We've been working with Gracie even more on oral eating and really it isn't going anywhere. Today I needed to change her NG, so I figured we would try feeding her without her NG tube to see if that would help. No change!
Gracie loves to put things in her mouth, but when it comes to food, she very rarely will allow food to pass the middle of her tongue before she lets the food pool out of her mouth. So in addition to different textures, we are trying different tastes too. Yesterday Grace loved sucking on a piece of roast beef, and last week she couldn't get enough of the olive oil and balsamic vinegar (like at Macaroni Grill) on a piece of bread. One day it will come...even if it is when she if 16 :)
(Gracie's way to wear her oxygen. Do you think it still does her any good? She is constantly doing this. )
In addition to the NG tube experiment, I took Gracie's oxygen off, just to watch her sats...it took about 45 minutes before she dropped below 70. But boy did we enjoy those 45 minutes of tube free freedom. I don't know who was happier---Gracie or Morgan. Grace rolled all over the house, she rolled into corners and places that she never has been able to get to. All the time, Morgan danced and sang, "Yeahhhhhhhhh, Gracie has no tubes! Yeahhhhhhhh, Gracie has no tubes! No more tubes for Gracie."
It was so hard to put the oxygen and NG tube back, Gracie just looked at me and started to pout. Oh how I dream of the day that Gracie could live off of oxygen, even if it is only for a couple of hours a day.