Progress

Well, we are finally making progress. Maxwell is in the 15lbs area. Perhaps he just needed bigger meals rather than a bunch of small ones (or constant at night). I started him at the same amount as I had been using when he had the tube before but this time it seems to be working better. It is interesting to see. He is even eating a little better.

Anyhow, one of the interesting parts about all of this is the same problem we ran up against in CT. People look at Maxwell and think, "oh, he is so many months old, he needs this many calories because that is how many calories a kid his age needs. So stuff his tiny body full of so much stuff he will just throw up." Ok, so I might exagerate what they say but it seems to be the mentality with the GIs. The dietician that we met at the hospital had a much better plan, even then I will give credit to the other nutritionist, to start a little slow because he just is so small and needs to get used to it. I tend to get the idea that some people think that if you feed him as many calories as his age requires then maybe he would catch up to his age group in just a day. However it is, I will try more but will back off if he doesn't tolerate it. I like that he is making progress and growing. We are working on a pound a week, which I think is really good. At that rate he will catch up pretty quickly. Even if he gained a pound every two weeks he will still catch up pretty fast. As he gets bigger then just like a normal kid we will increase how much he needs. I also don't want to make him so full that he doesn't want to put things in his mouth. I have heard on many occasions how it is hard to get tube fed babies and kids to learn how to eat by mouth. We have worked too hard and he has made considerable progress in the mouth department that it would be a shame to lose it just because he was too full to be interested in other food.

With the blessed weight gain I also heard from the Dr. over the study in Maryland that I wanted to get Maxwell involved in. She has asked for his records and some pictures which she will review. She says the program is to help train doctors and that from the sounds of things they probably would not be able to help us much. She said it sounded like Yale did everything that they would do. This is the second or third time someone has said this to me. They realize that Maxwell has had many tests and if Yale couldn't find the answer then why would they. Who knows, maybe we found the answer and he really doesn't have a disorder at all. You never know.

However things are we are just excited that Maxwell is finally growing.