr. Tarnopolsky says that having the G tube put in Tucker was one of the best things we could have done for him, as it helps us supplement his feeds and aids us in giving him the 'Mitochondrial Cocktail' (which apparently tastes terrible); the Mito Cocktail which consists of:  Riboflavin, Vitamin E, Co Q10 Enzyme, Creatine Powder and Alpha Lipoic Acid will hopefully help to give Tucker some energy.  All the doctor's except Dr. MacNay leave us to grieve, Dr. MacNay asked if he could sit with us for a while, gave us his sympathies and explained that Tucker would be put on a 'patient short list' and that we would be given the 'back line' to the on call pediatrician at McMaster's Children Hospital for any emergency should one arise.  Dave and I sit in the room, crying, in shock and in utter disbelief.  We return to Tucker's ward and see the faces on the nurses we had grown so fond of over the weeks - it's obvious that they know too.  We go into Tucker's room, he is awake and sees his Daddy, his eyes light up as though I'd flick on the light switch and he beams that big, beautiful smile.  My knees buckle under me and I am overwhelmed with emotion.  Dave picks up Tucker and brings him over to comfort me, Tucker doesn't understand, but continues smiling and extends his hands to give me a hug - for a brief moment I smile, then I hug him and Dave tightly hoping this was just a very bad dream.  It's not.  We say our goodbyes to the wonderful nursing staff of ward 3B, Tucker is discharged and we take him home to see his sisters.  He is ecstatic to see them just as they are as thrilled to have him back at home.  Dave and I tell our parents and sisters the devastating news, no one wants to believe it, yet we know it's true.  We shut off the ringers on the phone, shut out the world and cry.  This by far is the worst day of my life, yet I know because of this horrible disease another is yet to come.

      On August 6th, Tucker was again sedated to have a G tube inserted to supplement his feeds and help out with the administration of medication.   It is tough to watch the anesthetist sedate Tucker for yet a third time, you can see the hear the fear in his cries and the plea in his eyes asking us to make them stop, but yet we don't as we're the parents and are supposed to know that we have his best interest in mind.  How do you explain that to a two year old?  You promise to keep them safe and that no harm will come to them - do you know how many times they've tried to take blood work from him and his veins collapse, it is very painful as I have personally experienced it.  But I allow them to continue as I know this has to be done because I need to know what is wrong with Tucker so that I can help him get better.

     On July 26th, 2008, Tucker was admitted to McMaster Children's Hospital for failing to thrive and regression of motor skills.  On Tuesday, July 29th, he was seen by an Ophthalmologist at McMaster.  During this appointment, it was discovered that Tucker's optical nerves were white instead of the usual 'pink'.  I was informed that there were only three causes for this:  birth defect, mass or tumour.  My world started to crumble.  Tucker was immediately scheduled the next day for an MRI of his eye orbital's and brain, he would also have his muscle biopsy during this time.  At about 12:15pm, Tucker was sedated and brought in for his MRI, muscle and skin biopsy's, Dave and I prayed.  After the procedure, we were told by his doctors that there were noted abnormalities in his brain:  basal ganglia, cerebellum, medulla and syrinx.  All of this was pointing in the direction of a Mitochondrial Disease; however, we needed to wait for the results of the muscle biopsy for confirmation.

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