February 6, 2006
February 6, 2006 | Updates
Sorry for the late update this week. Today was a little hectic because we had to go to Salt Lake for doctor’s appointments and to have Samuel’d pump refilled.This week has been a harder one. Samuel was more upset and posturing more than the few weeks before. He also hasn’t been sleeping well. Some nights, I think I see every hour on the clock, but I tend to loose track after 10 or 15 times of getting up with him. For some reason, he has been waking up often during the night. And then he postures so badly, that his monitor goes off every 5 or 10 seconds (not that I could sleep with his screaming anyway). And then he wiggles the cannual out of his nose. And despite the fact that I basically surround him with pillows to protect his arms and legs from the bars of the crib, he can push himself clear up to the head of the mattress and then smash his face against the bars. Aaaaagggghhhh! I can’t just sit up with him all night, but when I don’t check him often, I always feel bad because his crying ends up being for some good reason like that. Oh, well. I do what I can.
His posturing still consists of arching his back, throwing his head to the right, pulling his left arm tight to his chest, hyperextending his right arm, bending his right leg and hyperextending his left and GRINDING HIS TEETH! And boy, oh, boy, when he wants to, he can certainly scream. He really let us have it as we tried to watch the last half of the SuperBowl on Sunday. But he finally settled down when I got that left leg bent and started giving him a play-by-play. Just be glad I’m not the national announcer. “Ready, set, go, run, run, run, throw the ball, catch it! Oh, no, they fell down and bonked their heads! They have a big owie! And that guy needs a hair cut!”
We brought his Keppra down about a 1/4 of the way and have stopped for a bit. He is having more myoclonus, but it’s not severe. However, we are wondering if it is contributing to his not sleeping. So we are waiting a bit to see if things level out. We are also still plugging along on his new diet - slow but sure. He is still getting lots of Pediasure, and we will probably continue much of that to make sure he gets enough calories. But we are adding some good, “real” food just for good measure to make sure his body is getting lots of nutrients.
HOWEVER, the smiles are STILL around. They don’t happen every day, but most days, we see at least a few. I’ve started calling them Billy Idol smiles. You know how Billy Idol just raises his lip a hair for just a split second when he does his “look”. Well, that’s what Samuel’s smiles are like. Just a quick upswing of the sides of his mouth, a fast glimpse of his teeth, and then it’s gone. So you have to be watching to see it, but they are SO CUTE! I got one this morning when I said, “Good morning, baby.” And on our trip to Salt Lake, I stopped at a drive thru for lunch. As I sat in line, I looked back at him and said, “Hi, baby.” and I got another one. Daddy even got one tonight as he talked to Samuel while Samuel sat on my lap. They are so great.
I guess everything else is good. Our insurance does want us to switch to outpatient therapy in March which is ridiculous. Samuel hates the car and can’t do more than an hour of therapy at a time. That will require a couple trips a day to Providence to do therapy in a strange place with lot of noise after a screaming trip in the car. I don’t think so! We’ll spend our whole hour just trying to calm him down. So that’s my next project is to convince them that he’s not ready for that.
No further news on Samuel’s parathyroid. But I’ve taken it upon myself to schedule an appointment with an endocrynologist (sp?). I’m sick of waiting on our rehab doctors. I also scheduled an appointment with a neurologist since we’ve never seen one. But those appointments are weeks away.
Well, keep praying. We sure can tell you all are!
Love,
The Jewkes
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