Daddy was very nice and went to my swallow study follow up appointment today so Mommy could call into an important meeting. Daddy didn't really learn much more than what Susan had already told Mommy over the phone but he did get a written report that we can share with all my other docs.
After three lactose formulas, everyone is now in agreement that it is time to put me back on soy. Mommy isn't so excited to switch formulas again but if it reduces the dirty diapers and laundry the lactose formulas are producing she is on board!
My new Mini button has been a little bit of a problem and it all came to a head today. The center (called the feeding port) pulled out today. It may explain why there has been so much leaking from my button (also resulting in lots of laundry) over the last couple of days. I am supposed to have my back up button delivered tomorrow - just in the nick of time!
My parents were very excited that I was able to tolerate my speaking valve today WITH NO HOLES!!! I wouldn't wear it for very long before I pulled it off - but I was able to wear it without any distress. It's taken a year to get to this point but it is a good sign for decannulation next year that I can wear it without modification.
Peyton Nicole Smith