What the…?????
May 28, 2007 | Updates
OK, when I don’t update for so long, there is so much to tell. But I will try to make it fast.
First off, Samuel’s seizures are still a concern. However, they do seem to be better. We will probably raise his Neurontin over the next week if I can get it OK’d with the neurologist by then.
Second, Samuel’s new diet is going well. He threw up one of the first days of therapy, and hasn’t done so since. In fact, he hardly ever even spits up, so we are glad for that. It is nice to be able to feed him before school or before church and not have to worry about him throwing up on me :).
Next, amazingly enough, I figured out why Samuel had that horrible myoclonus a while back on our trip to Salt Lake. His bladder was full and he couldn’t go to the bathroom. I have known for a long time that Samuel does not urinate when he is sleeping. So I have to watch him closely when he is sick or sleeping longer than usual and I have to cath him at those times. A few days after that episode, it happened again – the exact same situation. Samuel woke up “jumping”. He was obviously upset and he was having myoclonus every few seconds. I didn’t know what was wrong, but suddenly realized his diaper wasn’t wet and he hadn’t been changed since I put him to bed. So I cathed him and as soon as I was done, he was better.
Now, you’d think I would know to keep catheters with me since that happened. But, sometimes I’m not that bright. Unfortunately, the next time it happened, we were in Orem – without a catheter. I tried getting him to relax. I tried a warm bath. I tried getting Praxair to bring me a catheter, but they didn’t have small enough ones. I tried the Instacare and they wouldn’t do it. So, we ended up in the ER. It was a nice visit this time, though. Samuel was asleep at that point, and I really don’t think the doctors or nurses thought I knew what I was doing. But I assured them his bladder was full and told them to please just cath him and we’d be on our way. They did and sure enough, he was REALLY full! And as soon as they were done, I left with my regular happy camper! Crazy, huh? If only he could say, “Mom, I have to pee!” But now I know that the myoclonus or “jumpiness” means he’s in pain somewhere. That’s probably a good thing to know. And I’ve determined that the cause was me switching him from getting formula all night to getting water all night. The water must go through him faster. So, I’m just giving him less at night now and it seems to have fixed the problem.
Hyperbarics went great! Like I said, we pulled him out early one day because he turned himself entirely around and then got stuck face down in a little spot at the end of the chamber. He was pretty gosh darn mad about that. But, otherwise, no crying in the chamber during all 10 ½ sessions! WOW! He just laid there and watched a movie – mostly Cars or Shrek. If we saw he was getting bored, we’d just pop in another movie and he’d settle back down. He also slept through some treatments since we scheduled them to be during his naptime and right after suit therapy.
Suit therapy went pretty well. We only managed 2 weeks of it, however. It was just too difficult for us to be gone any longer. We did about 2.5 hours each day and Samuel really worked hard. He would get there early in the morning, work his little butt off and literally fall asleep before we were even out the door. The therapists were great. We had Mikell who led all the therapy and worked Samuel very hard. And then there was Tenley who entertained Samuel through all the tough spots. There was also a therapist in training, Christine, who helped out a lot. Between the 3 of them and me, Samuel was out numbered! I think his favorite thing there was when Tenley would sing Signing Time and make up her own words and signs. He thought she was crazy and hilarious.
The therapy was good for Samuel. The suit really works against you, so it makes it harder to do any exercises. It really wore him out each day. We did a lot of working on head control and I did see a difference there. We also gained a lot of information to use in therapy for him at home. It would have been nice to stay another week, but we just couldn’t swing it. Hopefully, we can go back at a later time. I’m hoping that we can do it again when Samuel’s pump dosage is lower and he, hopefully, has more control over his body. We may even buy our own suit at some point. We’ll just have to see.
One quick story about therapy. Samuel did not like crawling with the suit on. Bummer, since that is really what I was hoping the suit would help him with. But for the first few days, he would just cry and cry through any crawling that we did. Yet, at the end, we would still reward him by jumping on the therapy ball or running down the hall with him. After watching the crying get worse and worse each day for about a week, I finally decided I’d had enough. So I sat Samuel down and had a talk with him. I told him that we were going to crawl no matter what. But, if he cried while he was crawling, I wouldn’t reward him. Then we tried it again. He started to cry a little and I said, “No crying! Or we’re not running!” And he would stop. I had to really coax him through the first 2 times, but he didn’t cry, so we ran! And guess what?! He didn’t cry anymore during crawling that entire next week! Sometimes I really wonder what he can understand and just when I don’t know for sure, he does things like that that tell me he absolutely does! Way to go Samuel!
And a little story about this week’s picture. I left Samuel in his bed to watch a movie and came back to find that he had pulled out his feeding tube and tied a knot in the end of it. Pretty crazy for a kid who has hardly any control over his hands. So I put the tube back in, left the room for 5 minutes, came back and Samuel had taken the pillow case off his pillow. All I can say is, “What the…?????” Oh, yea, and those are his little stocking feet up by his head!
Last of all, during our few weeks away, we reduced Samuel’s pump another 60 micrograms. He is getting very close to an overall dose of 300. The hyperbarics seems to have helped his tone as it always does, so we are ready to start going down again. And I even saw Samuel sucking on his bottom lip those last few days of hyperbarics, which is a new thing. We may have to try and do more than 10 sessions in a row next time and see how much more improvement we get.So, that’s the last 3 weeks in a nutshell. It’s been crazy and I’ve put WAY too many miles on the car. But it’s all worth it. Keep praying for our little guy! Only he’s getting bigger fast. He’s 39 inches long now. If only I could get him past 30 lbs!Love,
The Jewkes
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May 29th, 2007 at 9:11 am, Caradie Says:
Hi Teresa
I love that photo. He almost has a mischievous look in his eyes. Corb starts the suit therapy June 11th.
Have a great week
Caradie