November 14, 2005

We also went up to see an orthopedist on Thursday. He checked Samuel over and had an x-ray of his hips and left shoulder taken to make sure that they are all still in place. They all looked fine. With a lot of muscle tone, hips and other joints can tend to slip out of place because of the stress put on them. Hopefully, Samuel’s tone will subside long before any of that becomes a problem. We did talk to him about the option of using more botox on Samuel - on the muscles in his inner thigh. I will ask our rehab doctor about that also. He keeps his legs pretty straight and his knees locked tight together most of the time and a little botox might really loosen that up.

On Friday, we went to have his pump filled again. We didn’t change the dose at all even though it might help with the tightness in his legs. We didn’t want to see his start retaining urine again, so we didn’t dare up the dose. Hopefully, we made the right decision. It’s just so difficult to cath him all time and we haven’t had to cath him hardly at all the last few weeks. I hate to go back to that.

Otherwise, Samuel is doing better each day. They are slow baby steps, but they are steps the same. He is continuing to track and hear better and use his right arm. He has also started turning his head to the left. For the last 2 months, he has kept his head constantly turned to the right and nestled down in his shoulder. He is now turning his head to the left often every day. And when he does turn his head either midline or left, the tightness in his entire body reduces. It’s a GREAT change to see.

Samuel also continues to be very vocal. He will almost always goo and coo back at us when we talk to him. It has been nice to wake up some mornings to him making pleasant sounds in his crib instead of grunting and groaning. And when he does wake in the mornings, the first thing he wants is out of his crib. The moment I take him out and lay him on the floor, he is much happier.

Samuel’s favorite things to do lately are to have the ABC’s recited to him or to watch his Baby Einstein movies. He is also getting MUCH better at riding in the car. Today on the trip from Murray to Orem, he didn’t cry once even though he was wide awake. It was a miracle! Especially because he cried through most of the hyperbaric treatment. And, he kindly messed his diaper about 7 minutes into the treatment leaving him and I a wonderful hour and a half of wonderful smells inside the chamber! (Ugh!) We keep teasing the chamber tech that we are training him for the future by leaving him little spit up or diaper leak messes since he doesn’t have any kids of his own yet. He is a VERY good sport!

Tom and the kids are doing well. It’s hard having their mom and little brother gone each week and I can see it slowly taking its toll on all of us. I know I an tired and I know they complain more and more each time we leave again. But we are seeing progress with Samuel and it won’t be long until we’re home again.

Thanks again for all your prayers and support. Keep them up. I know a few of you have called me and I haven’t had a chance to get back with you yet. I will. Things are just hectic. But I absolutely appreciate the calls and concern! We love you all!

Love,
The Jewkes