I know I’ve been MIA lately. Things are busy with back to school for Dakota and Christian. Ava’s appointment schedule is tiring. Today was hematology clinic. This specific doctor was one of the doctors that cared for me when I was Ava’s age with Neuroblastoma. She’s treating Ava for her ANC counts and anemia. She’s considering IV iron for Ava. We don’t know what’s causing the neutropenia. If it’s Mitochondrial disorder related, the treatment will be tricky. A bone marrow aspiration will be done the next time her ANC drops below 500. We need to know if the problem is her bone marrow or not.
Ava isn’t feeling great. Her G-tube and muscle biopsy surgery is Wednesday. She’s sleeping way more than she should. She plays for a few minutes then wants held for an hour. 4-6 hour naps everyday combined with smaller “cat naps”. She also sleeps 12+ hours at night.
I’m trying to keep caught up in blogland, but it’s difficult right now. I hope I’m not hurting anyone’s feelings. Everyone is in my thoughts.
Tags: g-tube, mitochodria disorder
