Wednesday, May 24

MN-Day 5

Last night Ains and I ate ice cream, did face masks and watched the Dancing with the Stars Finale! 
We started out bright and early this morning with a hearing test. Ainsley is OVeR hearing tests. She complied, but it is not her fave. They got a very broad range of results. The right ear is relatively stable, the left ear is still declining. This is largely due to the conductive component (perforated ear drum) on top of the sensorineural loss. We meet with the ear surgeon tomorrow morning to get his advice on when to repair that ear.
We had a 2:30 pm apt with genetics so we hung out at the hospital during the day-Ains worked on some homework!
We ate at our fave restaurant again! Free kids meal with adult entrees!
I got a Greek salad today-so good!
Ainsley making silly faces!
This nice older gentleman plays the piano every Wednesday. He played several songs just for Ainsley :)! He is an author too. 
He told me about his book-I bought it on Amazon and I look forward to reading it. He had a notebook that he asked people to sign where they are from-he has met a lot of people over the years in that lobby!
Ainsley's eye doctor stopped by and said hi and danced with her for a bit! 
A fun mid-day break. The Mayo brothers felt that music was an import part of healing, so they normally have music in the lobby.
Waiting for genetics apt. 
Ainsley mainly hid in her cave and played on her iPad while I talked with her medical geneticist. He said that he will have the team re-run her gene sequence again-he thinks the answers are in her genes. He considers her a "medical mystery" kid and said 1/3 of the times they can find a genetic cause. I wished those odds were better. He said he thinks she likely has a couple of genetic conditions that would explain all that's happening with her. He said he'd be in touch. I mainly wanted to meet with him so she'd stay on the team's radar. I know this will take time. At the end of the day someone gave Ains a $1 for her ballerina dancing. She was on cloud 9!

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