So we ended up getting an appointment with ENT last Tuesday instead of waiting until April.
Here is the bad news: She is not ready to get her trach out. She apparently has tracheomalacia. It is a "floppy airway"- or her airway collapses. It can either be congenital (she was born with it) or acquired (it happened from having the trach in for so long). We were so disappointed when he told us that she wasn't ready that we didn't even ask any questions. Stupid us because now we have tons of questions. We have no idea if hers in congenital or acquired. He mentioned it at her appointment in Jan, but acted like it was no big deal. But he didn't mention it after her scope in Dec. He said everything was fine. So we have no idea. If it is congenital there is a chance that it will get better on its own with time. If it's acquired there is a good chance that she will need surgery to fix it. Just what we need right? Please keep your fingers crossed that it fixes itself! She will have another scope in the OR in June to see how it is progressing and we will go from there. In the mean time we are thinking about getting a second opinion.
Here is the good news: We also saw her surgeon and he said she is ready for her next surgery! It is scheduled for April 13th! We can't believe it is so soon. Two weeks from today! He is hoping to get it mostly flat this time! He will also be replacing the piece of Gortex that is in there with a new piece and he hopes to be able to cover the whole thing in skin (because right now there are exposed areas of Gortex). That means we won't have to put a dressing on it anymore! And it shouldn't stink anymore, yay!
More good news: She is now signing a few words consistently. She says "more", "hat", and "dog". She is getting very good at walking (with assistance) and we are working on only holding on with one hand. She can now roll from her back to her belly and push herself the whole way up to sitting. Which is amazing because it takes a lot of strength to do that! We are also working on getting her to pull herself up onto the coffee table/couch. She cruises very fast around them now. We can't leave her anywhere now. We are so used to having an immobile baby! Well not anymore! She has learned how to do so much in the past couple months and is progressing very well.
Weight is still an issue. She was up to 14 lbs. 1 oz. the last time I posted. She is now back down to 13 lbs. 13 oz. She fluctuates a lot. Mostly depending on how much she throws up. We will be putting her on Pediasure 1.5 soon. The regular Pediasure that she gets now has 240 calories per bottle and the 1.5 has 350 calories per bottle. We really hope this helps because if it doesn't we don't know what we are going to do. I am going to have to get her 3-6 month clothes out from last summer for spring (if it ever comes)!
P.S. This was for you, Shannon :)