Last week was filled with many doctors appointments for Bailey.... We asked lots of questions and got lots of answers. An NF team came in to examin Bailey and were quite interested in her case.
Bailey has Neurofibromatosis, and a brain tumor that first appeared to be an Acustic Neuroma or Meningioma....but a further look into this, the doctors aren't so sure.
So what is it? No one can be sure, until it is removed....but now the doctors are thinking of NOT doing a surgery. Instead they may watch the tumor for growth. Now I know these guys have YEARS of experience and probably know what they are talking about, but this just doesn't seem right.
The drs in Spokane were all set to do surgery and get the tumor out of there...while the drs here are using the watch and wait approach. Who is right? And how do we know which direction to go?
So, while Bailey is away at camp, the doctors and I are forming a plan. The first thing we need to do is rule in or out Cushing's. This is necessary because if it IS Cushing's, we can find out if THIS will require surgery--possibly coordinate it with the brain tumor surgery.
Bailey will see Endocrinology next week and have some more tests....But for now, she is having a blast at camp. Living in the moment is where we are at right now.