Thursday, December 31, 2015

Countdown

Matt's wish trip is 30 days away!!!!  Matt wished to go to Disney, Universal Studios and LegoLand!  We are so excited!!!!!  We leave on January 30!!!!!   I made this really cute countdown wheel that we started today!  On the back of every clothespin there is a trip related activity!  
Ignore the medical supplies... sometimes I feel like they are taking over!  They are all so important but take up so much room! 
Today's activity: Watch youtube videos of Legoland!  
Matt loved watching the videos!  He was so excited looking at the rides and thinking about which ones he wanted to do and which ones he didn't.  I am not a roller coaster fan at all.   But I have determined any ride he wants to do this is his trip I will do anything even if I am scared.  
The problem is some days he has very little control of his core and honestly I don't even know what bigger rides he will be able to do with out hurting himself.  At Seaworld he has been pretty good at regulating himself and not doing harder rides even though he loves them when he has little control of his core.  
On a side note with his core, I asked his therapist the other day if we could add swinging to his list of goals.  He said it is something we could work up to.  :-(  It makes me sad to know he doesn't have the core strength to do something as simple as swinging.  

30 days and counting!!!!!!!!! 

For anyone that missed my 2015 update please read the previous post if you are interested. 

2015

2015 has been an interesting year.

Family Life 

My husband and I are officially separated.  Heading for divorce.   This is of course a huge change but a good decision for our family.

I started working again this year, another huge change.  I started working at wal-mart thinking the benefits would be good.   (if I have to miss work it wouldn't be the end of the world and I was hoping to be covered by FMLA.)

After a few months I realized what I really wanted to do and I started a career as a balloon twister.  I started with a small company but with in a month I realized going out on my own was a much better idea.  I am loving it and making enough to support my small family.

Matt's health 

Matt has continued to have GI issues.  Now on top of gastroparesis he has bacterial overgrowth.  We are able to stay out of the hospital for the most part but heavily control his diet at him.

We started the year on vivonex formula but he is now on Neocate Splash.  So far we like the change.  He isn't tolerating it better but he is growing and it is an RTF formula so it is much easier to use.

His feeding schedule is bolus feeds in the day (4-6 is goal and we have never made 6) of 3 oz of formula mixed with 1 oz of water followed by a 1 oz flush.  Overnight he is hooked up to Farrell bag and pump and we are running 16 oz of formula with 8 oz of water at 55 mls an hour.  He is growing that is a delicate balance and if something goes wrong he gets dehydrated fast!

DEHYDRATION! In years past Matthew never became dehydrated.  Before getting his feeding tube not peeing in over 24 hours did not mean dehydration.  Now hydration is a top concern.  If something goes wrong with a night feed he wakes up dehydrated with low blood sugar and we head towards an admit.

Phemonia - Matt had phemonia for the 2nd time this year.  This is now a concern we have to watch out for.

Matt has required less oxygen this year but other sleep issues are becoming bigger concerns.   He is hypoventilating to the point he is requiring a bipap.  While waiting for the titration study for bipap he started having more apnea episodes.  He started sleeping 13-15 hours a night still waking up tired.

Matt finally started bipap about two weeks ago.  We are seeing an improvement but some days it is a very hard adjustment.  He was starting to sleep less but he is back to sleeping more and feeling tired.

Matt has been falling more and having a lot of leg pain.  Some days he wakes up says his feet and legs hurt and he can't balance.  Some days I fear we are nearing the end of him walking but praise God everyday  he is still walking and moving!  He will be getting braces again this time he is getting full AFOs.

2016 

After almost two years from refferal date Matt's make a wish trip is getting close.  I am hoping to start posting everyday as we countdown the trip.  I really want to get back to documenting Matt's life.  This trip is something I really want to have a full recount of.

Happy New Year to anyone who is reading this.