Tuesday, March 3

Texas Children's Update

This morning we headed to Houston bright and early for Ainsley's doctors apt.
It was in the 40s when we left home and 4 hours later it was 70s in Houston!
Miss Emily had given us some recommendations for lunch-we love Mexican food so this was a perfect choice!

We got to the hospital a bit early so we explored the gift shop and this fountain!
We had a long wait, but finally saw the resident at 3:30 pm.
He did a great job taking her history. After gathering all of our info and an initial eval he said he was going to get Dr. Lotze... 
I told Ryan when he left the room that I hope we are able to see him because he came HIGHLY recommend. He is a neuromuscular doctor and I was told he wasn't accepting new patients so they booked us with another neurologist.
10 minutes later Dr. Lotze came in to see us and spent 45+ minutes with us!
He said after taking her history and an eval that he recommended doing a wide panel genetic test to determine if Ainsley has an underlying muscule disorder. He also recommended having her seen by PT regularly to help with her on going toe walking. If not addressed it could lead to the need for casts, so we will get right on that!
He said there is a reason for the ongoing elevated CK level and to our surprise the carrier testing would be at the bottom of his list of possibilities. This genetic test that he orders will screen for carrier testing too.
The genetic test will take 4 months and he'll want to go over the results in person. The testing is $19,000 so they are going to submit to our insurance company and call us when it is approved, this could take up to 30 days. 
Due to insurance, we'll have to have the lab work for all three of us done at Texas Childrens in Houston.
Ains did great today!
She ate SO much for dinner!

So we topped off the meal with some ice cream!
We are thankful for getting connected to an exceptional doctor today who will help us in the months to come to get some answers for our sweet girl.

1 comment:

Angie said...

Shelby, that's great news. I am so happy that he spent so much time with you all. I hope that you finally get some answers!
much love,