Tuesday, May 31

Mayo-day 1 appointments

We started out our day with blood work, bright an early at 7 am. Ainsley rocked it! No tears! This is a welcomed change!!  She got to pick out a prize after!
Next up PT eval at 8 am. She worked hard and the PT identified several areas we could work on at home. She noticed weakness in different areas than her local doctor. She did not agree Ains would benefit from feet bracing. Her local PT highly recommended this option.
We then saw her ENT and went over the pre-surgery info. Next up the Neurologist who evaluated Ains and recommended we do both the muscle EMG and muscle bioposy. This was the same neuro dr that evaluate Ainsley two years ago.
Then lunch and dancing in the lobby.
Popcorn snack! Dad and Vicki have been with me during the apts today.
They added on a 2:30 pm surgery consult for the muscle biopsy so I'm thankful they had a movie to keep A occupied. We met the surgeon who will be doing A's muscle biopsy tomorrow. I thought we were doing a fine needle biopsy....the surgeon explained they would need 2 cm of A's muscle. I wanted to fall out of my chair. The neurologist also wanted a skin biopsy to do genetic testing on-good news for both of these is we'll get the results in 2-4 weeks. I was shocked about the 2 muscle sample and after the surgeon left the surgery nurse, Penny, explained who the surgeon was-Dr. Moir. He's done several complex conjoined children operations. Praise the good Lord! So thankful God always provides for my sweet girl in ways I couldn't even imagine to pray for. If he can separate conjoined babies, I will trust him with my precious Ainsley for this muscle  biopsy. Ainsley will have a LONG day of procedures tomorrow-I'm beyond thankful that they were able to get these two muscle tests packed into a busy day of tests.

Monday, May 30

We arrived in MN!!

Sunday morning we left the house at 5:30 am and drove to the airport! Ains was so excited it was "Minnesota day"!
A did great on the plane!
While we waited for our plane she drew...
And got her ticket ready!!
So thankful for Larry and Linda-they picked us up and took is right to the Mall of America for lunch and rides!
A was thrilled!!!




At the end of the day Grammie bought Ainsley some purple cotton candy. It was like gold to Ains-she LOVED it!!!
Monday bubble time!! We had slight difficulties finding the park. I had mapped to what I thought was a beautiful park....it turned out to be a trailer park in the middle of the country in MN with no playground equipment :(.
We found a local school playground and had some fun!
This girl loves her Grammie!
The school had a large map of the USA!
Snack time at Target!!!

Saturday, May 28

Return trip to Mayo Clinic: Peace


Peace.  That’s what we are seeking with this return trip to Mayo Clinic.  For those who know us well, they know that we’ve been on a journey since February 2013 to figure out why Ainsley was starting to show signs of muscle weakness and around that time her left ear started to decline (she had normal hearing in her L ear at birth). 

I think part of me feels numb because I feel we are on the verge of finally getting answers for Ainsley’s hearing decline and muscle weakness.  I was so busy with the details of the trip—coordinating 7 different appointments within a short window before the busyness of the summer begins— June orientation, July first generation program, and August kindergarten starting…that I forgot to pause to consider what the outcome of this trip may be. 

As our bags are packed tonight and we think of flying out early tomorrow morning to MN I pause to reflect on this trip and the word that comes to mind is PEACE.  There is some sense of comfort from knowing what’s going on with her muscles and her ears that we are desperate to define.  We need that definition to so we can get a clear plan for Ainsley moving forward.

Ainsley and I will fly to Minnesota on Sunday (Ryan is going to stay in TX since this is one of his busiest times of work right before summer orientation) and have a few days of fun before her appointments Tuesday-Thursday.  This trip will be focused on muscles and ears. 

Tuesday we’ll have her muscles evaluated by a neurologist and a physical therapist who will determine if they see evidence of muscle disease that needs to be further evaluated by a muscle biopsy or another test which will be done on Wednesday. 

Wednesday Ainsley will be sedated and have ear cleaning, possible repair of her left ear drum, hearing test and MRI of her ear structures.  Thursday will be a wrap up morning of appointments getting the results from her Wednesday tests before we fly home to TX late that afternoon.


As I am getting home and work life in a good place so I can fully focus on Ainsley and her Mayo trip I start thinking of the fears that I have:  not being able to communicate with Ainsley for a while if her hearing continues to decline—should we start sign language again, will she hear her baby cry in the middle of the night when she is a momma, fear of the future—with muscle disease I feel there is a constant presence of holding your breath for when new symptoms arise, will there be greater pain for Ainsley with her muscles, creeping doubt of can we handle this, location of doctors who can provide the most excellent care for Ainsley, advocating vs. overdoing medically, weary of the possible road ahead, the list goes on. 

I then think about Ainsley and how I’ve prepared her for this return trip to Mayo—I’ve explained that she will get to do an obstacle course and show how strong she is (translation:  physical therapy eval and neurologist consult for muscle weakness) and that she will be have her ears cleaned and checked while she is asleep (translation:  under general sedation Ainsley will have her ears cleaned, left ear potentially patched depending on the size of her perforated ear drum, sedated hearing test, and MRI of her inner ear structures). 



Ainsley responds to all of this by saying, “It won’t hurt-right because I’ll be asleep?” and “If I have to give blood again, can I get a Target toy?”  She is like a breath of fresh air to me—she assures me that God knew what he was doing when he formed Ainsley.  He knew she would have challenges, but he also gave her a spunk and zest for life that would match any obstacle that would be thrown her way.  I’ve packed her sparkly gymnastics suit for her PT eval—because that’s Ainsley, she doesn’t fear she just keeps moving with all the sparkle and spunk that she can summon!


“Do not be afraid, for I have ransomed you.  I have called you by name; you are mine.  When you go through deep waters, I will be with you.  When you go through rivers of difficulty, you will not drown.  When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.  For I am the Lord, your God, the Holy One of Israel, your Savior”. 
–Isaiah 43:  1-3

Wednesday, May 25

Thankful

Earlier this week I woke up one day at 5 am with my mind racing with worry and questions about Ainsley's hearing and muscles.
I got up and read, prayed and wrote about our upcoming trip to Mayo-we fly out this Sunday. 
Several of my concerns were about how Ains would handle all of this when she gets a bit older and could fully understand. Part of that fear came true today during an eval by our new school district that Ains had at her current school. We didn't know that Ains was being evaluated today or I would have been there. She told her teacher that she felt "embarrassed" as a result of the observation today :(.  Broke my heart hearing this. The woman observing A was a deaf/hard of hearing specialist who was trying to just observe and not engage A.  Ainsley loves to engage with everyone so maybe that was part of the disconnect.
I was relieved to know that her teachers and the administrators at her current school were so encouraging and supportive of Ains today. They advocate for A just as strongly as we do. So thankful for them! I sent a quick note tonight to the Special Education coordinator at her new school explaining how Ains felt today and asking to be notified in advance of future observations.
The day that I woke up at 5 am earlier this week consumed with worry for Ains...I had a meeting that morning on campus with a colleague. At the end of our meeting I mentioned I would be out of the office next week due to the Mayo trip. She kindly ask me to tell her more...
She then shared her story. She too has a hearing loss and wears an aid. She shared her experiences as a young girl Ainsley's age and shared how her family advocated for her. She also told me the mean comments from kids who are insensitive will come in time, to be prepared. I was in tears several times when she spoke-mainly because I was in awe that God answered my prayer for peace and understand in some way through this interaction. I just kept saying what a blessing she was to share this with me-she doesn't normally tell people about her hearing loss. I was so thankful for her opening up and providing a window into what Ains will likely face in the years to come. What an encouragement she was! I left the meeting thanking God for his timing of providing the much needed encouragement from someone who has walked this journey before.  Our God is in the details and I'm thankful for His care for our sweet girl.



Monday, May 23

Art & popcicles

Sunday afternoon A did some "school stations"-worksheets, flash cards and a craft station. She loved it. Here is Ains deep in thought painting :).
Today A picked out her entire outfit including a cape!
Tonight Ainsley rode her bike around the block and then had a popcicle to cool off! She also discovered orange Gatorade tonight and loved it! Just in time for the hot TX summers!

Sunday, May 22

Weekend fun

Friday A had her speech screening at her new elementary school-1.5+ hours! She did great! She proudly wore her "I love speech" sticker all day :)!

Saturday morning we finished the yard project. Ains helped us! I had to explain she didn't need to pack for the journey to the front yard :)!
Ready to help!!
Our neighbors found a baby diamond back snake in their yard Thursday evening!!!!! They are poisonous!!!! 
We shook all of the trees before we began and were very careful!!!


Packing for our Lowe's trip!
Decisions...
Decisions...
A fun and busy day!!