A little bit if fun and exciting news to report. Elias had a MBS study done today and he did beautiful. The speech therapist and his nurse was telling us how they really wished we could have been present to witness this. He was having a blast they told us. He was given apple sauce which apparently after a moment of, hey what is this, he enjoyed all they gave him. He would take it in his mouth and hold it there, then swallow a little and repeat. They said it was so fun to watch. He also got some liquid from a sippy cup and enjoyed that activity as well. They told us his swallow was strong and solid with no aspiration, which means he is managing his upper secretions well. This was really great news and brought a few tears of joy to hear about it even though we were unable to witness the milestone. We are still uncertain when they will give the green light to begin some oral feeding, but just knowing that he doesn’t appear to struggle with what to do or even requiring intense therapy to teach him was a blessing to learn. It just is another bit of proof that Elias is ready to be like other kids his age doing age appropriate activities. We are proud of him and look forward to sharing his first “feeding” hopefully in the near future.
While he was down doing the study they were going to place an NJ tube for feeding the next 5 days. Of course they were unable to accomplish this task. They could not get it past the stomach, it just kept curling up. Finally the doctor decided to stop because Elias had received enough radiation for the day. His nurse told us his words were, “ I’m not going to continue and torture this kid (referring to the sliding of the tube in his nose), besides he is going to start glowing soon.” This obviously left us with quite a problem with the only answer being that which we tried to avoid in the first place. Feeding him gastric again. That is what we are doing and after much discussion and the understanding that the weaned medications may need to be changed back. We are monitoring him closely for even the slightest sign of reflux aspirations. The trick is to keep him hydrated and ensure he gets his nutrients, but at the same time not let him deteriorate where he will not endure surgery. It is certainly a delicate balance, but one we had to go with. There simply were no alternatives. While the doctors are all amazed at how quickly and radically everything happened, completely changing the dynamics of the entire plan, we were not. This was, as we said before, Elias calling the shots and reminding then that he is the boss and in control. We have seen him do this before and I’m sure he will do it again.