Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, February 06, 2011

When to wear the brace

The Dr. from Shriner's originally told us Axel only needed to wear his brace when he's awake. Except that he doesn't know how Axel sleeps!

Axel often sleeps with his head hanging off the bed, and just as often falls out of bed. Sometimes I find him standing with his feet on the floor and his head on the bed, like he's been walking around, or fell off and didn't quite make it back before falling asleep again. When he does stay on the bed, he almost always sleeps with his neck hyper-extended, something we now know is very dangerous for him! Funny how what was fine one day totally freaks us out the next.

Dean and I made the decision that Axel would have to wear his brace to bed too. We also put his mattress on the floor. Ok, really his bed broke about a week ago and we hadn't bought a new frame yet, so we're just leaving the mattress on the floor. LOL So, if he does fall off the bed, he's only going a few inches with his neck protected.

Or is it?

This is Axel getting ready to hang his head off the bed. About where the bottom edge of the picture is, that's where the edge of the bed is. One more scoot and he'll be in his favorite position.

Fifteen minutes after taking the first picture, I found him in this position. Notice even with the brace on he's trying to hyper-extend his neck.

This morning when I woke him up for church he was doing his head bob thing (kind of like banging but he ONLY does it while asleep) on his pillow with the side of his head. While wearing the brace. No clue how he managed THAT!

1 comment:

eliz said...

What a nut!! He's so funny! Poor guy, if only he knew how dangerous all of this was. Even sleeping!! I know I'd be having heart failure watching him! Poor little guy, he is just so precious! We are praying.