September 2, 2005
September 2, 2005 | Updates
I am sitting here waiting for Samuel to fall asleep. It is nearly 11 pm. He followed his usual pattern last night. He slept from about 9:30 pm until about 3:30 am. Then he was up until 5 am, but slept from then until about 9:30 am. I’m not quite sure what that 2 or 3 hours awake every night is all about, but it would be nice if we could get him to sleep through it.I sponge bathed Samuel this morning and I have found lately that he really loves to have his hands rubbed. I try to take time once a day to rub down as much of him as I can reach with all the casts and spints and monitors on him. Physical therapy came to get him at 2 pm today which was earlier than usual. So he didn’t get to take his regular nap. They casted his right arm again and this time he didn’t seem to mind it much. Then they gave him a good work out.
About 5 pm Samuel’s heart rate started hanging out around 180 and he was more upset than he had been all day. So I had them give him a dose of clondine because he hadn’t had one dose all day. Within 30 minutes, he was out cold. I got to go to Tanner’s soccer game here in Salt Lake from 5:30 until about 7:30 pm. It was nice to see him play again and when I got back, Samuel was still sound asleep.
The orthopedist also came today and made a back brace for Samuel. It’s supposed to help keep his back from arching so badly. We only put it on for a few minutes, though, because they came during the time period when Samuel’s heartrate was already up. So we will maybe try it tomorrow and see if it helps things at all. He’s got about as many braces as he can possibly have - one for his back, one for each foot and calf, one for each arm, and now we even have spints for his thumbs. He has been really digging into his fingers on his left hand because he clenches it so tight. The thumb is a mess, the pointer finger has a black nail from it, and the other three fingers have scabs on them from rubbing against something or other. So I have actually wrapped the whole hand in a washcloth and coflexed it on there for the night. Bandaids just won’t stay on because his hands are too sweaty.
He is tolerating his feeds fine even though they have increased the bolus doses today. And the daily supositories seem to be doing the trick. He is still retaining urine at times though. The change to the pump doesn’t seem to be helping that. But I think it’s because he is just never relaxed long enough to go unless he is asleep. They have a hard time cathetering him because he is so tight. I can imagine that is making it hard for him to go.
Well, enough of that stuff and onto the good stuff. Samuel was so aware today. He is getting better and better at focusing on things. He loves the mobile on his crib. And he loves to read books just like he always has. Now that the cast is on his right arm, he mostly swings it around all the time. He gets himself in the head quite a bit. But today I would hold a book in front of him and ask him to get it. He would get a frustrated/concentrating look on his face and it really seemed he was trying. He would keep that up until that right arm moved. Now mind you, whatever way it moved, it would probably hit the book. But when it did, I would put his hand around the book and he would relax and let me read it to him.
He’s still the same little boy who likes the pages turned fast. If I went too slow, he would get upset. And he is definitely focusing on the pictures. That’s the kind of stuff I love to see.
That late nap must have made it hard for him to go to sleep tonight because the tranxene at 8 and the clonadine at 9 didn’t do the trick. However within about 3 minutes of pushing the ambien into his stomach at nearly 11 pm, he was out cold. I’m absolutely certain that ambien didn’t get digested and into his bloodstream within those 3 minutes so that dose was unnecessary. But that’s usually how it goes!
Love,
Tom, Teresa, Samuel & Boys
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