You are peace

One of my favorite songs right now is “Forever Reign”.  

We were signing it the other day in church and I was especially struck by the verse “You are peace, you are peace, when my fear is trembling”. 

As I look back over the past few months, we have been sustained by the grace of God day after day as we continue to make decisions about testing for Ainsley.

We got a call from the genetics doctor at Mayo about a week ago.  He said that he consulted with some of his colleagues and he recommended to do a cardiac echo for Ainsley since her CK levels have been elevated over several months.  

The CK level can be elevated due to general muscle breakdown or heart disease.  He said not to worry, because he isn’t seeing any clinical concerns for heart disease he just wants to make sure with a ultrasound of her heart.  

  We agreed 100% so we are working with our local doctor to schedule that—hoping we can get Ainsley scheduled soon.

He also mentioned that if the cardiac echo comes back fine he then wants to explore testing to see if Ainsley is a carrier of a muscular dystrophy that is normally seen in boys. 

Ainsley could be a carrier and have elevated CK levels, but not see any effects until she has children of her own.  He said this could explain her elevated levels of CK.  Ryan and I talked and we feel it is important that Ainsley and her future spouse have this information should they want to have children one day.  So we will pursue that testing if needed.

Ryan and I got our genetic testing done two weeks ago and we should hear back on the results within the next week.  This will let us know if we are missing the “page” of our chromosome four like Ainsley.

As we wait for these next round of tests we will keep enjoying life with Ainsley and praying for sound medical advice and quick test results.

Ainsley has been so active lately!

She loves to run and jump and climb!

And she is loves her daddy!!