Addyson has an appointment tomorrow that will hopefully go the way we want it to go. If so, it will be a pretty big surgery but hopefully get her on a better track.
Things have been stable.
Her ostomy is functioning. Gi wise she’s doing good. Seizures are controlled. Pots is stable (her new doctor in Georgia has been the miracle worker here). Rheumatology wise she’s the best she’s ever been. Cardiac wise she’s stable. Hoping to maybe get her off florinef soon if tomorrow’s appointment goes well.
We see gi tomorrow for a decision and then we see her surgeon next week.
Beaming with hope 