Ethan wrapped up an incredible week today. We transitioned from the feeding team to me! I am now employing the protocol in the feeding room while the feeder/recorder view from the observation room. The protocol is a series of standard actions within a certain timeframe that I must follow based on Ethan's response to the food presented. I started feeding Ethan at the dinner feeding yesterday (Thursday) and I fed him at each meal today. Ethan was fantastic.
He has turned a corner this week!
One of our goals is to get Ethan to accept Barium (a substance that is added to his food and will appear in an xray) so a swallow study can be done to scientifically tell whether Ethan is protecting his airway when he drinks. The swallow study is becoming more important because his rate of coughing has increased somewhat with the thinner milk drink. We are trying to get him to accept Barium so a swallow study can be done next Tuesday. So far so good. Ethan was able to take a small amount of Barium in milk at 3 feedings today.
Because Ethan is doing so well with eating this week, Mark and I are hoping that he may be able to do without a G tube. It would be a long shot at this point, but please keep your fingers crossed. Ethan would have to show that he can take his Prevacid (antacid) orally before the surgery next Thursday. No luck so far, but we'll try harder next week. He fights the solutab from getting into his mouth, and he spits it out furiously if we dilute it and try to get it into his mouth.
Mark, Emma & Evan are coming to Baltimore tomorrow and will stay until Sunday night! We are looking forward to the visit! It will be a busy weekend, because this is the first time I have to employ the feeding protocol at the Ronald McDonald House over the weekend...and by myself! I sure hope Ethan cooperates in this new setting! Mark will get to do the protocol after he is trained. He is scheduled to stay in Baltimore the last two weeks of the program so he can be trained.
Behaviors are so-so this week. The major event in the past two days is that Ethan chose to go on an elevator ride at RMH by himself yesterday. He chose the right floor and was in the hall outside our room when I found him. (Bad job choosing to go solo, but good job getting to the right place!)
Have a great weekend!
Molly & Ethan