Have / Had a billion things to do today. Thankfully trekking to Gainseville wasn’t one of them. Twice this month, Shands has come to see us – and boy is that nice!
We saw Genetics two weeks ago and that got the ball rolling. Tons of lab work, x rays in our near future to check out her neck, and of course since we reported we hadn’t used Josie’s g-tube in quite some time, they scheduled a surgery clinic visit.
So today I asked about 10 billion questions, Brian and I agreed, and Josie’s g-tube / button got pulled!!!
G-tube free, baby.
She’s had it since she was a month and a half old. When we finally took her home from the hospital she had it in. We’ve essentially never known her without one — so really huge deal!
So today, Josie was commended for her chillness, some “best patient ever” comments were made and we walked out with a new kid!
Okay same kid, but compared to where we’ve come from when Josie literally took nothing by mouth and had such severe oral aversion we weren’t sure she’d ever eat by mouth, new kid 
Now I just ask some prayers we don’t have to add another surgery in a couple months. They gave us two options today before the button got pulled.
1) Being we’d schedule a surgery for her g-tube removal (and said otherwise she’d have “2 belly buttons”, eh cosmetic issue) and that a surgery would definitely close up her stoma guaranteed.
Or
2) Take it out now and let it close up on its own with a 50 / 50 that she’d need the surgery to help close it the rest of the way. We obviously opted to go the hope and see route. She’s had it over three years now, so while it will close up 99% on its own within a few hours, it could still leak and not heal quite right. They said < 2 years and you have about 100% rate of closure, and > 5 years 100% chance you need surgery, so we’re in the middle – fingers crossed, prayers please!
It is certainly adventurous being the parents of a special needs / medically complex little girl — but we are on cloud 9 right now.
Prayers all goes well from here on out with GI please!
SocialVibe