An overdue update…
August 12, 2007 | Updates
It’s been 2 1/2 weeks since I posted. Sorry for that, but time has been flying by. Samuel is doing well. The only problem, really, is that he is still so wiggly. We have to be really careful with him because he hurts himself without realizing it. Yesterday, we went to Bear Lake for the day. On the way back, I put him in his car seat. Two hours later when I took him out, he had a HUGE bruise on the outside of his right upper arm. I couldn’t figure out what had caused it. So I pulled back the cover on the side of he car seat and underneath was styrofoam padding with DENTS in it! He had hit it so hard so many times with his arm that there were dents in it. Poor kid! He also had a huge bruise on his back a week ago just above the spot where his baclofen pump catheter goes into his spine. That freaked me out because it was swollen, too. And I still haven’t been able to figure out what caused it. Last night, I clipped all his fingernails way down because he is digging into his hands and neck with them. And I have noticed that he is holding his hands closed tighter than usual, so his fingers are peeling. And his teeth grinding it back, which I am not happy about. I’m not real sure what is causing it all. I’m just hoping it will settle down a bit with time.
The good news is, he is SO aware! I got him off the neurontin and the tranxene and now he is just taking the keppra twice a day. He is getting goat’s milk and other homemade food during the day and pediatric compleat at night and a daily vitamin. He is NOT lethargic anymore, that’s for sure. He has a lot more control of his hands than I remember him having a few months ago. He is pulling out his tube nearly every day (which stinks) and it is nearly impossible to get it back in (even when I’m sitting on him)! He can get his hands up to his face so quickly and get ahold of the tube so fast, that I don’t have a chance. He can also hit his switches quickly and he seems to be trying to grab for things. In fact, he is sometimes bringing his hands to midline to touch things, which I haven’t seen before.
He is also DETERMINED once again to crawl. I know you won’t believe me, but several times over the past few weeks, we have walked into his room and he has been on his stomach with his knees underneath him and his arms straight holding himself in sort of a frog sitting position. When he does it, he even has good head control. The first time he did it, Wesley nearly passed out. He said it was the weirdest thing because he turned around and there was Samuel sitting up and looking perfectly normal just looking at him! I’ve seem him do it a few times since and he can do it very well with a little help. He is definitely determined. And I’m thinking that the hyperbarics we did a few months ago must have made a difference, but because his diet was causing him to feel so tired, he couldn’t do anything about it.
Also, as soon as I upped his calories, Samuel put on a few pounds. So, he now is fluctuating between 31 and 33 pounds. That’s good news. The bad news is, I was unintentionally starving him even though I was feeding him as many calories as the doctors had told me. Bummer. Oh, and, Samuel has started putting his legs around us and laying his head on our shoulder when we carry him. It varies how long he does it for - sometimes just for a few seconds, sometimes for 20 minutes - but either way, it is much easier to carry him when he’s cooperating! And, he is getting better and better at taking steps when we hold him up. We got fitted for his braces, so we will work on the walker next. And we should see his new bathchair tomorrow. Yippee!
Last of all, Samuel just seems to know what is going on more. Last night as I was trying to put in his feeding tube, he was really giving me hassle. So his dad came up to talk to him about it. I was sitting at Samuel’s feet and Tom was sitting at his side. He would look at Tom as he would begin to talk and then his eyes would wander over to me. Tom would say, “Look at Daddy” and Samuel would look back. So Tom would start up again and Samuel’s eyes would wander over to me. So Tom would say again, “Look at Daddy” and Samuel’s eyes would instantly look back until Tom start talking again and then his eyes would wander again. Samuel responded by looking back at Daddy about 10 different times. It was the first time I have ever seen him respond that quickly to a command. It was cute!
So, we’re just working on getting ready for school. I can’t believe how fast the summer has gone. It is my favorite time of year. But we are ready to buckle back down for another year. By the end of September, we will be trying a new herbal therapy (g-therapy). I’m hoping to see some improvements from that. And we need to get back to hyperbarics for a few more treatments within the next few months. And I need to do a little more praying about it, but I’m pretty convinced we need to try stem cells in China. I’d prefer to wait for an opportunity here in the states, but even if one comes about in the next few year (which is unlikely), unless it is a trial (which is still unlikely - especially one for children), it will be too expensive for us to try anyway. But fundraising for China is going to be a huge undertaking, so I need to be sure we are commited before we begin. Pray that we’ll know the right thing to do!
Thanks for keeping up on us and keep praying!
Love,
The Jewkes
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August 14th, 2007 at 9:54 pm, Natalie Says:
So I amvery interested in your new diet stuff. How did you figure all of that out? And would you recommend hyperbarics for Brea? You just seem so much more on top of things and know so much more about helping Samuel than I do with Brea. You are amazing. I look forward to the updates. I am glad to hear you’re doing good. I love ya and think of you often. Have a great week!
Nat