Sunday, May 17

Genetic test-moving forward!!!

Last Monday morning after I got checked in at the airport at DFW I called the insurance company to check on Ainsley's genetic test appeal. They shared in a very kind way we were denied a second time.
When I heard that news my heart sank. I remember feeling hopeless and helpless. As I was in line to board the plane I made a call to her doctors office at Texas Children's and pleaded for guidance. 
Ainsley's most recent PT eval showed she was in the 5th percentile for gross motor when compared to her classmates and recent blood work shows several of her tests are slightly off.  I asked for the nurse to talk with the doctor to see if he could see us sooner than September and explore our next options-maybe a muscle bioposy.
Thursday around noon I got a call out of the blue from a genetic company.
They shared the doctor's office called them and advocated for Ains to have the test. She said their company was founded by two former NIH doctors and they want their genetic testing to be available to kids who need it despite being denied by insurance.....what an absolute blessing!!
She took some info from me and said she'd call me at the end of the day with an out of pocket max that we would need to pay for the test.
I got a call around 6:45 pm Thursday night-we only have to pay a small fraction of what the test retails for $19,000. I was over joyed! 
We have been searching for the past two and a half years for answers on Ainsley's possible muscle disorder. They are hopeful we will get some answers. 
Early this week we'll travel to Austin to do our blood work. Ainsley has had to do three blood tests in the past month for thyroid regulation so she is DONE with blood work....thankfully Ryan and I have to give blood too so they can compare our genetic makeup to Ainsley's when there is any concerns. 
We normally do ice cream or a treat after blood work-this time we may need to get her a present too :)!
After I hung up with the genetic company, Ainsley's pediatrician called at 7 pm Thursday to go over all of her blood work. For the first time I didn't worry about the numbers being off because I truly feel like we'll have some clear answers in 4 months when we get the results. Either the all clear-which would be amazing or a diagnosis which will help us to know how to support Ains in the years ahead.

We'll be praying for peace over the next few months no matter what the outcome.
We are so thankful our doctor advocated for our sweet girl.
I read a conference summary online of a presentation Ainsley's neuromuscular doctor did about sharing diagnosis with families.
His level of care and knowledge will give us good comfort as he gives us the results in September.
We are so thankful for God always watching out for our little miss.  We are thankful He provided for her when doors closed last week with the insurance company. 

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