Surgery Date

Wednesday, August 3, 2011
With so much going on, there's been a plethora of blog posts swirling around in my head. I almost don't know where to begin. August 2011 has been the month of the doctor, that's for sure.

Yesterday we met with Abby's neurosurgeon, Dr. Proctor of Children's Hospital Boston. He went over Abby's diagnosis and the treatment (surgery followed by about 7 months of wearing a helmet). Her surgery is set for the 17th. He explained the traditional form of the surgery, CRV, where the doctors actually remove the skull bones and then a plastic surgeon fashions them to the correct size and then they place the skull bones back in place. I had no idea that's how extensive that surgery is. Thank goodness Abby will be able to have her surgery endoscopically, meaning they will make two tiny incisions and remove a strip of bone from her skull to effectively create a new soft spot for her.

The doctor seemed shocked that this is our second child with craniosynostosis and a different form of it to boot. Apparently, our girls may be one of the only sibling sets like this in the country. Can you believe that? Craziness. We kept joking we're going to be famous. New England Journal of Medicine here we come!

Matthew joked I may get my wish to be on a documentary. Oddly, I've always had the bizarre wish to be one of those people that's interviewed for a History Channel documentary. So I said if we are interviewed for anything (highly unlikely) I'm going to randomly start talking about John Adams or something. Haha. Check that one off the bucket list.

But in all seriousness, he (the doctor) suggested we meet with a geneticist to see if we can determine what's causing this. We definitely want more children (God willing) so it would be beneficial to know the likelihood of having another child with this. Not that it would really matter, but knowing our genetic makeup would be interesting.

Abby also had to have a CAT scan yesterday to conclusively determine her cranio and thankfully she fell asleep just in time to have it done, otherwise she would have needed to be sedated. That was certainly an answered prayer.

Next week we'll meet with an Ophthalmologist to test her eyes. Apparently, kids with her condition can have vision problems, but fortunately they're usually fixed by the surgery. We'll also have a pre-op appointment to meet with her team of doctors and nurses. That should prove very interesting and probably overwhelming too.

Right now I'm kind of in autopilot mode. Running around trying to get everything organized and ready for the surgery and our stay in the hospital (2 days). I'm trying not to think too much about the moment when I'll hand her over because if I start to think about it, I'll cry. So I'm just taking things one doctor's appointment at a time. For now, that's working.

Thank you all for your prayers, I really do appreciate them!

6 comments:

  1. Oh, it does sound like you've had a lot going on! I'll continue to pray for your little one and your family.

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  2. Thank you for commenting on our blog. I read about your little girl. What a little saint already suffering for poor souls! God must love them so very much to ask something so big of them at such a young age. Please know of my prayers for you and your family. God Bless.

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  3. Mandi~ thank you, we really do appreciate your prayers!

    Lindsay~ what a beautiful thought, thank you!

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  4. Oh Jennie - sorry to hear this, but yes, good thing there's an endoscopic version of the surgery. We'll be praying for little Abby and all of you especially on August 17th!

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  5. Thanks, Serena! We appreciate your prayers.

    How are you feeling? Have you felt your little one move yet? I'm so excited for you!

    XOXO

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  6. Thanks, Jennie! Feeling good and getting bigger and bigger! :) Little one has definitely been moving a lot and others have been able to feel him/her move, too, which is exciting. Can't believe I'm 26 weeks along already. Love to you all!

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