Just wanted to share a few updates. Lily has been tolerating the breathing treatments well and she's been staying healthy! (Knock on wood) Rose even had a minor cold this past weekend and Lily didn't catch it.
The feeding therapist in Boston wanted Lily to have a swallow study, so we attempted to do that a few weeks ago. Lily's never had one and she does cough sometimes when she drinks water. We wanted to make sure she can safely swallow water without it going into her lungs. Unfortunately, Lily refused to swallow anything while we were there. I could hardly blame her. The radiology department is a very strange place for a 2 year old. She was too weirded out. Our local feeding team has been.. disappointing. They don't seem very motivated to wean her off her feeding tube, but rather to wait until she is ready to eat. I don't agree with that philosophy and I've talked to other EA parents who weaned their kids with a company called Growing Independent Eaters. We filled out an intake form and now we have a consultation scheduled later this week. After we have the consult, they will make a weaning plan for Lily. I'm really excited and pretty confident that it will work for her. She can eat a lot of different foods, she just doesn't eat enough. She may lose a little weight during the process, but should gain it back quickly after the weaning process. They are aware she hasn't had a swallow study, but plan to watch her closely.
My parents came to visit us for a week! We had so much fun exploring Bar Harbor, Acadia, and some of Bangor. Rose also started school. It's just a half day and she's loving it! Her teacher said she is doing wonderfully.
