AFOs

These are what Seth has to wear at night-the goal being to keep his ankles in as neutral position as possible while he's sleeping, to help prevent shortening of the heel cords. He picked out the snazzy flag pattern. :) We just got them today, so we'll see how it goes. Seth is a bit....resistant to change sometimes. And I'm sure they'll be hot, he has to wear socks with them, but I think he is used to being hot when he sleeps since he likes to wrap a fleece blanket around his neck and then have his comforter up to his nose, even in the summer. When I check on him before I go to bed he's always all sweaty, but that's how he likes it, I guess!

He's been on the deflazacort for over a week now. So far the only difference we've noticed is that he seems a little more easily frustrated, but he's always been like that, so maybe we're just over analyzing him. I just hate looking at him and thinking this is as tall as he's going to be for awhile (since it stunts their growth). I don't care how tall he is, but it's going to be pretty clear that he's "different" pretty soon as all the other kids grow all around him.

Speaking of being different - he and I had a conversation the other night. I was saying that there would probably be some things he wouldn't be able to do in gym class this year because of his muscles and he said, "I wish I didn't have it." I can't remember how it got to this, but he said something about his MD being a secret, and I said he didn't HAVE to tell people, but it definitely isn't a secret-it's nothing he should be ashamed of because it's not his fault. He asked me whose fault it was, and I said nobody's, and he said, "Yeah...God just made me this way." :( I just told him that he just needed to remember that even when things are hard he just has to remember God is taking care of him. And he said, "I know that!"

Also-we managed to get our genetics and next neuro appointments nailed down - September 16. The blood work is *supposed* to be done by then.