I owe you all an update on Nicholas and our ExoSym mission. The paper work has been submitted. His case manager from our insurance company now check’s in with me weekly to see if there is any progress. This week she said:
“Please don’t stop reaching out to me. You don’t have to fight for this. I will do that for you.”
Did I mention her name is Jen? Jen’s are fucking awesome.
These are words I never ever expected to hear from our insurance company. Really, you will fight to get your company to pay for this expensive brace for my son? Thank you. God bless you. You are my new BFF. Sorry old BFF’s. Jen at Cigna is a my girl now. Sorry Steven I am leaving you for Jen from Cigna. She hasn’t actually done anything yet but I love her because she is on our side.
Speaking of women on our side. I took Nicholas to a new doctor about a week ago although this doctor is not new to us. I have known, respected and admired her for years. Her name is Dr. Reid Nichols and she is at AI duPont… basically in our back yard! She’s treated complex limb deformities for years including fibular hemimelia and at least one of her patients is part of our FH family. She’s brilliant and thinks outside the box. She will do whatever it takes. She treats all kinds of conditions so I feel like she has a really broad knowledge base as well. She is a kick ass doctor.
While we were at AI we also had Nick’s brace adjusted and met with an amazing gal from PT and who made some suggestions for the brace adjustment that blew me away. Dr. Nichols also had real time solutions for some of Nick’s issues. A small thing from the pharmacy for toe pain. Kinesio tape for his knee. The whole AI experience was awesome. To be fair I know AI. I am on the Family Advisory Council and spent some time as the parent rep on the Ethics Committee. I already loved the place and I felt totally confident in Dr. Nichols and I believe Nick did too.
I can not wait to get my boy to Washington to Hanger! I am so grateful to Dr. Nichols for being on our team. She always has been really but now she is in the trenches with us! She has actually met someone who has the ExoSym and connected with the creator of the brace. She is going to apply her whatever it takes motto to my kids situation and in turn I will do whatever it takes to make sure this brace gets to more kids who need it. My mission does not end with my son, though it surely beings there and is my current focus and forever first focus!
This mission is possible. This brace finally feels within reach for Nicholas. Hopefully my next update will include a date for our trip to Hanger.