I know I’m terrible at posting. We are trying to enjoy our Summer. Kings Island, movie theaters, Cincinnati Zoo and whatever else we can find to do. Doctor appointments and therapy visits round off our weeks. We’ve seen Endocrine (nothing new, rediscussing GHT), Pulmonary (started a couple new meds, discussed BiPap and IVIG), Gastro (started draining the G port), Ortho (status quo), ophthalmology (eyes are worse/crossing so getting new glasses) and her special needs ped (who keeps everything running smoothly).
Ava’s appointment with Dr Kendall in Atlanta is next Tuesday. I am so nervous about this. She’s the Mitochondrial disease specialist that will be taking over care for Ava’s primary Mitochondrial disease. We will be leaving Monday and staying in Atlanta for a few days. Dr Kendall will come up with a plan of care and protocol letters for Ava. Her specialists are all on board with this, and we are so grateful for that. Ava has some great doctors.
Upcoming appointments are with Genetics, Neuro, Rehab, Endo, Cardio and possible immunology.
Of course, glucose is an issue. We can’t keep her above 60 lately. When she drops she has ZERO symptoms. Imagine how I feel when my child’s blood sugar is 35 while she’s playing? Her body is used to it. We now only treat when she’s below 45. She’s lost some more weight so her feed rate was increased and her formula changed.
School will be starting in less than a month. Ava was approved for (more…)