Archive for May, 2006
May 2, 2006
May 2, 2006 | Updates
Sorry for taking so long to post an update. Things have been hectic, but not because of Samuel, mostly because of me. I’m just getting those great things that come with pregnancy - the inability to bend over, the inability to sleep well, swollen ankles, upset stomach and, of course, back pain. It makes the days go slower and mostly frustrates me because I can’t accomplish the things that I want to accomplish with Samuel when I can barely pick him up off the floor. I’m afraid it’s going to be a LONG 2 months before this new baby comes and a long few weeks afterwards as I recover. But not much I can do about it :).Samuel is doing fine. We finished our 8 weeks of hyperbarics and can now say we’ve done 80 treatments. We really should get a medal or something, don’t you think :)? But it has been so worth it. His vision has improved to what I would consider normal, his hearing is normal, his drooling is mostly gone and his tone is, well, amazingly better. Originally, we were told that he would always have contractures in his neck, tight shoulders, arms & hands, problems with his ankles & tendons in his legs and that he would most likely develop scoliosis. Now we’re trying to figure out what medications we can reduce because he is so limp. It’s great!
We had another pump refill this week and reduced his baclofen pump to 1050 micrograms every 24 hours. We are considering going down every 2 weeks instead of every month so we can reduce his dosage faster. His rehab doctor said all his joints looks great. Even his shoulder that was barely moveable months ago is nearing normal range again. And I have to insert here that we don’t stretch him or have him wear his dafo boots to stretch his tendons anymore EVER. In fact, his rehab doctor is thinking that giving him a little tone might make it easier for him to hold his head up and move. I just don’t know how to express what a miracle that is. Eight months ago, no one ever would have believed that we would be complaining that he doesn’t have enough tone. And I’m not complaining because too little tone seems like a much better problem than too much tone. Too much tone can lead to a lot of surgeries and bracings and other things to correct the problems it causes. We have certainly been blessed!
Samuel hasn’t been smiling as much. Maybe he is getting sick of us acting like crazy people trying to get him to smile :)! Actually, I just think some weeks he has less motivation than others and I honestly can’t blame him for that. He is getting much more tolerant of being on his stomach and he is very tolerant of his therapists. He is even tolerating his stander for short periods of time. The only thing he will have absolutely nothing to do with is his wheelchair. Thanks goodness it’s a loaner!
I’ll just leave you with a story from today. I was nailing shelves in Samuel’s closet to hold all his toys and therapy stuff and it was making me out of breath. (Sad, huh?) So I sat down and took a deep breath and sighed as I let it out. I noticed he was watching me, so I did it again. And then I said, “You do it.” And guess what, he did! He took a really deep breath and let it out. I said, “Yea, you did it!” And he smiled really big. We played that back and forth for about 5 minutes and he would breath normally until I would tell him it was his turn and then he would breath deep. I even switched it around and let him go first and he would still respond. It was fun!
Later, I hooked an adaptive switch to a tape recorder and when he would push it and turn the music on, I would dance to it. He smiled at that, too, and clearly enjoyed the music. It’s times like those that I just want to squeeze the little tike. He is SOOOOOO CUTE!
Last of all, we are trying to get our fence up and we could use any help that anyone is willing to give. So if you have a spare night, we’ll probably be working on it, so give us a call.
Keep praying!
Love,
The Jewkes
