Friday, October 1, 2010

a report from the National Institutes of Health

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.


  1. I have had those exhausting, inspiring days too, all far from home. The anesthesia is definitely the worst part for everyone involved.

    You are a fantastic mom. I am sure you are spent after all the traveling, asking, listening, and comforting. I hope your family has a fabulous celebration with Lucy.

  2. your post made me think back to our families visit to NIH. our weeklong stay was full of good & bad times, but the support we received was tremendous. we also deal with a fairly rare syndrome and to sit and talk with someone who understands means everything.

  3. Ah, we love the Children's inn! My girls always look forward to going back after the day at the hospital, doing the arts and crafts, playing bingo, just playing with the kids who have the same hospital backgrounds that mine do. I always enjoy it when I see another family at the Inn with BBS - they are not hard to spot...

    There is SO much data given out that it is hard to remember it all - that is why I am always so happy when the huge FedEx package arrives with all the data a couple weeks later.

    I think the ERG data is going to be the most needed right now - at least it gives a glimpse as to just how her eyes are doing.

    If you want to talk about it give me a call one evening -

  4. Glad you guys made it through! Good luck on the flight home and good luck to Dave on the marathon! Happy birthday, LUCY!!!!

  5. I'm so glad you had a good trip!

  6. Fun to see! Wish we had been there but it was so fun to be on the phone with Julie. Lots to internalize!


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