Sunday, December 15

4 things...

I called Ainsley's Neuromuscular doctor on Friday to see if they had an up-date on her second test to explore the FSHD diagnosis.   
The nurse consulted with the pathologist a few minutes later and they  explained that Ainsley's allele A/B testing to see what type of polymorphism Ainsley has in the FSHD region will be "challenging".
They are assuming that her deletion is related to FSHD, but they need to "keep taking steps towards proving it/explaining it with testing".  This further testing will take 3-4 weeks.....
As a parent it is excruciating to not be able to do anything to stop this muscle wasting.  With her hypothyroidism she takes a daily pill, hearing loss--hearing aids, when she had head flattening we got a helmet, falling--shoe inserts....with the possibility of muscular dystrophy we have a helpless feeling.   
This week Ainsley has three doctors apts--Monday with her developmental doctor, Thursday her primary doctor and Friday we see her audiologist for her left hearing aid.  I'm thankful that we can ask her doctors what we can be doing for Ainsley during this waiting period.
All of these pictures today were from a photo shoot we did with Robyn the owner of Ruby Ellen Photography in North Liberty, Iowa.  Robyn is great to work with if you ever need family photos!  Ainsley had so much fun as you can see :)!
On November 12, 2013 almost a week after the initial blood test to see if Ainsley had FSHD I wrote down 4 things that I promised myself I would do if Ainsley's results were positive for FSHD.  I've carried the card that I wrote the 4 things on in my wallet and keep it there now to remind me of what I CAN do for Ainsley during this time.
1.  Don't doubt God--this is Ainsley's life, make it the best.
2.  Get healthy and be strong for Ainsley.
3.  Teach others about FSHD and how to support Ainsley.
4.  Always encourage Ainsley to let her light shine.



"But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint." -Isaiah 40:31



2 comments:

Robyn Rasmussen said...

Oh this is just beautiful! I will keep this sweet girl in my prayers! Thanks so much for sharing and for the sweet compliments. ..she obviously had a heart that overflows!

Robyn Rasmussen said...

Oh this is just beautiful! I will keep this sweet girl in my prayers! Thanks so much for sharing and for the sweet compliments. ..she obviously had a heart that overflows!