Monday, May 29

MN-days 6-8


Wednesday evening Ryan's parents joined us in MN.  We met them for a late dinner at the restaurant next door to the hotel.  Larry carried Ainsley back to the hotel because she was sleepy, it was a long day!
Ainsley did more dancing in the lobby on Thursday--this was a piano player from Georgia.  He was very kind.
Thursday morning we met with the ear surgeon to talk about Ainsley's ear drum repair.  He was able to remove Ainsley's right ear tube since it had been out but still in the ear canal for several months.  She was a trooper.  The surgeon has 6 year old twins so he was great with Ainsley.  He knew how to keep her engaged and answered all of my questions.  We are planning to do her ear surgery next spring after cold/flu season.
After her morning appointment I got a call from the cardiology office--they scheduled Ainsley for an 11 am and 12:30 pm heart test and a 3 pm appointment with the cardiologist. These tests were based on the blood work that her neurologist ordered.  We have done CK tests for several years--this measures that amount of muscle that is breaking down in the body.  For the first time her neurologist ordered a more specific test to tell what type of muscle is breaking down in Ainsley's body--that test showed that it was her heart muscle that was breaking down at a low level causing her CK-MB level to be slightly elevated. 
God has a way of always providing for our girl.  We were originally scheduled to meet with her neuro doctor (who ordered the muscle/heart test) on Thursday.  I had a feeling that he may want to do further testing and I wanted to make sure we could fit it in this visit.  I asked to move up that appointment and on Monday when I asked they were able to get her scheduled for a last minute opening on Tuesday.  That appointment then made it possible to get her blood work back Wednesday and then get scheduled with a cardiologist on Thursday.  I do not take this for granted for one second.  With her specialists in TX it would take months to get an appointment with a specialist.  I am forever grateful for the coordinated and timely care that Mayo provides.
After the EKG we did a cardiac echo.  The technician has 4 kids so he was great with Ainsley.  He took about 30 minutes of images.  He mentioned that their process is very thorough.  The last cardiac echo that Ainsley had was 4 years ago so I was thankful they were getting an updated look at her heart.  I prayed a lot during this test.  I also thanked God for a quick turn around on results.  We finished up this test at 1:45 pm--went to a late lunch and then back to meet with her cardiologist at 3 pm.  We are thankful we didn't have days of stress and worry waiting on the results.
While they were reading her results they had Ainsley rest and watch a movie.  She got to pick out a movie and she picked Frozen.  The cardiologist we met with that afternoon was wonderful.  She was a University of Iowa grad--so was her neurologist, so it is always fun to have that connection!  Her cardiologist explained that her images looked good--thank the good Lord!  She did explain that her muscles are not normal (because they have been breaking down at a slow rate for several years) and the heart is a muscle so she wants to check her CK-MB (the heart breakdown rate) every year.  If next year her numbers are only slightly increased then we'll keep monitoring it but if it is more grossly elevated then we'll do further testing.  She said the future is unknown--will her heart further breakdown at 18, 40, etc.  She told us what signs to watch for--fatigue, not wanting to be active, etc which would be signs of heart decline.
God always seems to meet big and small needs--one way that he provided last week was through kind people that made Ainsley's day.  One night at dinner our waitress asked Ainsley to dance with her.  It made her night.
Friday morning we had a meeting with Physical Medical Rehab--her PMR doctor is amazing!  He mentioned A's ferritin levels were low--this can cause really restless sleep among other things.  He recommend a good iron supplement. He also wants her to start OT & PT and get custom inserts for her tennis shoes to help with stability and alignment.  Lots to coordinate with all of that back in TX--so we'll be working on that over the next few weeks.
Friday night we went to the mall to walk around--Linda rented Ainsley one of these animals to ride around the mall.  She loved it!  She may have ran into several things during the 20 minute ride rental :), but she had fun!
Friday night we went to get quick hair cuts--Ainsley wanted to keep some of her hair to "show her kids one day".  I tried to explain that was a practice that parents did several years ago, but that she has an on-line baby book so no need for hair...The hair stylist was so sweet.  She said, she'd get Ainsley all set with a memory card.  In full disclosure, I shared that this was likely Ainsley's 30th haircut, but I appreciated her kindness :)!
All ready to show Ainsley's future this point she wants 3 kids. 
Saturday we left the hotel at 7 am and traveled to the airport for our flight home.
Thankful for a plane with a tv!  Ainsley got to watch a couple of movies on the flight home!
On the flight home the reality of Ainsley's muscle test started to settle in.  I don't want to let this news consume us with worry, but I also don't want to ignore the fact that for some reason her heart muscle is breaking down.  My sweet girl's plate is already full, adding this concern is too much.  It never crossed our mind that her heart could be impacted.  Tonight Ryan said that her CK (general muscle breakdown level) could have been the heart all along.  We won't know for sure until we have a comparison blood test in 1 year... or 6 months if I can convince one of her doctors that we'd like to get this earlier.
Back in TX and home by late Saturday evening!  I am so thankful that Ainsley is a good traveler--she is also fun to travel with.  She finds joy in just about anything :)!
We did lots of yard work Sunday/Monday--with me being gone and Ryan's recovery our yard looked horrible.  I went out to put a new wreath and flowers out for Memorial Day and 2 hours later had de-weeded our flower beds.  Thankfully Ryan is feeling better so he was a big help too.
Ryan and I went to a wedding on Sunday night of a sweet couple in our life group at church.  It was a beautiful wedding.  It was a fun night out with friends!

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!

Tuesday, May 23

MN-Day 4

Breakfast st he hotel!
Homework while waiting on the doctor. We saw a new neurologist today. He graduated from the University of Iowa and has extensive research and knowledge on many muscular disorders. He decided to check a different kind of CK level on Ainsley-on that breaks down the muscle wasting in 3 areas. More blood work.
Ainsley ROCKED her blood work today. She was such a big girl! They brought 3 people to help again, just in case. She was so proud of herself!!
We celebrated with a Shirley Temple and swimming!

Monday, May 22

MN Day 3

We started out at 7:30 am with lab work. It took 3 staff members to help get the blood work-at times she does great and sits by herself in the chair and does her blood work. Other days (like today) she fights-but we got it done!
Ains got the perfect book from the book man while she was waiting in the lobby. Ains loves legos!
We met with two endocrinologists. They decided to up her dose a bit because her TSH was a bit elevated. Her thyroid is still enlarged but they didn't need to repeat the ultrasound since we just did one in February. Looks like will will just need to do that once a year unless it is growing rapidly.
We walked to Victoria's for lunch-Ains said it was the best ever!!
Love my girl!
Ains asked around for "power" ;)!
Afternoon-a 2 hr eye appointment! Long story short her eyes look great! Praise the Lord!! He mentioned rods and cones in the eyes and side vision-she could have some areas of darker vision but no eye problems!!
I promised Ains ice cream after her full day!
Dinner! After eating out for 3 days straight we are a little tired of we went grocery shopping for PB & J and other goodies to have a quick meal at the hotel once a day.  
Ainsley's cart was the perfect size!