May 30, 2006
May 30, 2006 | Updates
You’re all going to think I’ve abandoned you because I’ve late again on this update. But this time, I have a good reason. Our internet has been down for a few days, which nearly killed me, but it’s working again.This week, we ventured down to Primary Children’s for a pump refill. We didn’t get to see our rehab doctor because we had to change Samuel’s appointment at the last minute, but I think we saw her last month anyway (can’t remember though). No matter, we’ll see her in a few weeks when we head back down to get his pump adjusted. We’ve decided to come down 50 micrograms every 2 weeks until we see some reason to stop. So we are currently at 950 micrograms every 24 hours. I’m sure hoping we can go way down, and that we’ll see some gains in his movements as we do. But we’ll just have to wait and see.
We ended that day by driving to Orem to go to my sister’s graduation party. I think Samuel enjoyed it, but he was a little agitated. I think maybe he was just hungry because once I fed him, he was good to go again. But he did really well for such a long day and didn’t even scream on the way home.
We spent this weekend camping again. Samuel and I just drove up during the days and came back home at nights. He seemed to enjoy it, but he has been a little upset in the evenings again. I basically have learned that if you don’t let him get in a bad mood, then you’re good all day. But if I’m late feeding him or take to long to pick him up when he cries or do something to really set him off, then I’m in for a few hours of being mad. So I try to avoid that as much as possible and am successful most days :).
Today, we ventured to Ogden for his NACD review. I told them I hadn’t done much of his stimulation program because of all the time hyperbarics took and then feeling so poorly these last few months of my pregnancy. But they said he seemed to be improving quickly on all fronts, so that was good to hear. His tracking has improved again - even though I felt he was seeing so well months ago. The other day, I took a toy and whizzed it by his head and he turned his head and eyes to follow it over and over again. I don’t think I could have done any better :)! They also felt that his tone was basically gone and that now he is working on proprioception (knowing where things on his body are). Like when you ask him to open his hand, he doesn’t do it, but if you show him his hand and then ask him to open it, he does. He just has a hard time figuring out where in the heck his hand is!
They also asked me if I thought he understood everything we said. I told them it was a guess, but my answer has to be, “Absolutely!” He just reacts appropriately to too many things that we tell him for me to believe he doesn’t understand our words. And that’s how I treat him - like he understands us. I don’t talk to him like a baby. I talk to him like an almost 3 year old. Because that’s what he is.
Our final conversation was about his eating and their suggestion was to literally give him a taste of something 30-40 times a day. That works out to about once every 20 minutes all the time he is awake, but they felt that was the only way to get him used to food being in his mouth, and I think they are right. Samuel wouldn’t ride in his carseat until we took 80 four hour trips to Murray and back. Now he rides in it fine. He also wouldn’t sit in his tumbleform chair until we worked with him everyday for about a month on it, and now he sits in it great. He hated having his teeth brushed, but now we do it several times a day and he tolerates it. I don’t know why feeding would be any different, so that is what we are going to do. Hopefully, it will work quickly, because he’s not going to like it!
Samuel still has a stuffy nose. I’m hoping that clears up soon. And the kids get out of school this week, so our house should be extra crazy.
Keep praying. We’re so impressed by our little guy! He’s working so hard.
Love,
The Jewkes
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