Waiting Part 2

Yesterday we had our 1st visit to UH in Cleveland. I did not realize they are so connected with Rainbow Babies until we got there.
Lexie's Dr, Dr Tamborro, is very nice. She spent a lot of time with us and Lexie. I think she checked over every inch of skin Lexie has. Including, taking the time to examine her scalp thoroughly as well.
Dr Tamborro had three interns working with her as well. They were all in the room as well.

I was hoping to get answers yesterday. But, instead Dr Tamburro requested that we sign a release for them to do their own tests  on Lexie's biopsy. And, explained Childrens Hospital should still have her skin blocks.

She explained than the Non-Langerhans Cell Histiocytosis is a very tough diagnosis. And, she has all the Drs we need at Rainbow to take care of her if that is what she has. But, she would like them to confirm the diagnosis in their own lab first.

Part of me wants to hope Childrens was wrong. Maybe they misdiagnosed. Maybe they saw the skin wrong. Maybe the lighting was off. All these thoughts have crossed my mind. And, yes I do hope they were wrong. I wish my daughter did not have this horrible diagnosis.

But, the other part of me, wants to let those thoughts pass as quickly as the come, fearing that I will have to go through the realization process all over again in 2-3 weeks when we have the results again.

Dr Tamburro also explained she hoped the skin blocks would be enough. If not, Lexie may have to undergo another biopsy. Which, in the grand scheme of things is small. But, no one wants their baby to be put under and chopped on. I am praying they have what they need to do their own testing.

So, here we are again, waiting. Hopeful for good news, but knowing this might be even more of a confirmation that she has it.