February 27, 2007
February 27, 2007 | Updates
Sorry, time keeps getting away from me. I should post more often so my posts are shorter! I tend to ramble. Anyway, Samuel’s pump refill went well. We are right at 400 micrograms per day with this reduction. Another 5 months and we should be down to zero - depending on how he tolerates the decreases. He’s had a pretty hard time with this last one. It’s been strange because he is suddenly tolerant of so many exercises that he just wouldn’t allow before the decrease, yet you can tell he has higher tone when he’s upset. I keep telling myself that within a month, the tone will pass. It always goes this way when we reduce his pump. We just don’t enjoy it. It even goes so far as to give him a bit of a fever and cause him to start spitting up all the time again. But it always passes within a few weeks, so we just need to hang in there.We got some bad news this week. Our physical therapist is moving to Oregon. Bad news for us, not for him. He’ll be working in a children’s hospital there. He’ll love that. But we went through 4 physical therapists before I found one I liked, so it’s hard to see him go. However, now that we are in outpatient therapy, we have more options. So we can now go to a pediatric therapy place that our insurance didn’t allow when Samuel was homebound. So, it should all work out. Thank heavens! I don’t know what we’d do if we couldn’t go there because our PT is about the only therapist we have that I feel good about paying at this point :)! But this new place should be good and they can offer us PT, OT and speech at one place.
We also had another meeting with Samuel’s school to readdress his goals for this year. Apparently, he passed them off again. Go, Samuel! This is the second time this year that he has passed off goals that were supposed to last him the entire year. And I LOVE that his teachers are proactive enough to ensure new goals are set in place for him. They take such a strain off me because I don’t have to worry about what he is accomplishing at school and I can just worry about what we are doing at home.
They also found a communication device that they want to try with Samuel. I’m really hoping it will work for him. How great would it be for him and us if he could communicate with us?! It’s basically a board with pictures and a switch he can hit to choose the pictures he wants and once he chooses one, the board talks. It can say anything from, “Hi” to “I want to go to Disneyland!” It will be neat to see what he can do with it.
The only thing that really surprised me was the vision assessment that they did with Samuel. They indicated that his vision was at a rating of about 4 on a scale of 1 to 7. I think it’s better than that. But it doesn’t really matter because it just means that he will get vision therapy, which certainly can’t hurt. There were a few things they said that made sense - like he doesn’t seem to pay attention to things that are farther than 5 feet away. I don’t think that he can’t see them, though. I just think it takes more to get his attention because I can stand at the top of 2 flights of stairs in our house and smile at him and he will smile back. They also said he pays attention to higher contrast pictures more than others. I’ve noticed that too. He loves the color red. And they said he isn’t interested in looking at himself in a mirror. But he has a mirror in his bed and he looks at himself all the time in it, so he probably just wasn’t interested that day.
Anyway, that’s about it. We’re just plugging along. We’re seeing small improvements in his crawling. Nathan, on the other hand, is cruising around the house on all fours. Seems a little unfair :). But he is a delight and a very good kid.
Keep praying. Crawling and eating are still our goals. Let’s hope we reach them soon.
Love,
The Jewkes
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