Evangleline's OK, thanks for the prayers!

We saw the neurosurgeon today at Children's Memorial Hospital and he said that Evie's x-rays show that there has not been a change in the gap in her vertebrae and its stability. Thank you, God! For now, we continue to watch her to see if there is ever a change in her mobility, and she is restricted from participating in a tumbling class :), but there isn't a need for surgery as of now for her AAI. The doctor also said that there really isn't an answer for the popping in her neck.

I am very thankful that our little one, at least for today, is okay.

Thanks for your prayers!

Evie needs prayer

We need prayer for Evangeline. About a year ago she was diagnosed with something called Atlantoaxial instability (AAI), a spinal abnormality between the C1 and C2 vertebrae. It's another by-product for some kids with Down syndrome. Anyway, a year ago the gap wasn't that big and it was stable, which was great news for us because a wide, unstable gap could warrant spinal fusion surgery and months in a halo. Not fun at all.

On Sunday, while I was getting Evie ready for church she was cuddling on my lap and I noticed a pop like movement reoccurring near the top of her spine (right where her abnormality is).

I called her neurosurgeon's office on Monday about it (the same guy who did Polly's brain surgeries) and he wanted to get her in right away for neck x-rays. I have spoken to two other moms of kids with DS and AAI, and both of them said the popping isn't good, their kids had it too, and ended up needing the fusion.

So we go in tomorrow morning at 7:30am for the x-ray and then see the neurosurgeon at 9:15.

Please pray? I don't have a good feeling about this. I am really anxious today.

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.