Overall the appointment with the Feeding Team in Cincinnati went well and was reassuring. We are all not quite ready to take that tube out permanently but we were able to get a new one put in and it fits so much better!
The doctor's were very pleased to see all the progress Mya has made since we were there in November for sure. She went from being like 90% tube fed to eating (although it's with a lot of encouragement) and drinking on her own!
I love Cincinnati because I feel like they look at the whole picture instead of just focusing on a growth chart. I don't need a growth chart to tell me that my kid is small....I just want to know that she is healthy!! Which they think she is!! For her height....she is 93% on her weight! So for her height she weighs a totally appropriate amount.
We are having to work pretty hard at times to encourage Mya to eat her meals but it is happening. We are looking into going to Cincinnati or possibly a hospital in Evansville where an OT....speech therapist....behavioral therapist....etc could work with her for 1...2....3....or how many ever weeks they find appropriate. The full team was meeting after we left so they are going to let me know what they decided within the next week hopefully.
So...we'll see! For now we are going to keep doing what we are doing and add a lot of butter....cream....etc to add some fat to her meals. She has come leaps and bounds in the last few months for sure! They also mentioned a medication that stimulates hunger but right now we are not going to go that far yet. At least we know that their is help out there if and when we need it!