Friday, June 16

Still processing

Our sweet girl started a summer camp this week!  She is loving it!
She told us recently she wanted to work for NASA!  She loves space and loves learning about the planets--I thought this is great!  Something to pursue....she clarified for me one day last week that she wants to be a DJ for NASA workers.  Music is an important part of space travel according to Ainsley!
We went for a cool treat after camp this week at Magnolia Market!
Snow cones!
Summer fun!
Lots of things to play with!
We traveled to Austin last weekend for some fun!
Our little Texan!
IKEA fun!
We are re-organizing Ainsley's playroom--I'll take pictures when it is all done!
Ainsley loved IKEA!
This is how Ainsley takes pictures now--just silly!
We are still processing all of the info we learning at Mayo Clinic.  We asked to pursue carrier testing for muscular dystrophy since she is now having signs of protein in her urine as well as the blood markers of slight muscle breakdown in the heart.  Her Mayo genetic doctor was on board and started the process last week.  We thankfully have her samples on file at Mayo so no additional blood work is needed. We are in process with the insurance company for approval.  It can take up to 30 days for approval/rejection.  This test will allow us to know if we should more closely monitor her heart every year if she is a carrier.  Please be in prayer that God works out the details of the insurance, etc.  This genetic test (from what I've read) can be processed within weeks--so this would be a relatively quick process if we can get over the insurance hurdle.
           

Saturday, June 10

Life lately

 
Life lately = always on the go!  Here's a quick recap of the past few weeks....Ainsley graduated from kindergarten!!
     
We are so proud of her!!!
    
My dad and Vicki came to visit for the big day!
 
 
Ainsley and her sweet teacher! We were so thankful to have such a creative and caring teacher for Ainsley's first year in school!
 
That evening our church had a fun event for kids! Ainsley loved the zip line!
  
The next day after Ainsley's grad Ryan had surgery for his gallbladder! 
 
My dad, Vicki, Ains and I went out shopping and golfing so Ryan could rest! 
   
We are thankful dad and Vicki were here to help!
  
Never a dull moment with this one ;)!

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 kids...at 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!