Tuesday, November 20, 2012

Mito, Maybe?

I was very convinced we were not dealing with mito as you can tell by my last post.  Today we went to Matt's pedi and he brought up the muscle biopsy.  He said that a report he read said that the muscle tissue was conclusive to mitochondrial disease.  I told him I hadn't seen the metabolic I just know that his blood work came back inconclusive.  We talked for a few more minutes about it when he said there was another report that said that the muscle matter was inconclusive.  He was hoping I had answers.  I told him I see the metabolic doctor the day after Christmas.  It came as such a shock I didn't even think to ask for a copy of the test results.

Could it really be mito?  Could we finally have answers?  Am I ready for answers?  All this went through my head.  I wanted to block out any of Matt's illness until after Christmas, it seemed impossible this morning, but as the day has gone on  I am pushing the questions father away.

This morning my first thoughts were, maybe I don't want answers.  All I could think about was all the horrible stories I have read, all the people I have met who lost their babies to this horrible disease   I thought about how much has been taken away from so many.   I have come to grips with the fact that something is not right with Matt.  I understand there is a good chance it is life shortening.  I know that knowing what we are fighting is better than not knowing.  Still in those first few moments all I could think was "I don't want to know, I don't want it to be this".

I don't know where this leaves us on this journey.  Back to waiting.

Saturday, November 17, 2012

Regression?

     This year I am having a hard time calling what is happening to Matt regression.  For first time it has become clear that what Matt goes through is not necessarily regression but muscle weakness.  When he was younger it was harder to see that he wasn't losing skills but just can't access the skills that he has learned.

     I have written this before but it is so hard to see him go through this.  Yesterday he walked up to me with so much to say but I couldn't understand a single word.  It is hard to see him struggle.  This morning he fell down the stairs.  It all seems so unfair.

     I know that we are lucky, I know that he could be so much worse.  I still have a little boy that can walk, express himself, eat, and enjoy so many things.  Still, compared to typical children I feel like he has lost so much.

     I don't know if Matt has mito, there are some areas that mito makes perfect sense for Matt, but there are key factors that mito doesn't make sense.  Matt doesn't get easily dehydrated and sickness doesn't hit him hard.  I am grateful for both of those things, but it leaves me wondering  if it isn't mito, what is it?  We know it is a neuro-muscular metabolic disorder.   Most of the those fall under the muscular dystrophy umbrella, I am starting to think maybe I should be looking more into those resources?  Maybe a doctor who studies them? Matt has been tested for MD and SMA, he doesn't have either.... but I know MD cast a very big shadow and cover many things.

     Matt is in a weird place, usually when he regresses he calms down, he doesn't have the energy to be aggressive or hyper active.  This year he is very aggressive, much more than has become his norm.  I am getting kicked, bit, scratched, and hit almost daily. He is very hyper, just trying to get him to do Thanksgiving crafts is a never ending battle. Easy crafts turn into two day projects.  At the same time, he is tired more. He is back to sleeping over twelve hours a day, when he was sleeping ten.  Most days he either needs a nap which I have to give meds for him to take a nap or he comes to me and just says "I'm tired" and spends a restless hour or two in bed.
 
     I am trying not to let whatever is going on with Matt get me down.  The holidays are so short lived and I don't want to spend them being sad.  I have plenty of time after the new year for that.

    On a side note, most of my Christmas shopping is not only done but I have most of the packages wrapped.  Still I am very anxious for all that is left undone.  I woke up this morning almost in a panic attack having to write a list of everything left to do.  I know that this next month will just fly by and I don't want to forget or not plan for anything.  When I see commercials on TV that say things like "Start your Christmas shopping here" or "Don't wait till the last minute start today"  I am not only dumbfounded people haven't  started preparing yet, but I feel major anxiety.  I know, I know I have a problem. When I was younger I prided myself on being a last minute kind of girl.  I would usually use my last paycheck before Christmas and do all of my holiday shopping.  I loved the last minute hussle and bussle. Now that I am the mom, I am the one in charge of my families holiday bliss, I can't even imagine that.  I start planning months in advance.  I take Christmas in July seriously and starts shopping.

     What adds to the anxiety is Matt's birthday is so close to Christmas.  Not only am I buying and preparing for Christmas I also have to prepare to give Matt the best birthday he could imagine.  This year is Chuck E. Cheese, which is nice because they do most of the work, but it cost more than I would like to spend.  This last year the price has gone up considerably.  I love to spend money on Matt, I just wish I could have a little space between the two.

Sunday, November 11, 2012

Monumental Moment...

A few weeks ago during a cold front I had the door open, and Matt started yelling out to some neighborhood kids playing outside.  They came over to the door and I went outside with Matt and they got to play a little bit.  Since then everyday that has been cooler I have let Matt go outside and play with him.  Unfortunately,  most days around here are not cool enough for Matt to get to play outside.  We actually haven't been outside since the day before Halloween when we carved our pumpkin outside but it became too hot so we had to come inside.
I few minutes ago there was a ring on our door, it was Matt's friends asking if he could play!!!  We were about to go to the store but I decided it could wait.  I gave the little girl the trick or treat bags I made them and the mom came over to ask about it.  She doesn't speak a lot of english, but I told her I made it.  Then I went over to her house and explained that my son has special needs and he can't be out in the heat much and asked if the kids could come inside.  Matt has a ridculoas amount of toys and the kids could have so much fun playing.  She said it was okay.  So now all three kids are upstairs playing.  Probably making a mess of his room, but who cares it can be cleaned, and Matt is so very happy to have them there.  The bad part is that since Matt's bed isn't being used his toy bookshelf has been moved upstairs for the winter so we have access to our fireplace and his massive foam bag (bean bag type thing) and spare wheel chair are sitting on his bed.  He has a bed in our room he sleeps in.

I had to post this.  What a great day!!!!

Tuesday, November 6, 2012

Regression, school, and Mito update...

Matt has been regressing again, it is mainly language.  I haven't felt well lately so it is frustrating to me and him.  It is hard not to understand him, it is so frustrating for both of us.

Yesterday, we had his eval at school at the preschool assessment center.  It is the first real step to school.  I have put a lot of time into teaching Matt and because of that academically he is not behind.  They are already talking about 504ing him, which I do not find acceptable.  I know I will be asking for a NPT, I know I will have to fight for it, but I don't want him falling behind in school for his needs to be met.

I also got a call yesterday from our metabolic doctors office.  When I saw the number on my phone I didn't want to answer it.  I knew what it meant before I even said hello.  Some of the blood work results have come back.  (Not the muscle biopsy) and they are negative for any specific mito.  As we all know, it doesn't rule out mito, but it also doesn't point to it.  It is so frustrating to be here.  I pray the muscle biopsy gives answers.  At times like this I really just start to wonder, and I just crazy?