I totally forgot to update so I apologize! The other night left me in a grumpy mood, but we had another CARE conference and were able to get everyone on the same page! I stressed that I needed them to treat Averie like she can be cured...I totally feel that some doctors see her diagnosis and have already written her off. I'm not going to allow that attitude around her. All and all I think they get it or are pretending too :)
We have Averie on bipap most of the time, with "sprints" of high flow 3 times a day. She is doing awesome, making great communication with her eyes and even mustered up a sctratchy "not yet" as we were trying to suction her between coughs! The nurse and I started laughing as we confirmed what we thought we had both heard!
Now mom and I have a tough call to make...leave Averie a day early(w/ her dad) and head for home...in hopes we'll get there just after she does. Or wait for her to leave and end up having to wait for us on the back end. Not easy either way....only cause I won't see her for at least 48 hours!!!!!