December 11, 2005
December 11, 2005 | Updates
Well, just 7 more hyperbaric treatments to go. It hasn’t been too bad driving down to Murray from home. Samuel is usually unhappy on the way down, but then he falls asleep in the chamber and sleeps all the way home. It’s a nice quiet drive all the way home giving me lots of time to relax and think. Most of the time, he is still upset in the chamber, but nothing seems to help it, so I decided I might as well get some reading done while I wait for him. It at least makes the time go much faster for me!I noticed Wednesday this week that Samuel’s right ankle was swollen. The doctors said to just watch it and see if it went down. I wondered if maybe he had sprained his ankle in his stander because he can get his little feet out from under him and twist them in funny positions no matter how often I check on him to make sure they’re straight. I had thought about making him wear his dafo splints on his feet when he’s in the stander, but he hates the dafo’s and the stander and I hated to do both at once!
Anyway, the swelling hadn’t gone down by Saturday so I debated on whether to take him to the doctor or not. They finally told me that the swelling would go down whether or not anything was broken and that the only way to know if something was really wrong was if Samuel let me know his ankle was hurting. Well, there is NO WAY for me to know if Samuel’s ankle is hurting and I didn’t want to chance overlooking any broken bones. So I took him to the doctor for x-rays. Unbelievably, he does have a small fracture in the outside bone in his leg near his ankle. The doctor assured me that at his age it doesn’t take much force to cause such a fracture and it could have been as simple as him getting his foot caught in the slats in his crib and then kicking his leg hard against it. Anyway, they splinted his leg and will cast it next Friday for 3 weeks. So now our little guy has a broken leg on top of everything else. He will DEFINITELY be wearing his dafo’s whenever he is in the stander from now on and we’ll get some mess siding to keep his legs in his crib!
Otherwise, things are about the same. We reduced his tranxene dose to 3/4 its normal amount and haven’t felt he is any worse so we will keep trying to go down. We also started him on the 5 HTP today along with some omega 3 fats. We may also try magnesium, vitamin B or a GABA supplement to see if anything can help to calm him down and help his moods. We just don’t know if there is something his body or brain needs that it isn’t getting in order to give him feelings of calmness. So we’ll keep trying what we can until we find something that works.
Samuel’s posturing is about the same. The botox does seem to have helped his legs and his left arm - though not as much as I had hoped. We will really be stretching them everyday, though, to try and get as much benefit from it as we can. He is also continuing to try and eat. I know he can do it and his favorite thing is to have a little cold water sponged into his mouth which he will most always swallow. But the real problem is getting him calm enough to even try and be able to feed him. When he is calm, he does it. But when he’s upset, it is so hard for him. So that is our main goal right now is to try and help calm him some.
We are also a little concerned with his weight though the doctors don’t seem worried. He only weighs about 22.5 pounds. He weighed 24 pounds at his 18 month appointment nearly a year ago. He is definitely a skinny little guy. We’re hoping the omega 3 fats might help him a little with that. We’ll see.
One good thing is that Samuel is sleeping very well. He sleeps from about 10 pm until about 4:30 am when he will wake up and quietly wiggle in his crib for a while and then fall back to sleep until about 7:30 am.
Well, that’s all for now. Keep praying that our little guy to be happy and comfortable!
Love,
The Jewkes
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