January 16, 2006
January 16, 2006 | Updates
Well, it’s been another good week for Samuel. Yeah! This week, we went down to Primary Children’s to have Samuel’s pump refilled. We also talked with the doctor about having some tests run to ensure that Samuel is getting enough calcium, vitamin D, etc. They drew some blood and the test results should come back soon.We also visited the NACD for our 3 month evaluation and to get a new therapy program to do at home. They were very impressed with the improvements in Samuel’s vision. They said his vision is nearly normal and that the only problem still remaining seems to be that his eyes are more dilated than normal. That means he is probably getting too much light and most things look a little bleached to him. We are hoping it is just his medications and that it will eventually subside.
The NACD also noticed a huge improvement in the feeling in Samuel’s legs and feet. When we originally visited, Samuel did not even seem to have a Babinsky reflex. (That is something that doctor’s check on infants to ensure that they have feeling in their feet.) On this visit, his reflex was much improved showing that he is feeling much, much more in his legs and feet. That would probably explain the fact that he is moving and bending his legs much more than before.
Samuel also had several days last week where 3 therapists came to our home in one day. As long as we spread the visits apart, Samuel seems to do pretty well. It is hard for him to work for an entire hour at a time, but he does calm down fairly quickly if he does get upset. (I’ve actually had 2 therapists comment on how quickly he now calms down when he does get upset.)
Samuel’s new physical therapist is my favorite by far. He is our 3rd physical therapist because we kept asking for one with more pediatric experience. He is working on strengthening exercises with Samuel to improve the muscles used to roll over and to hold up his head. Samuel seems to really try and works so hard when that therapist is here. I can see him strengthening those muscles each day, and it’s pretty exciting! And today, Samuel rolled clear over from his back to his stomach. He cheated a little because he got his left hand back behind him before rolling over, which made it much easier, but he did it! I left him in his room on his back and when I came back, he was mad because he was stuck on his stomach! He also can roll from one side to the other. Most often, he rolls from his left side to his right, but I know he can do it both ways. He is definitely moving more and more each day. It’s fun to see.
Another fun change is Samuel is babbling more and more. The other night, I could have sworn he was singing to me as he lay in bed trying to fall to sleep. We have also heard him “say” lots of different words. It’s a strange thing when you’re saying the same word to him over and over and he’s trying so hard to say it and then something comes out that sounds just like it. It makes you want to jump up and down, but then again, you know it was probably just a coincidence and not the word at all :-). Oh, well, it’s exciting to hear either way.
I’ve also been letting Samuel choose the movies he wants to watch. He seems to choose certain ones that are his favorites by staring at them when I hold up the choices. We are also working with him to get him to blink his eyes to say “yes”. We already know when he doesn’t want something because he gets upset. But it would be nice for him to be able to tell us what he does want.
Well, overall, Samuel is still calmer, sleeping better and just doing better. He seems to have regained his drive to relearn all that he has lost and he seems to be suffering so much less. We are so grateful for these small changes that are such miracles to us!
Keep praying. We sure need it :-)!
Love,
The Jewkes
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