Chiari coming out of the wood work

Ever since Riley had been diagnosed with Chiari Malformation, I have been obsessed with educating myself about it. For a short period of time since then, I had been consumed with learning about craniosynostosis as well. I may not have all the answers, and I know there is a ton left for me to learn, but man do I have the experience. If it was up to me, you should get by life on experiences.

Since we've been home from Riley's surgery, I have been hitting the internet hard with chiari research. I had also learned that 2 more children will be having surgery. 1 with our NS - Kristen and her son NJ, who is 9, and 1 with Dr. Iskandar at UW Madison - "M" and her daughter "L" who is 14.
I have been emailing back and forth with "M" as she is trying to prepare herself and her daughter for this surgery. It's hard to tell someone, "it's going to be OK" when there is no cure for this.
We can only hope and pray that both "L" and NJ will only need this one surgery. But there are no guarantees.

Tonight, I am meeting another mom who has an 18 month old with chiari and possible cranio. I have convinced her to go and see our NS in Chicago. Hopefully things will go well.

Now, as I sit here patiently (pulling my hair out, biting my nails, and eating everything in sight) waiting for the results of Keegan's MRI - I wonder, how rare IS Chiari Malformation?

It just seems like it is coming out of the walls lately.


BoufMom9 said...

I know there is nothing I can say to ease the tension. Just know that I am thinking of you and praying for positive results.

my4kids said...

It doesn't seem very "rare" to me.