Monday, March 23

Living

Sunday we took Ainsley to the park for some fun!
It was a perfect day!
Ainsley liked the climbing wall the best!
and the slide!
 This sweet girl melts my heart!
When I considered this new job at Skyfactor Mapworks (working with universities to develop early-intervention plans for students) my #1 concern was Ainsley.
I said to Ryan, how can I take a new job when we have a potential muscle diagnosis looming over our heads. 
Thankfully Ryan is a voice of reason and shared that as with anything we've faced with Ainsley's medical concerns we shouldn't stop living life and get consumed by it.  
I love being a mom and also love working to help college students be successful.  So I said yes!
I made Ainsley a book to explain my new job and that I'd be working from home most of the time with some travel. 
I'm thankful for this new opportunity and am excited to be home most days to  spend time with my sweet girl!
The reason that I hesitated so much with the decision about this new job is that Ainsley's recent neuromuscular doctor's appointment was different than any other we had.
It took both Ryan and I a few weeks after the appointment to put our fingers on how we were feeling.
I think we both realized that in 4 months we'll likely finally have an answer to Ainsley's potential muscle problems because her doctor ordered a very detailed  genetic muscle disorder test.  He also said that what we thought she may have is at the bottom of his list of possibilities--he didn't tell us what was on his list of possibilities, but that is the part that got both Ryan and I.  His calm, yet detailed plan for physical therapy and this genetic testing.
We'll deal with whatever lies ahead...

In the meantime we are going to keep enjoying life!

And be aware of possible supports Ainsley may need along the way.

This is all on my mind today because we got a letter from her Houston doctor today that outlines what type of sedation she can and can't have based on her possible muscle myopathy.  It is always a shock to see that in writing.

Ainsley has some dental work on Wednesday she needs to be sedated for so we appreciated her new doctor outlining what she needs in order to be safe.

We vow to keep positive and enjoy life with our sweet, spunky girl!
I think of this verse often when I think of our sweet girl, "They will be called oaks of righteousness, a planting of the Lord for the display of His splendor" -Isaiah 61:3

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