Wednesday, May 4

Grateful

Tuesday was our last day at Mayo. I am grateful for many things that happened this day. We started at 8 am with labs. This is never Ainsley's favorite.  When the lab tech came to get us she shared that we were in luck...the music therapist was in clinic with them today!
Ainsley had to give 7+tubes of blood and Ryan and I each gave 5 for the research project I mentioned yesterday. Having someone play the guitar and sing to you is calming. Ainsley did great! It was probably the most calming blood draw for us too :)
We decided to do a "checker" appointment for the Physical Medical Rehab dept. This practice is in place when you want to see a specialist but couldn't fit it in when you originally scheduled. It is not a guarantee. Within 15 min of us waiting the nurse came out and asked us to come back at 1 pm. She said she couldn't make any promises but if they had a cancellation they'd see Ainsley.
I was so thankful to have a couple of hours to run to the store and get coloring books and snacks for Ains since we were going to be at the doctor all afternoon.
We also were able to quickly pack up and check out of our hotel room. 
We were back to the hospital by 12:50 and we were prepared to wait all afternoon. They came out to get us at 2:45 pm! We were so thankful!! 
These are the patient rooms-they are large and have a big couch, plenty of room. The doctor spend 1.5 solid hours with us!!  This was incredible!! He listened, taught us about why Ainsley walks/moves the way she does. He went over her labs in detail. I can't even begin to explain what a gift this is.
He decided not to do a brain MRI, he thinks the answers of "why" she had muscule mypothy will be discovered in her raw gene data. He said she has some great areas of muscule strength, but weakness in other areas. He wants her to be seen by neuro again so they can determine if they want to do further muscule testing. He gave very specific goals for her home PT in relation to strengthening her knees.
After another long day we drove back to Minneapolis for our Wednesday flight. We took Ains to The Rainforest Cafe!
We got a "few" pieces of candy for the plane...Ryan and Ainsley's bag is on the right. They accidentally got a few too many grape pieces of candy!!
We got up at 2:30 am for our early morning flight!


Thankfully Ains slept on the plane!
The Endo called on our drive home and shared Ainsley's thyroid is very large and it shouldn't be since she's well regulated. They are going to discuss Ainsley's case on Monday-a team meets weekly to discuss "interesting" cases. I'm so thankful for this high level of care. A positive-the mass doesn't appear to be concerning (cancerous) but it is large and Ains has been gagging. If that continues they will remove it. She'll call me back next week with any additional info. 

So thankful for a very informative trip for our sweet girl.

No comments: