March 13, 2006
March 13, 2006 | Updates
It’s been a pretty crazy week. We made it to hyperbarics everyday, but nearly missed Thursday because of all the snow. We left the house at 7:30 am that day and didn’t make Salt Lake until 11 am. We had an appointment with his rehab doctor. She was very impressed with how well he was doing and for the first time ever suggested herself that we reduce the amount of baclofen his pump is delivering. So we lowered it to 1150 micrograms a day. We also told her about hyperbarics and she seemed happy that we are trying it.Our next appointment was with the eye doctor. I won’t go into too much detail, but we won’t be going to see him again. After 2 riduculous hours in his office and a 30 second eye exam, I asked him to fill out a paper for Samuel’s vision therapist. He put that Samuel is legally blind! I wanted to call the doctor legally stupid! I asked him why he would put that and he said that he couldn’t tell what he can and can’t see. But we were sitting in the exam chair and Samuel was watching “Finding Nemo” as it played on the screen right next to the exam chart. DUH! It was definitely a waste of money because I KNOW that Samuel can see and I’m not about to let some guy spend 30 seconds with him and tell me he can’t! Oh, well. Enough ranting. We’ll get us a new doctor!
So hyperbarics came very late in the day that day and we even made it back in time for parent teacher conference for the other kids in Paradise that night.
Samuel smiled the first day in the chamber (several times). I hadn’t realized how very much he’d improved until we actually put him in. During his prior treatments, it was nearly impossible to even get his attention while in the chamber. But now, he will pay attention to me the entire time he is in there. He will watch me show him books or toys or sign to him and make faces at him. Everyone in the office also commented on how well he focuses on them and looks at them and how much noise he is making with his voice and how he gets upset less easily. It was nice to hear.
But, Samuel liked the chamber less and less as the days progressed. On Thursday, we had to pull Samuel out of the chamber 10 minutes early because he literally moved himself from one end of the bed to the other, moved his feet up to where his head should have been and his head down where his feet should have been and then rolled off the bed and up against the glass. Boy, he was mad! Today, he nearly did it again. I’m afraid he’s not going to be able to be in the chamber on his own much longer because he can move around so much. But I can’t go in with him because I’m pregnant, so we’ll have to figure something else out.
We’ve done pretty good this week. The whole family got the flu - except Samuel and I (knock on wood). Samuel is definitely moving his arms and hands in a more purposeful way. He can touch and push toys and books that you put in front of him. He can’t grab things yet, but just the fact that he can aim at things with his hands is a huge improvement.
Cute things this week were when I put my car keys in his hand and then asked him if he’d seen them. He thought that was pretty funny. And everyday when we drive the car, I say “let’s go” and then we take off and he smiles. Then I say, “stop” and I stop pretty hard so he can feel it and he smiles again. Tonight I was chasing Ben and carrying him back to see Samuel and Samuel smiled for that, too. Samuel even rocked with me several nights this past week when he couldn’t sleep. He just sat with me and relaxed in my arms. That is rare for him. But I seem to be finding more and more ways to calm him when he’s upset.
The bad thing this week was Samuel was more agitated than he has been lately, but I am certain it’s all the stress of driving and being gone all day, every day. He was much better over the weekend. I’m afraid we’ll just have to deal with it.
Thanks for all the faith and prayers! Don’t stop now!
Love,
The Jewkes
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