Saturday, September 1, 2012

Chiari Malformation Awareness

Our lives forever changed seven months ago when we got that dreaded phone call from the doctor explaining that Ashlyn had an incurable brain malformation called Chiari Malformation (in short, her brain was sinking down into her spinal cord) and that she was being referred to a neurosurgeon.  I will always remember that day and the feeling of my heart sinking as tears streamed down my dismayed face.

Ashlyn had brain surgery 5 months ago to help open her skull and remove her top vertebrae to make more room for her brain.  I remember our time spent at Duke Children's Hospital all too well.  I remember the doctors and the nurses who cared for Ashlyn, I remember Ashlyn's swollen face, screams of pain and tender incision in the back of her head.  I remember the sleepless nights, I remember crying out to God.

It was a tough journey, but Ashlyn has made GREAT strides!!  We choose to focus on the positive, on her reaching new milestones, her laughter, and her developing personality.

CHIARI will forever be a part of our vocabulary and our life now, as it is INCURABLE, but that won't stop Ashlyn!  She is our little miracle.

You can read more about Ashlyn's Chiari journey on my other blog called Chiari Hope.

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