Busy day. Addyson had her hematology appointment at chop today. Hematology said they feel her CBC /platelet issues are secondary and due to her primary issues which fall under Gi and rheumatology. They said that if she goes in for a g tube surgery then we should do her bone marrow biopsy at the same time. They also thanked us for doing the clinical trial at Nih to try to help other kids with fever disorders. Even today her dr said she’s just complicated. We hear this everytime. It’s frustrating at times but I do think the drs today were really looking big picture. They gave us a plan which is good.
So thankful a friend was able to come with and make the two days less stressful. She was able to listen and help w addyson so I could be 100% ears when the drs came in. I know she is missing her family to help us and I greatly appreciate that.
We spent some time at the zoo today which was great although addysons anxiety is very high the past few days and is crazy today. I don’t expect it to calm down till after dr Boyle tomorrow.
Beaming with hope 