Ayla is enjoying summer, we just got back from visiting family in TN and Ayla got to play with her cousins.
She is playing Upward soccer and seems to enjoy it. Most of the time she will play and participate but at times seems tired and doesn't want to "go-in." Most of the kids are that way on game day.
She has been doing really good since being out of the hospital since 4/27. She had another bronch on May 18th and we are still awaiting the fungal culture results. They were rebronching to look for mold that was seen on a previous culture. We got preliminary results back that stated there was a fungus present but it was being sent to another lab to be identified. So I am hoping that somehow it will be something less serious as the geotrichum seen before.
Our Dr at Nemours resigned and we are switching back to Shands CF Center. We have appointments on July 10 and 11 with CF & Liver Clinics. I am hoping that all goes well with that. We got labs drawn today for her appointment with Liver clinic and it was pretty rough. Ayla's last hospital stay really traumatized her to all things medically related before they even cleaned her arm she was hysterical.
I am anxious to see how the new docs at Shands will want to proceed with the mold that was present on her bronch.
We are looking forward to continuing playing and spending time together this summer, Ayla starts kindergarten on August 15th! I can't believe how big and beautiful she is. I will update more on the appointments after the 11th.
1 year ago