Saturday, April 30

Finding treasure in the trial

I shared this quote earlier this month, and am committed to remembering this as we journey into the next few days.  I never imagined this path for our daughter when we were taking parenting classes before her birth.  Never imagined we would exhaust most of our free time and energy devoted to doctor’s appointments and worry about the “what ifs”.  There is not a parenting book that would have appropriately prepared us for this medical journey we’ve been on with Ains.  I have also been in awe of the strength and spunk of our daughter.  I didn’t expect her to have the boldness, strength, love, care and spunk this early in her life.  Her light has not been diminished by all of this and for that I am forever grateful.

Well family and friends the day is finally here.  Today we will leave bright and early and fly to Minnesota for clarity and answers for our sweet girl. As many of you know we decided to take Ainsley back to Mayo Clinic in Rochester, MN to get clear direction on what to do with some new issues and complications with some of Ainsley’s on-going conditions.  **For this post I used pictures of when Ainsley was strong, spunky and brave for her doctor's apts, because I know she'll have that same spirit this week!**

We will meet with three specialists on Monday and one appointment for blood work—ENT for Ainsley’s ruptured left ear, continued decline in hearing in the left ear and care for her right ear where her ear tube seems to be on its way out and that is how her left ear got ruptured. 

We’ll meet with endocrinology to seek advice for why Ainsley’s thyroid numbers have jumped around so much over the past year and why her thyroid is enlarged to the size of it being classified as a goiter while her medicine is well regulated. We’ll also consult with them on her vocal cord nodules and recent news of her lacking full breath while speaking. 

We’ll also meet with the genetics team again to explore possible MD carrier testing.  The muscular dystrophy testing that we did this past year (which came back negative—thank you God!) didn’t cover carrier testing.  Some of Ainsley’s low tone could be linked to being a carrier of MD if that is the case we’ll need to monitor her heart each year.

The one appointment I have not been able to secure was a PT evaluation.  Despite multiple calls from me, Ainsley’s doctor calling and writing a note—her file still hasn’t been reviewed by that specific team at Mayo.  I was so disappointed when I called them yesterday to check in on that appointment.  **Update--the Physical Medicine & Rehab department called late Friday and said the want to evaluate Ainsley--two separate appointments with their specialists, blood work, and a possible MRI to evaluate muscle (this is on the books, but tentative until they evaluate her).  The BAD news is they couldn't get her in this trip--they have this scheduled for a Thursday later this month.  We just can't swing another trip.  I am going to pray that we can some how weave in one of the appointments they recommended with the main doctor on Tuesday. 

Ainsley has been feet slapping, not heel striding and doing a lot of crossing in of her feet and knees at times.  This is new.  We had two TX doctors tell us over the past two months these signs could be due to a miscommunication from her brain to her feet.  Pretty unsettling.  As I was praying about this yesterday I had a peace that even though we don’t have this on the books, God will work it out.  We’ve done all we can and if the doctors see a concern on Monday they can advocate for one of their colleagues in neuro or PT to see Ainsley.  That is what I will trust in.

I wrote down this quote recently, “Find treasure in the trial”.  How simple and so powerful.  This is what Ainsley does naturally.  This was Ainsley getting a cardiac echo when she was 2.5 years old!  They wanted to sedate her to do the test, and I said lets give it a try with out it.  She rocked the test--with a movie and a sucker, she got it done!

She knows we will go to the Mall of America this weekend and ride lots of rides and have fun and she also knows that Monday & Tuesday will be spent at the hospital. 

She will find joy in the toys in the waiting area, riding the fast elevators at Mayo, running around the lobby area—meeting new friends.  She doesn’t feel the weight of this all, and that is such a blessing.  We are doing to do our best to find joy over the next few days. 

We appreciate your prayers for clarity in these medical issues and we will continue to boldly pray for answers on her muscles specifically.

“Commit your way to the Lord, trust in Him and He will act”  -Psalm 37:5

Pure joy!

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