This blog is to chronicle my journey through the mystery of Chiari Malformation Type I.

Wednesday, June 23, 2010

Thought my Spine was Fine....hmmmm we had the four hour MRI on Kennedy's spine. And NO there wasn't any tethered cord, or syromelogia...but we did find cervical stenosis. She is only 5! Geez.So we will do the spinal surgery at the same time as the brain surgery.

So, she will be having a subocciptal craniectomy and a cervical lamenictomy on July 21st... exactly 7 days after her 6th birthday. Am I scared? Absolutely. Has everything in my life changed now? Yes it has.

We have seem some friends leave our lives. We have seen strangers be open and kind and loving... lending a shoulder whenever they could.

As the time draws closer, I will post video clips/pictures of the procedure, but for now I can't look at them without falling apart. I have been having some really rough days. I decided to plant my feet firmly on the ground, get some people out of my life, and focus ONLY on what's important in my life.

I will post some funny pictures about Kennedy soon!


  1. nice blog , there are so many sites to help with this illness and chiari experts all over the US. WWW.ASAP.ORG

  2. I was asked to post a note to let all know how Kennedy is doing! She is doing amazing! She doing better than doctors expected to do! She does recognize her mom and doing good. She however is in some pain therefore doctors ar trying to get her on some lighter pain medications.
    The family would like for you to continue to pray for her speedy recovery and pray that all continues to go well.
    I would personally ask that everyone give what you can to assist this family.