Free Falling and......

Well, along with Chiari Malformation and Syrinx, I am also discovering that there are other things I must now research.

1.  Tethered Spinal Cord and Occult Tethered Spinal Cord
2.  CSF Malabsorbtion
3.  Scoliosis
4.  Retroflexed Ondontoid
5.  Basilar Invagination
6.  Ehlers-danlos syndrome (EDS)

Perhaps other things.  I am so shocked this is all related!  I mean the most important thing as a parent when your child is ill is to find the "boo boo" then "apply the care where and as needed".

I'm learning this is a lifelong condition that requires tons of medical monitoring and care.  I have learned that my child with the syrinx issues going all down her spinal canal could become paralyzed or die from this in a worst case scenerio.  I have learned that surgery is not a cure.  I have learned that I have to try.

I have been literally pushed off a cliff and I am learning to fly.  I am free-falling in mid air and trusting that God will catch me or let me land perfectly.

We have ONE LIFE here that God gives us.  I'm letting God direct my perfect path.  Things are falling into place that ONLY God could do.

What I'm doing while I the ride?  I'm educating myself and other people with headaches and weird symptoms to never give up on finding their answers.  I am learning about diet and food (currently trying to gradually ease into a Paleo diet.

I'm driving to Austin next week to see our first Neurosurgeon to find out what his plan would be then I'm coming back home for a few days then I'm driving to New York to meet another specialist to find out what their plan is.  Then I'm comparing.  I even learned of another Neurosurgeon in Miami and Chicago.  Maybe I'll go see them too?  I do know when God tells me I'm going to hear Loud and Clear what he wants me to do and Matt and I will be in agreement.

So, please, just let go and free fall and trust God in your situation.  It is so liberating!