I found myself being question by another mother yesterday and the story of Kody come rolling off my tongue like I had been telling a story about someone else.  How the hell that happened is beyond me.  She asked when I first knew something was not right about Kody.  In all honesty I had an intuition thing kick in when I was about 7 months pregnant with him but couldn't understand the reasoning behind it.   After he was born things seemed okay until he was about 3 years old and this child who's walking should have been improving at this point .... well it wasn't.  I proceeded to explain to her that I went through 4 pediatricians before getting a referral to see an Orthopedic doctor.  You see in Michigan a referral was recorded at the time.  I'm not sure if it's Neurologist.  Now by this time I am getting all the referrals needed but wondered why a Neuro when it was his legs that were the issue.  The Neurologist to date is my favorite of his doctors in the beginning because he didn't BS me.  He did a few in office test and a blood test for Friedreich's Ataxia but asked me to not look it up.  Okay anyone who knows me knows I did the exact opposite.  Reading about FRDA was like reading a book about my son.  3 weeks later the official diagnosis came in with a call from the doctor on a Sunday afternoon while I sat on the porch BBQing with my family.  I do believe that is the only time anyone has ever seen me cry about the situation.  I mean I have my moments and actually had one hell of a panic attack about a month after his diagnosis when he was then diagnosed with the heart condition that is caused by FRDA (Hypertrophic Cardiomyopathy).  Yes the hospital almost killed me by trying to give me heparin when they thought it was a Pulmonary Emolism.  It ended up just being a panic attack because it all was settling in for me. 

Wow I really ran with that story.  I will write more another time.