SMA Awareness Day #4

Today's shirt is for Garrison.  Garrison was our little buddy who touched many lives in his short time on earth. One year ago today his mom had to do the unthinkable and take him off life support after he coded.  I don't want for my posts to be only full of sadness.  This one will be because today should also be another little boy's 14th birthday. Our buddy, Daniel, passed away in 2012 from complications of SMA. He is missed by so many people. I'm sure he is in Heaven celebrating today with his mom,Connie, who is also in Heaven.  Our Collie is surely with them as well but Daniel leaves many family and friends feeling sad and having their hearts ache since he is no longer with us on earth.  

Garrison loved all sorts of rescue vehicles. Thus the firetruck on this shirt.  I know that there was a parade of rescue vehicles that drove by for his celebration of life.💙

This is a pic of Casey, Colin and Daniel's hands. What more to say? They were the best buddies.  One of my favorite memories is when Daniel's dad gave Casey $20 for 'babysitting' Daniel. Casey loved that he was a mentor and big buddy to Daniel. Colin loved showing Daniel all the fun board games he had.Those were good times. 

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Highlights of day.  Not much.  Casey was a super duper grump.  He also had some new 'hot' patches on one leg. Many kids with SMA have ANS storms or autonomic dysfunction or dysautomia. There's not a lot to do for it except treat symptoms and ride out the 'storm'. We're getting some affects from a tropical storm, so I'm now wondering if the pressure changes are bugging him somehow. I know that I woke with a headache and it hasn't left all day. Nothing could dissuade him from vocalizing like a crazy man. Got him down from chair to table. Helped a little but it's so hard to tell what's bugging him.  He has his device but usually only gves us one word answers to what is wrong.  It doesn't usually help us solve the problem.  He got a little more calm during reading group.  He likes when Karen reads about The Beatles. Then he had some time to chill out with YouTube and watched some walk throughs of Wizard 101.  Red Sox now.  Maybe if the Red Sox win everything will magically be better????