A little update on Mya since we have been home. She is still off her feeding tube and wanting to drink milk like a champ. She is pretty much maintaining her weight at this point but at least she is not losing. We are really struggling and it has been tough but every week is getting a little better. We have been in close contact with Ben and have sent him feeding footage twice now to get any feedback that may help us out.
Our attempt to keep her healthy miserably failed since she already has a cold...cough...and runny nose. I swear....any little bug the poor thing gets! The extra mucus is just never good for a kid that loves to puke! I know....you totally want to hear about my kids mucus! We have seen a spike in her vomiting since she has gotten a cold but it's manageable. (She is still able to keep enough down to stay hydrated and full of energy for sure!)
I wish I had a better post to type but it is what it is! She is showing a lot of resistance to eating the purees but with time we are slowly seeing her guard go down. We are going to stick with it for a few months and see what happens.
No matter what happens we are going to keep fighting for her!!