November 20, 2005
November 20, 2005 | Updates
Well, we’re half way through Samuel’s hyperbaric treatments. I was hoping to see more improvements in his tone (posturing) by now, but it can take quite a few treatments before those kinds of changes are seen - most often many more than the 40 that we will get in this first set of treatments. I must say, though, I will be happy when this first set is finished and we can take a break at home for a few months before we do more.Samuel is still doing well. Things have at least settled a little. We aren’t changing his medications much lately since I hate to mess with is seizure medication during hyperbarics because there is a risk of seizures during hyperbarics. And I still have not heard from our doctor on ideas of how to get him off his tranxene. Otherwise, he is just taking a daily vitamin and then a daily suppository with a little milk of magnesium to keep him from getting constipated. We still use clonadine and ambien now and again to help Samuel sleep through the night, but are trying as much as possible not to use them.
Speaking of sleeping, Samuel hasn’t been sleeping very well for the past week. He falls asleep fine on his own at nights, but he only sleeps about 6 hours and then he is up on and off about every hour crying and upset. I think he is mostly upset that he is in his crib and bored. But I don’t want to get him in the habit of being up and doing things in the middle of the night. I’m hoping it passes soon, though, because it is wearing me out :-).
Samuel is finally working on eating things by mouth. He has gotten MUCH better at allowing things in his mouth, though he is very picky what he will and will not allow. So far, he loves bananas, apple sauce and chocolate chip cookies. I put small pieces in his mouth and he is starting to move them to the back of his throat and then swallow them. It’s a slow process, but he’s doing it! Today, I put about 4 bites of banana in his mouth and watched him work with them and then swallow them. I didn’t get any of it back!
Samuel has also been arching his back more than the past few weeks, but it doesn’t seem to be that he is posturing more or that his muscles are tightening. It seems to me that he is trying to roll over - especially because when I roll him on his stomach, he calms down. He is getting much better head control when he is sitting on our laps and he is even gaining some head control when he is laying on his stomach. I am trying to teach him to use his hands and arms to push himself up when he is on his stomach, but I don’t think he gets it quite yet. Hopefully, that will come.
I came home early this week for Ben’s birthday and it’s been nice being home with the boys and Tom. It will be good to have this week of Thanksgiving and spend a few extra days with them. It’s really hard to be away from them anymore.
Well, that’s about it for this week. I know that everyone that sees Samuel says they can see a lot of change in him. I think it’s much harder for me to see it because I am with him every day. But we are all hanging in there and if I could say anything about Samuel, it’s that he’s determined, got a mind of his own, and has unlimited energy. I know he can do this. It’s just going to be A LOT of work. I sure wish I could do it for him! But I am grateful everyday that I can look at him and think what a cute boy he is and plant kisses on his little cheeks. Hopefully, there will be a day when I have to chase him to get those kisses!
Keep up the prayers and faith! We need them now more than ever!
Love,
Teresa, Tom, Samuel & Boys
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