Adventures in Serial Casting . . . Week Three

We are down to one cast. Yea! After much discussion the therapist decided that as long as Jon wears his AFO and promised to stand up for a few minutes several times a day she would only cast the right foot. He is trying, I think he is starting to understand the benefits. She really laid out his options and his other therapist said she would not hesitate to send him back for casting again if he started to tighten up again. The mention of surgery really got his attention. We go back next Wednesday and if she sees that he did not maintain the range we attained she will cast that foot again.

It's hard when they are older; you really have less control over what they do. I really think Jon needs to see that doing the positive things he needs to do is taking control of his life. He seems to think that being stubborn and refusing to do what is asked of him is taking control. I can't even imagine how hard this all is for him, he's a bright young man and he has figured out where this disease is heading. I know that there are days when he just doesn't see the point of even trying. Since he does independent study for school, he is so isolated. He hardly ever leaves his room. He has crawled into this shell and I don't know how to get him out. He is such a great kid, he's bright, he has such a great sense of humor and a lot of compassion. We need to find something besides X-box and Stargate for him to be interested in, something that gets him out and interacting with real people. He doesn't want to go to church anymore, he says it is just too hard and he doesn't want to use his wheelchair because he thinks people will think he is a 'freak' (his words). When he does go, everyone is just happy to see him. Sorry started to ramble here.

Have a blessed day,
Susan

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Comment by Jill Keenan on July 2, 2008 at 7:56pm
Glad to hear that all is well on the "casting" front but sad to read that Jon is cutting himself off. It must be so hard on him and hard on you to watch his retreat. And you are right, when they are older, you just have so little control. When they are little, they almost believe everything you say and somehow you can talk them into doing things they don't want to do. When they are older, I guess they "see through" our tactics, and also just have a mind and will of their own. Having dmd must really do a number on them. I'll be praying that he will find a way out of his shell. I am always here if you ever want to "ramble"--I don't mind a good ramble at all!! I'm all ears if you need! God bless you all! Jill

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