We can't feed him any thin fluids because he most definitely will aspirate. This means fluids or food can go into his lungs. So we have to use this stuff called Thick It to help make his bottles thicker for him to drink. This means it will take longer and more work on his part; it has the consistency of a milkshake. I also have to puree his foods to make it easier for him to eat. Positioning is key, to make sure he doesn't aspirate, so no being on his back or anything like that. I feel bad that I didnt' know this was going on- what clued me in is his recent coughing when eating.His feeding therapist wants to work with him a little longer, and see if he gets stronger, then do another barium swallow study. If he hasn't improved, we may consider looking at a G Tube. This would not replace his eating, but would be an option if he isn't eating well. The key is SAFETY- I don't want him to get pneumonia or get damaged lungs. It doesn't mean giving up if we do it, it means that we want his safety and for him to get all the foods and calories he needs.
We start a Music Therapy class, and it should be a weekly thing if we enjoy it. We will also follow up with Gastroenterology to discuss the possibilities of a G Tube. (I have mentioned the Ketogenic diet before, and a G Tube would actually make this process easier). We will also continue to follow up with our rehabilitation nurse & doctor, Neurology and his feeding specialist...along with his other therapies. We are having him fitted for a new stander that will be his own (yay!) and then some orthopedic braces for his ankles. He needs some extra support when standing, since they are so weak and floppy. Whew! Busy times. I hope I can keep up. Stay posted for more details on his upcoming activities.