Tuesday, March 3

Texas Children's

After a lot of waiting the day has finally come when we will travel to Houston, TX for Ainsley's appointment at Texas Children's Hospital.  This is about 3.5 hours from our home.
As many of our family and friends know, we've been trying to figure out why Ainsley's CK levels have been slightly elevated since February 2013.  
  1. Creatine kinase is an enzyme found in the heart, brain, skeletal muscle, and other tissues. Increased amounts of CK are released into the blood when there is muscle damage.
Ainsley has done several genetic and other tests and we've consulted with multiple doctors on this.
We've ruled out 2 of the 3 potential causes that her Mayo doctor mentioned.  This ruling out process has taken months to years...
So today we'll meet yet another doctor.  This one specializes in neurology.
One of our prayers with any new doctor is that they will KNOW Ainsley.
Not just learn her medical history... 
we want them to get to know her so they will CONNECT and CARE right along with us.   
We had one doctor that we consulted back in 2013 tell us to bring Ainsley back when she begins to fall and lose much greater muscle function--as a momma I wasn't going to just sit and wait.  Thankfully a month later we met another specialist at Mayo who treated Ainsley as if she were his own.  THAT is the type of doctor we are hoping and praying that we meet today.
We will be asking if he recommends carrier testing for muscular dystrophy and to see if he can order the specific CK test.  There are test that could determine which type of muscle is breaking down.
Any time we meet a new doctor they seem to discover something new that they are concerned about, so that is always in the back of our minds--but hopefully things have stabilized and what we have on our plate will not continue to grow.
I love many things about Ainsley, but one thing that I truly admire about her is her resiliency.  
Some call resiliency "grit" and I love that because it truly paints a picture doesn't it?  
I often say that Ainsley is a bit of a spit fire, but I think I'll add resiliency and grit to the list too! 
I know no matter what God has in store for her, she'll manage to plow through it with a smile and a big bow/dress as that is all she wants to wear these days!
I took these pictures last week when Ainsley and I were playing bubble run. 
I make the bubbles and Ainsley runs!
Thanks in advance for joining us in prayer for our sweet girl on Tuesday!

1 comment:

Angie said...

good luck today. Please let me know how it goes as soon as you find anything out.
Love you all xoxoxo