I am back from Ravenna's appointment, Grandma has the kids for a bit and I wanted to write. Thank you all SO much for praying, it was a way bigger day than I imagined and it felt so good to know that we were being prayed for.
I am not sure how to put it all into words, my heart feels very raw and tears are right there. I hate that my little girl has to go through all of this. I hate the awful gutteral, heartwrenching process of having my child restrained, screaming like a wild animal while blood is being drawn...lots of blood. It breaks my heart to see her huddled so small and frail in her blankie aftewards, eyes bloodshot, shoulders still shaking. I hate that I cannot protect her and that I cannot promise that there will be no more.
On the other hand, the clinic was beyond amazing. Seriously after my meeting with the Hematologist (before the blood draw) I just sat there in tears of thankfulness. They listened, really listened. They have a plan and some idea of what is going on. They LOVED my daughter so very well. Every single one of them. They took their time, they let her take her time. They did everything humanly possible to make the blood draw easy...there was just so much compassion.
I love the Hematologist, she is so on everything and knowledgable. Seriously, she knows her stuff. Where we are at now is this. Ravenna has a blood disorder, some sort of very rare one. We go back in next week for the results of the tests they drew for today. There are three possible things that could be going on (this is lots of details, sorry it helps me function!).
* A blood factor disorder: They have ruled out all but a Factor 13 disorder. They tested for it today. It is a scary one with big risk factors. It also is the rarest blood disorder in the world. Seriously.
* Platelet disorder: Her platelet counts are normal but her actual platelets may not be functioning correctly. We are waiting to get the results back from the tests the drew for today before testing for platelet stuff....I guess it is a very specialized test that take hours and has to be done at an even more specialized lab.
* Fibrin Disorder: I really do not know much about what this is but I know they are testing for it.
* Then you get into what the Hematologist calls even more rare syndromes. She described one that she has seen one time. I intentionall did not write down specific names of syndromes and disorders because I knew I would drive myself crazy looking them up.
Honestly, I'm scared. I feel pretty overwhelmed. I think in my mind I was hoping we would go in and she would tell us that it must be no big deal since the tests have been all coming back normal. But we are in the world of transfusions, tissue organ and brain bleeds...
Thanks for your prayers. When all is said and done it all comes down to the fact that this is an honor. I get to love this brave, beautiful, compassionate daughter of mine. God chose for us to walk this road together. I am so incredibly lucky that I am the one who gets to hold her, to kiss her to hear as her giggles come back. I am so very proud of her and that I get to be her Mama.