Thursday, March 25, 2010

Atlantoaxial Instability

It looks like we have another diagnosis for a Marchenko girl. This time it's for Evangeline.

She has Atlantoaxial Instability (also known ass AAI).

12-15% of children with Down syndrome have this gap in between vertebrae; sometimes it means no bouncy houses or gymnastics. Rarely it means spinal surgery.

As far as I know right now Evangeline has a 5mm gap between her C1 and C2 vertebrae. We have an appointment scheduled with Polly's neurosurgeon next Wednesday to find out what that means for Evie.

You know, there are some people whose children never even break an arm.

I know, strange to think.

I'll keep you updated.

On a brighter side, Evangeline has started to wave hello and bye bye (also saying "ba ba"). She seems much more comfortable in our family and has even started to interact with toys a bit. Today I kept pressing a baby's stomach. The baby would say "Mama" and Evie would fall apart giggling.

So great to see.

It's hard to believe this little girl in the picture at the top has been home for eight months.

Love is blossoming.


  1. We are proud to be with you guys through every step of your journey! love & hugs & prayers for all.

  2. Hi Gillian!

    Grace (9 w/Ds) has AAI (6mm) and is being monitored. There are no symptoms to date...we just don't do tumbling, trampolines, bouncy houses, horses, etc. I am meeting with her Dr. this coming week. Please keep us posted! Love, Paula

  3. I'm so happy to read this and so proud of you guys for persevering! Did I spell that right? LOL. I'm sorry to hear about the diagnosis, but I'm elated to hear Evie is coming out of her shell! Nika has been home for 16 months now and I still feel like we are getting to know each other, sounds weird, eh?

  4. Well, hopefully it will just need monitoring and nothing more. Goodness knows, you've had your share of drama these past 6 months! You deserve a break.

    I have the prescription to take John for the xray of his spine. Must say, I'm a bit nervous. We've been smooth sailing for awhile now; funny how when that happens, you sometimes expect a bump to be coming up ahead.

  5. Thinking of you guys. Hang in there.

  6. Sorry to hear about her diagnosis. But I bet her laugh is music to your ears! What a beautiful girl!


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