Wednesday was an amazing day. Dave and I sat with a geneticist for two whole hours asking her every question we ever dreamed of to our heart’s content. And she knew every answer. Lucy was a dreamboat full of smiles and funny things to say. She sat attentively and followed exact instructions from doctors, and she even gave one of them an impromptu kiss on the way out of her office, happily armed with a fist full of Dora stickers as a reward for her good behavior.
But yesterday? Well, yesterday was a tough day. From the moment Lucy woke up with that grumpy look I knew we were in for it. By that night Dave and I were exhausted from trying to whisper sweet nothings into her ears to try to get her to cooperate, as she swatted us and the doctors away and crumpled into a ball with a very spoiled, mean look on her face. We had to hold her down for ultrasounds and the EKG. Man alive, that little girl is one tough number. But we got through it, and we all came out in one piece.
And then there was today. Lucy’s birthday. Which just so happened to be the day for the anesthesia and the big things: the brain MRI and the sedated ERG. The big wrap-up talks with all the doctors which made me so emotional not only because of the depth of things we were dealing with but because I was surrounded by people who really, really care. And that means so much. Then on to trying to get Lucy to wake up after all those drugs when she pretty much just thrashed around like a giant wet noodle flailing all over the place, mad as a hornet.
Luckily all that was followed by a birthday cake from the sweet nurses, a few gifts, and a “birthday party” tonight with her uncle and aunt who live here. Dave headed out to run his big marathon tomorrow (I cannot believe how focused and “on” he was here when he had that coming up and an agglomeration of work issues to deal with…he is quite simply amazing how he balances it all and I’m dying I can’t be there to support him in the big marathon, black toenails and all).
I have a ton of really sub-par pictures from my small camera I brought, but for tonight, we’re heading to bed. It’s been one interesting, inspiring, educational, heart-wrenching and exhausting week. Lucy is ready to get back to her brother and sisters who are waiting with open arms to celebrate the big day with her this weekend.