August 31, 2005

The eye doctor dilated his eyes anyway and we waited 20 minutes until they were completely dialated. Then the doctor took a look in his eyes. He said everything from that test looked fine. The doctor then took a look at Samuel’s MRI and said that all the areas of the brain associated with hearing looked fine. Well, Samuel started to wake up so the doctor put a little mobile in front of his face to see if he would focus on it. He didn’t because he was still half asleep. From that, the doctor concluded that he probably has some cortical vision impairment meaning that although his eyes are seeing the message may not be making it to the brain correctly. He said that many times that can be corrected with therapy.

I wasn’t real impressed with that last test. I thought it would have been much more effective and useful if Samuel had actually been AWAKE! But oh, well. I know that Samuel can see. It just seems like it’s difficult for him to focus on things sometimes. But if he wants to, he does. So I think it’s just going to be a matter of time and practice before his vision is totally fine.

Other than that, we spent most the day in Samuel’s room. He was pretty upset a good part of the day and we gave him clonadine at least twice more before his bedtime dose. The speach therapist did come by and try to feed him something just to see how he would react. She brought chocolate pudding, though, which was a mistake. Samuel really doesn’t like chocolate - he won’t drink chocolate milk to save his life. I know, that’s strange. But like all the doctors keep saying, “Samuel is just not typical.” So she tried some applesauce, which he seemed to like more and a popsicle, which seemed too cold. He didn’t swallow or anything, just let it linger in his mouth. She’ll be back tomorrow to try again. We just want to get his mouth used to food because I guess he’s scheduled for a swallow study and he won’t like that if he isn’t used to having food in his mouth first.

We also went to physical therapy at 4 pm. But I have given into giving him a dose of clonadine at 3:30 because he was just so upset. So he tried to sleep through therapy, but we just wouldn’t let him!

Last of all, his feeds are now up to nearly 100 cc’s per hour from his regular 50. And he seems to be tolerating them fine - unless that’s what’s making him mad instead of the new cast on his right arm. Once they reach 100, they will stop his feeds and start feeding him in boluses of 300 cc’s four times a day. And if he tolerates that and passes the swallow study, they won’t do the nissen. Instead, they will just do the g-tube.

Still no results from his EEG. His “seizures” seem to be getting worse sometimes and I’m not sure why. He has also started biting his tongue during them and gagging which makes me worry that he will throw up all these new feeds in his stomach and aspirate them. I have asked them for the results everyday now and they just keep saying they’re understaffed “down there”. Hopefully, we’ll get them tomorrow.

Keep the prayers coming. We sure need them. I know this sounds funny, but sometimes the really good days make me apprehensive of what the next day will hold. I guess I just really get my hopes up when he has a really good day and the next day is usually a disappointment because it’s not so good. Let’s hope for lots of good days in a row in the near future.

Love,
Teresa, Tom, Samuel & Boys