December 4, 2005
December 4, 2005 | Updates
Well, we spent another week at Grandma’s house doing hyperbaric treatments. We tried putting Samuel in the chamber by himself starting the 3 days before our Thanksgiving break. We thought maybe he would be happier in there alone instead of squished up against one of us in the tiny chamber. It hasn’t seemed to make much of a difference one way or the other. Some days he is happy and others he is mad. But it doesn’t seem to make a difference if someone is with him in the chamber or not. And he gets A LOT less sweaty in there on his own, so we will keep trying it that way.We have just 12 hyperbaric treatments remaining before we hit the 40 mark. Then we will take a break before we start another round. I have decided to just stay at home and make the drive every day for the remaining 2 weeks. It makes for a very long day, but I just can’t stand to be away from Tom and the boys any longer. It is hard on them and me. So, hopefully, the next 2 weeks will go very fast.
Samuel took about 10 days before he finally started sleeping well again. I had to give back some of the medications he was taking to sleep at night to get him back on schedule. But I only had to give him half the doses he used to take and it worked. Now I’ve backed off on some of them again and he continues to sleep through the night fairly well.
He still is posturing more than he was about a month ago. I’m not quite sure why. We did refill his pump last week and we also had the doctor put some more botox into some of his muscles - his inner thighs, his back, and his left shoulder. He got a flu shot that day and had some blood drawn to check his thyroid, electrylites and a few other things. Poor Samuel had 15 pokes with a needle that afternoon. But he only cried for the pump refill. All the others he just grimaced about. The botox seems to be helping already as he is bending his left leg more than I have seen since the accident and his left shoulder seems to be looser.
Samuel is moving his head to the left more and more each day. That is a nice thing to see. He is still tracking us and can hear us and is trying to make different noises with his voice. We continue to try to feed him, but are being very cautious since we are unsure as to whether or not he is aspirating when he swallows. We are looking into a program called vita-stim that can stimulate a person to swallow until they get the hang of it. They don’t know if it is something that will work for Samuel, but we will at least have him evaluated to see.
We are also trying to wean Samuel off his tranxene. I’m afraid that is going to be a difficult process. It is addictive and it will be hard to tell if it is the injury to his brain that is causing his agitation or the reduction in the medication as we wean him off it. But it would be better for him to be off it if he can handle it. I am also looking into an herb called 5HTP that is supposed to help with sleep and anxiety. I’m hoping it can counteract the reduction in the tranxene and possibly help Samuel’s mood.
I guess that is the most difficult thing right now is Samuel is still not smiling or showing expressions of happiness. Things would be a lot more bearable if we could see that he enjoyed life at times. I don’t know if a 2 year old can be depressed, but I wonder. He did smile the other day at one of his therapists. But it was so unexpected and at a moment that I wouldn’t have thought he would smile that I am unsure whether or not it was intentional. I’m assuming it was though! It sure did my heart good and I’m sure the therapist thought I overreacted to it, but I hadn’t seen that smile for 2 1/2 months! I hope we start seeing it more often in the near future.
Please keep praying for Samuel. We would so love for him to just be comfortable and happy and able to at least enjoy some things in life.
Love,
The Jewkes
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