Yesterday Stacey took Jonathan down to the feeding clinic for his initial evaluation. The appointment was mostly informative for them, with Stacey giving them a brief history and answering questions about how things are going right now. We brought food and they also had a lot of food there, so they were able to see Jonathan munching on a few snacks. Overall, not much happened at the evaluation, except that we get to see even more doctors and attend more appointments in the coming months.
We're going to start working with a nutritionist once a month, at least in the beginning stages. I think after a few visits we probably won't need her help, considering the amount of knowledge we and my parents already possess on this topic. I see this visit as more of a confirmation that we are doing things right. Plus, the internet is a pretty powerful tool on this subject as well. She was very interested in working with Jonathan because we'll have to feed him through his tube initially, using what will essentially be our own liquid creations. It will have to be liquid enough to fit through the current button Jonathan has, unless we think it would be better to upgrade the size of the opening so we can feed him a more chunky-style creation. We'll see how the current button works first and maybe continue to only use formula through the pump if he can start eating enough real food on his own throughout the day.
He'll also begin a weekly food therapy clinic with a bunch of other kids. The first pass is scheduled for once a week for about three months. We think he'll do better in a social setting with other kids, so he can observe them eating. More importantly, he usually seems to feel more comfortable when there are a lot of other kids around versus just one of us and a doctor or nurse or both. It sounds like the format will be a little bit like an all you can eat buffet/potluck/party for kids. I think we'll just have to make sure he's hungry when we show up.
One of the pediatricians at the evaluation expressed her concern that we should continue to press on with testing, specifically testing related to growth hormones, etc (with our endocrinologist). She echoed my concern that although things are coming back normal otherwise for Jonathan's GI system, it doesn't make sense that he's not growing and putting on weight. With a normal child, even reaching the 100% daily caloric mark should still cause him to grow (as I would expect). The fact that we're giving him over that amount consistently now and he's still not growing seems suspect. We have a message waiting with the endocrinologist's office asking if we can have some baseline tests done now even if he doesn't think anything is going on. We don't see him for a few months, so we're hoping we can do some testing prior to our next visit.