Thursday, April 23

Muscle update


For the past three weeks Ainsley has been working with a physical therapist (which she calls gymnastics) in Waco based on the recommendations of her neuromuscular doctor at Texas Children's Hospital.  She was referred primarily for toe walking and potential muscle myopathy.   

At the initial eval her new physical therapist saw concerns with toe walking, her core, upper arms and glutes...I immediately contacted her former PT in Iowa and asked for her opinion.  She shared last year Ainsley had some of these concerns and she would classify them as mild.  The following week we checked in with her Texas PT who said she would now classify Ainsley as moderate loss in all of those area....

After much prayer and talking Ryan and I felt really strongly that we needed to have Ainsley re-evaluated in Iowa by her former PT so we can get definitive answers on is there a decline in muscle function and the new areas of muscle loss.  Her new PT is wonderful--she is just missing the history of seeing Ainsley over the years which thankfully her Iowa PT has.  She knows Ainsley well.
 

The timing of this could not have been more perfect.  I already had plans to be in Iowa for work next week and I just got a ticket for Ainsley...which was very tricky, but after several calls to the airline Ainsley and I are sitting together on 3 of the 4 flights, so that is a win!

Ainsley's grandparents will meet us at the airport and after her appointment they will take her back to Illinois for some fun while I visit with several universities.  We'll then meet back up and fly home Saturday, May 2.  On a side note...when I saw this shirt recently I knew that I had to get it for my Ains--we tell her all the time she is strong and she can do it (whatever it may be at the time)!  She wore it to PT this week and when she got tired I reminded her about her strong shirt :)!

We are preparing our hearts for next week's appointments.  We know it may not be good news, but we've always felt all along that we'd rather be informed so we can prepare and provide whatever Ains needs to be successful. 

Her blood continues to show evidence of muscle breakdown, we have these new areas of weakness and she's had quite a few hard falls recently.  We are SO thankful for an opportunity to seek a second opinion from someone we know and trust, Shelley her Iowa PT.  Shelley was the one who reengaged her Iowa neuromuscular doctor when Ains turned 3 when she started seeing signs of greater weakness.  She is incredible--we know that we can rest knowing that her insights and guidance next week will be very solid.

We'd appreciate prayers for the muscle genetic test--insurance denied it initially because it was new and "experimental" and we are in the appeal phase.  We will have their final decision by May 14 and if we get not good news next week that test will be vital to us knowing what is going on with our sweet girl.


"But you, O Lord, are a shield around me; you are my glory, the one who holds my head high." -Psalm 3:3


This afternoon we had Ainsley's final eval of her speech therapy at Baylor Speech & Hearing Clinic.  Ainsley make GREAT progress this semester with her wonderful speech therapist, Ms. Julia.  One of the main concerns is fluency.  She has a large amount of pauses, but thankfully isn't showing any of the secondary signs of stuttering so that is good news.  They did want Ryan and me to become more educated on stuttering so we can support her.  For instance, when Ainsley begins to stutter, I'll often say "take a breath, I'm listening to you"...well--not the best way to handle stuttering.  We are looking forward to learning more so we can support little miss in this way.

It dawned on me on the drive home that since we are getting Ainsley reevaluated by her Iowa PT, I should see if we can get her hearing retested at the Center for Disability & Development since we'll already be there.  I knew it was a long shot--but I called anyway and the kind scheduler said "wow--we do have an opening that day at 9 am"...PERFECT timing!  I'll need to travel to another work meeting after her PT appointment, but Ryan's mom and dad are willing to take Ainsley and be with her during the hearing test so that is great news! 

I then called her old hearing aid clinic to see if her former audiologist could program her hearing aids (based on the new test results) and they said YES!  So Ryan's parents and Ainsley will stop by there before they travel back to Illinois.  SO thankful for the comfort of having Ainsley reevaluated by people who know her well and care for her like we do!

This verse came to mind late today.  This is one that I often share with friends when they are going through a rough time--and I thought it fit perfectly with God always providing for our sweet girl. 
"I am He, I am He who will sustain you.  I have made you and I will carry you; I will sustain you and I will rescue you." -Isiah 46:4

2 comments:

Terri Morris said...

Hi Michelle! Thank you for posting this update on sweet Ainsley for now we really know how to pray for her! It sounds like the good Lord is already opening doors and making a way in the details. Prayers for you & Ryan that you will have a peace about this entire situation and that you will feel HIS strength guiding you each step of the way. Love you, my friend!!
Terri

Angie said...

Extra thoughts and prayers are going out for your family. My (long ago) offer still stands... if you're interested in touring a lab that does testing on these types of disorders I would be happy to help arrange one with my former supervisor. He's world-renowned in his MD research. It's always nice for his lab personnel to put a face with the reason for their research.