Update

Today Liz had an appointment at the Hem/Onc office she's been going to for the last year. We were scheduled to see Dr. Finkelstein today, who we haven't seen since he did her first bone marrow biopsy last March (we usually see other docs in the group). Dr. Finkelstein is HIGHLY regarded, a whiz and amazing with children. He is the face of "being passionate about something and dedicating your life to it." He is dedicated to saving lives and helping kids.

Anyway, I was looking forward to getting his take on all that's been going on with Elizabeth. Instead, the Nurse Practitioner walked in to see us. I do not care for her in the first place, so that, coupled with my disappointment of not having Finkelstein in the room, gave me the guts to speak up and say I was expecting Finkelstein and would wait to see him. She acted irritated, but I did not care.
I am glad I have learned to be an advocate for my daughter. I have had to fight for her and learn this crazy medical system from the inside out, but it is a privledge to do so on her behalf.
Dr. Finkelstein spent 45 minutes with us and was wonderful. He had the girls holding their stomachs in pain from laughing so hard and he held my hand as I held back tears of frustration. Here is what he thinks:

1. I am smart! : ) A professional said it, so I just had to document it : )
2. Liz is too thin and that worries him. Kaitlin was with us today (she never is, but it was a good thing she was today) and he was struck by the size difference and of course the documented changes in Liz's weight. He thinks, like we do, that she isn't absorbing nutrients.....
3.Along with not absorbing nutrients, he thinks maybe she has malabsorption of iron. Rare (not the same as having low iron), but her GI history lends to a reason this could be happening. Malabsorption of iron could lead to issues with marrow and blood counts, which she has ( even though she doesn't have low red cells).
4. She'll have absorption studies done and a specialized series of labs looking at her iron.
5. Dr. Finkelstein will oversee the "what happens next", as far as her blod and bone marrow is concerned, once the results from those studies are in. Take that Mrs. Condesending-Nurse-Practitioner-Meanie! : )
6. Hopefully these labs can get done before her March 24th appointment with her GI doctor so we can come up with a plan of treatment when we see him and have the results before her April 7th appointment with a bone marrow specialist at CH Los Angeles.

A looonnnnggg road to go. But today I feel like a plan may be starting to come together and a diagnosis found. I was heard and validated today and not told that the plan was to "watch her carefully and wait." I am tired of watching and waiting, I need a freaking plan and I feel like we may be on our way to that.

Please pray for wisdom for the doctors and for a diagnosis to be found so that we can treat Elizabeth. Pray for patience for her as she enters this next month of heavy testing and visits to the doctor and hospital.