October 30, 2005

The only change I’ve really seen in Samuel since we started the treatments is that he seems to be more verbal. That doesn’t mean that he is talking, but he is babbling and more apt to let me know if he is upset or wants something. He just mostly seems to be moving his mouth more and making more and different sounds with it. We’ll see what another week of treatments brings.

Otherwise, he is much the same as the prior week. His right arm is really no longer spastic at all. His left arm is still pretty tight. His back arching is nearly gone unless he is upset and then he does it a bit. His legs don’t move much and are still pretty tight, but his ankles seem to be keeping their range just fine if he wears his feet braces at night. He still keeps his head to the right most of the time. But lately, if you move it to the left, he will keep it there or at least midline for a few minutes before moving it back. His tracking with his eyes has gotten really good. He can track horizontally, vertically and even diagonally. And best of all, Samuel is still enjoying being held. That is the most wonderful thing since it has been so long since we could hold him and comfort him.

Samuel got a stander this week and a tumble form chair. The stander is used to put weight on his lower body. Our bodies were meant to be weight bearing, and if he doesn’t stand in the stander at least sometimes, his bones and joints won’t grow correctly. His tumble form chair just looks like a small banana chair with straps to hold him in. It will be good for feeding him (when he can eat) and just to put him in when we can’t hold him and he wants to be sitting up.

The therapists again said he looks so much better than when we first brought him home. And even though we reduced his baclofen 10 days ago, they don’t see increase in his muscle tightness. He is also now off his stool softener and his clonadine. I am working down his tranxene, too. I took him off his prevacid to see if he would get fewer stomach aches and it seems to have helped. He is not arching like before and may not have any reflux at all, so there probably isn’t even a need for him to be taking the prevacid. That just leaves him on the tranxene (which we’re working down), the keppra, a multivitamin and suppositories and melatonin when needed. I’d like to someday soon see him off everything.

We are also still working on a feeding solution that doesn’t rely totally on Pediasure. Our doctor feels that Pediasure with a multivitamin has all the nutrition he needs. But I breast fed my babies because I didn’t believe they could get the best nutrition from a can, and I still feel that way. There are ways to feed him REAL food and still get him the vitamins and nutrition he needs. So we’re working on getting that figured out with a nutritionist.

Finally, Samuel is getting better at moving his right arm in a purposeful way. He doesn’t have a lot of control over it, but he certainly makes a great effort to accomplish things with it.

Keep up the prayers and faith! Good things come to those who are patient!

Love,
The Jewkes