Update

So we went to Salt Lake on Wednesday and Thursday and had a renal appointment, sweat chloride test to see if she had CF (cycstic fibrosis). We also had to go to CT to see if her GJ tube (feeding tube) was in place. We found out actually surprisingly good news. Her feeding tube is in very good placement so we won't have to do anything with that. Her CF test came back normal so that is a HUGE relief! And now the bummer side of our good news....We went to see the Kidney specialist and they didn't really do anything...they put her on a new medication and she did grow 2 inches since june which is great!!!!! She is 22 lbs so that is also terriffic!! But they didn't want to put her offically on the transplant list they said she is doing too well for right now. Her kidney function did go up a little bit so now her function is at 20%. So it's good but it's keeping her off the list. When I asked if we were still trying to do a transplant before she needs dialysis....The doc's exact words were...."well dialysis wouldn't be that bad if she ends up haveing to do that first." and when I asked about when she would be put on the list he said "sometime in the fall-ish" Gotta love doc's right. We are going to get a second opinion from another doc in the same clinic we just like him better and would like to actually switch to his care but for now were just going to do a follow up and find out what he would do in Brynnah's case if anything different at all. Another peice of good news is that We are going to make an appointment to see the Genetics doc next week who knows when we'll actually be seen but it's another good step I guess. Brynnah is still getting better with her animal sounds and says like 5 more sounds! It's crazy how fast she's picking things up....she is soooo AMAZING!!