Child Development Update

I just returned home from Conway's appointment at St. John's Child Development where he was seen by an OT and Speech Path to work on his oral motor skills and feeding issues. The waiting room was crowded so I explained his situation regarding the Synagis vaccine for RSV and they let us wait in their conference room instead of out with all the other kids. Wasn't that nice? Renee and Joann were very pleased to see that he shows no reservations about having things in his mouth anymore. He was accepting of the spoon and the chew stick the whole time. That is very awesome progress. They added a tiny drop of apple juice to the ice water we are spoon feeding him and he seemed to like that, smacking his lips a lot and cooing. He does have a "delayed" swallow, which means he needs lots of time between each "spoonful" of water to process and swallow the water. He tends to let it all pool up in the back of his throat and then it becomes overwhelming to him and he gags and sometimes vomits. We're hoping that at the next visit we'll be able to do the swallow study where they add some barium to the water and take an x-ray while he's being fed to see where the liquid goes. Some kids don't send it down the right pipe, so to speak, and so very much volume would be unsafe (aspiration danger)to proceed with. Today he still has that cold so he had a lot of mucous back there that he just couldn't get down. Joann tried using the percussion instrument on him (beating on his back to initiate a cough) which worked, but it also caused him to throw up the 12 noon feeding. All over himself and her! Mom and I thought it looked like a lot of milk (and phlegm) but Joann said that it was probably only about 15cc's. That was very reassuring to me to hear that because I feel like he really isn't throwing up all that much maybe. Obviously he's gaining weight still so that's good. We go to the GI doctor tomorrow where we will ask about increasing his bolus feeds and eventually getting off the continuous overnight feeding pump. Our goal, according to them, is to keep practicing oral stimulation with him and get him to tolerate us adding some flavored juices to his ice water and to increase the amount of bolus feedings and decrease or eliminate the continuous feeds. The filling the belly, emptying the belly thing (rather than 1/2 full all the time)is a more normal thing and so that's what we'd like him to be able to do. They do not feel at this time that the G-Button (tube in stomach) is the answer. Since they see progress they want to keep going this route (NG tube).