we were finally discharged from the hospital today!!!! They still don't know exactly what was/is wrong with Ayva, but she was stable enough to be sent home and followed up at the hospital next week. She could have one of three "ideas" they are bouncing around (ideas b/c they still have no clue as to what it really is). 1. HUS - a blood disorder that can cause kidney damage (resulting in dialysis and possibly a kidney transplant in the far future) 2. TTP- a blood disorder which can cause severe anemia and bleeding issues (which could result her having to have plasmapherisis- which is way too complicated to describe) or the choice I'm hoping it is 3. all her blood issues were due to the numerous infections she aquired while on ACTH. She has a follow up appointment next week and we should at least know a little more on which of those it is.
Whichever it is, we are glad to be home and I just wanted to thank all of you who were keeping us in your prayers and thoughts. I really appreciate it!