Iowa day 3-Taking a break...

Tuesday was our big day at the hospital-meeting with Ainsley’s neuromuscular doctor and physical therapist.  We had a few hours free that morning so we did some homework, bought some cupcakes and visited some friends on campus before going to the hospital!

Oh my word, these cupcakes! This bakery was directly below our hotel!

Ainsley picked out the Oh Happy Day cupcakes! 

It was chilly when we went to campus! I stopped by the Housing and Res Life offices this day! So fun to catch up with former colleagues and friends! They had Ains trick or treat!

After lunch we headed to the hospital! The new Children’s Hospital was incredible!

We first met with the neuromuscular fellow and med student and gave them Ainsley’s complete history and shared our recent concerns. They did a full evaluation.

Ainsley adopted this lovely dog at the gift shop ;)!

Next we met with Dr. Matthews her former neuromuscular doctor. She is amazingly gifted and doesn’t sugar coat things. She watched Ainsley run down the halls and did a full eval and then had Shelley her former PT evaluate her. 

Then they talked for a while outside of the exam room and then came back to talk with us.

When we debriefed there were 6 of us in the exam rooms and Ainsley shared with great excitement “we are ALL girls”! Thankful for all of our doctors, but it was a special moment all women discussing our sweet girl!

They validated that Ainsley has significant motor delays. They didn’t feel like it was a  4 year gap like her TX PT had scored her but we all agreed not to put Ains through a 2 hr test to score her a few months more developed.

Dr. Matthews explained that A will likely always be on the lower end of a bell shaped curve for gross motor development but that it won’t limit her in life. She’ll just have a different way of doing things.

She said it is time to stop chasing the diagnosis. They all agreed (as have her Mayo docs) that there likely is an underlying condition to explain why her muscles are not functioning like her peers. However, we have exhausted all of the testing on the market at this time. 

This was freeing and sad all mixed in. Freeing to stop chasing every little test that is not normal but also sad that we will have to guide Ainsley through some tough disappointments in the future.

Her PT met with us for a long time talking through next steps like having A chose individual sports not necessarily group sports so she doesn’t get discouraged.

I don’t want to shield her from ALL of life’s heartbreaks but we will need to be thoughtful about activities moving forward. 

Swimming and horseback riding are good for balance and spatial awareness. She also encouraged us to get a Strider bike for balance since A still has training wheels on. All in all good advice.

They told us what to look out for (loss of function) and to contact them if that begins to happen. 

Thankful to my dad and Vicki for being with us this week! 

Ainsley is nervous about ear surgery tomorrow. She got a new pony to take with her to the hospital! We are back in TX now and are in Dallas for A’s ear drum repair surgery. This will prevent possible infection since she has a 30% ear drum rupture, allow her to swim without worrying about water ear precautions, and hopefully restore some conducive hearing loss! 

Thanks to everyone who prayed for our sweet girl and

thanks to everyone who called and texted!

Thankful for the love that many people have shown our sweet and spunky Ainsley!

Thankful God was faithful in providing a clear answer even if the answer is to stop trying to figure out the “why” and to enjoy life and max out what IS possible for Ainsley!