Monday, January 26

Back to reality!



Its been a bit of a whirl wind the past week as we've settled back into life at home and work after our  Disney trip.
Ainsley did great on the plane ride home!  She loved listening to music!
I had promised myself that I wouldn't worry about this over the holidays and Disney...but traveling back from Disney we had a long 3 hour flight. When you are in it, it's hard for me to initially see that God is present in each of Ainsley's medical challenges. I always get there but it can take hours to days and weeks for our more scary concerns. As R and A were watching movies I had a lot of time to think (after I read my celebrity magazines :)!  High above the clouds, listening to some good music and flipping through pictures on my phone I saw the gentle and faithful hand of God during each of Ainsley's medical concerns over the past four years.
I needed to be reminded of this as we embark on getting some clarity from her new doctors on (1) why her CK numbers are remaining consistently elevated for the past 2 years, we'll do this in Texas and
 
(2) her continued hearing decline--this further genetic testing will be done in Iowa. They started the new genetic work up in early January and we should know the results in 6 months. Ainsley was tested several years ago on a panel that looked at 60+ causes of hearing loss and they now have a new genetic panel that evaluates 90+ causes. It's a tedious process and we are so grateful that her doctors in Iowa are continuing to help make sure we have as much info as we can to provide care for Ainsley.

This was a picture of Ainsley and Ryan in a hotel in MN the night before we met her genetic Mayo doctor.  I'll never forget this because Ainsley thought this was the BEST night!  Pizza and staying up until midnight=total excitement for a then 3 year old...Ryan and I were stressed and exhausted--perspective right :)?

That doctor recommended three possibilities for her CK being elevated--we've tracked down everything (including having her heart screened--which came back perfect) and the FSHD muscular dystrophy (which we thankfully ruled out in June), so we are now down to our last test.  We just need to find a doctor in TX who will order it for us.  


It sounds simple, but not everyone is open to doing gentic carrier testing. I have an appointment for her in March in Houston and in July in Temple, TX. I'm praying that one of those doctors will be open to helping us figure this out.  **This is Ainsley with Ms. Emily.  Ainsley was SO excited to have dinner and hang out with Ms. Emily recenlty when Ryan and I grabbed dinner.  When we came home Ainsley tried to push us back out the door!  That is a GOOD sign!** 
It is important to us to get closure on this because if Ainsley is a carrier for a specific muscular dystrophy it can (1) effect her future children--we want her to have information on how they could be effected-MaNy years down the road...

(2) sedation procedures can be more challenging so doctors need to be informed of her condition and (3) most pressing we will need to have her heart checked regularly as girls who are carriers can see changes over time to their heart function. 

**This is Ains with her sweet friend Claire at the children's museum this past weekend.**
This has been on my mind constantly since her blood is still showing elevated signs of muscle break down. SO now that we are back from vacation I'm refreshed and ready to walk with Ainsley and help her to get to the bottom of this...all the while trusting and relaying that God has a plan for our sweet and spunky girl!

1 comment:

Angie said...

Shelby I am praying that you get answers soon. this has been a long, long road for the three of you. Ainsley is so precious and perfect. Lots and lots of love