Saturday, April 30

MN

We left the house at 3:30 am this morning for our early morning flight to MN! I got 4 hours of sleep the night before due to my work trip to Virginia so I was dragging today :), thank goodness for caffeine!
A was tired but didn't sleep on the plane...Ryan did :).
We arrived in MN!

We went right to the Mall of America!
Lunch at Hard Rock!
Rides! Ainsley had been awake since 3 am and was still going strong mid-afternoon!


We went to the hotel and slept for 3 hours!  Back to full energy and ready to go!
No time for dinner since we wanted to get back to the rides so we got smoothies and then got appetizers at Hard Rock after the rides closed at 10 pm :), it's going to be a late night!!
Thankful for a fun day!

Finding treasure in the trial


I shared this quote earlier this month, and am committed to remembering this as we journey into the next few days.  I never imagined this path for our daughter when we were taking parenting classes before her birth.  Never imagined we would exhaust most of our free time and energy devoted to doctor’s appointments and worry about the “what ifs”.  There is not a parenting book that would have appropriately prepared us for this medical journey we’ve been on with Ains.  I have also been in awe of the strength and spunk of our daughter.  I didn’t expect her to have the boldness, strength, love, care and spunk this early in her life.  Her light has not been diminished by all of this and for that I am forever grateful.




Well family and friends the day is finally here.  Today we will leave bright and early and fly to Minnesota for clarity and answers for our sweet girl. As many of you know we decided to take Ainsley back to Mayo Clinic in Rochester, MN to get clear direction on what to do with some new issues and complications with some of Ainsley’s on-going conditions.  **For this post I used pictures of when Ainsley was strong, spunky and brave for her doctor's apts, because I know she'll have that same spirit this week!**

We will meet with three specialists on Monday and one appointment for blood work—ENT for Ainsley’s ruptured left ear, continued decline in hearing in the left ear and care for her right ear where her ear tube seems to be on its way out and that is how her left ear got ruptured. 

We’ll meet with endocrinology to seek advice for why Ainsley’s thyroid numbers have jumped around so much over the past year and why her thyroid is enlarged to the size of it being classified as a goiter while her medicine is well regulated. We’ll also consult with them on her vocal cord nodules and recent news of her lacking full breath while speaking. 

We’ll also meet with the genetics team again to explore possible MD carrier testing.  The muscular dystrophy testing that we did this past year (which came back negative—thank you God!) didn’t cover carrier testing.  Some of Ainsley’s low tone could be linked to being a carrier of MD if that is the case we’ll need to monitor her heart each year.

The one appointment I have not been able to secure was a PT evaluation.  Despite multiple calls from me, Ainsley’s doctor calling and writing a note—her file still hasn’t been reviewed by that specific team at Mayo.  I was so disappointed when I called them yesterday to check in on that appointment.  **Update--the Physical Medicine & Rehab department called late Friday and said the want to evaluate Ainsley--two separate appointments with their specialists, blood work, and a possible MRI to evaluate muscle (this is on the books, but tentative until they evaluate her).  The BAD news is they couldn't get her in this trip--they have this scheduled for a Thursday later this month.  We just can't swing another trip.  I am going to pray that we can some how weave in one of the appointments they recommended with the main doctor on Tuesday. 

Ainsley has been feet slapping, not heel striding and doing a lot of crossing in of her feet and knees at times.  This is new.  We had two TX doctors tell us over the past two months these signs could be due to a miscommunication from her brain to her feet.  Pretty unsettling.  As I was praying about this yesterday I had a peace that even though we don’t have this on the books, God will work it out.  We’ve done all we can and if the doctors see a concern on Monday they can advocate for one of their colleagues in neuro or PT to see Ainsley.  That is what I will trust in.

I wrote down this quote recently, “Find treasure in the trial”.  How simple and so powerful.  This is what Ainsley does naturally.  This was Ainsley getting a cardiac echo when she was 2.5 years old!  They wanted to sedate her to do the test, and I said lets give it a try with out it.  She rocked the test--with a movie and a sucker, she got it done!

She knows we will go to the Mall of America this weekend and ride lots of rides and have fun and she also knows that Monday & Tuesday will be spent at the hospital. 

She will find joy in the toys in the waiting area, riding the fast elevators at Mayo, running around the lobby area—meeting new friends.  She doesn’t feel the weight of this all, and that is such a blessing.  We are doing to do our best to find joy over the next few days. 



We appreciate your prayers for clarity in these medical issues and we will continue to boldly pray for answers on her muscles specifically.

“Commit your way to the Lord, trust in Him and He will act”  -Psalm 37:5

Pure joy!










Monday, April 25

A few more days...


We are prepping for our Mayo trip.  One thing that has been extremely helpful is this book that I made with a summary of all of the important tests, results, etc for Ains over the past several years for the specialties we are seeking clarity on.  I have an identical copy that is unbound for the doctors--I can give them hard copies of anything they need.  We have found this to be helpful at Mayo to have any of the records they need at the ready so we can use the past info to guide the future.  I went a little over board with the tab system--but I wanted to make sure I could find things quickly in the 147 pages :).


God continues to provide for this trip--I have been haunted a bit by two doctors telling us recently that "her brain doesn't seem to be communicating accurately with her feet"--both her PT and a pediatric podiatrist said this to us in March and April. 

 I called Mayo to add on a PT appointment and they said they would need a referral to evaluate her.  I said, "alright, thanks" and hung up the phone thinking that's a no go.  Trying to get a referral from Ainsley's pediatrician can be very challenging.  Most of the time we need to make an appointment, go through the process, etc.

I understand that is they way it needs to be, but I thought I'll give it a try. I called and left a VERY long message with the message center at her pediatrician's office. 

The woman who took my call was kind, gracious and made sure to get everything I was asking her down in the message.  I explained we did the PT eval at our local children's hospital--but we walked away from that eval with nothing in hand other than an overall diagnosis of hypotonia and a recommendation to restart weekly therapy.

The PT pointed out several areas of concern to us verbally in the eval, but nothing in writing after.  We need more details to be able to full understand what therapies Ainsley needs and if she needs any supportive bracing to help her feet. 


LONG story short--Ainsley's pediatrician wrote a letter to Mayo explaining why we were requesting the PT eval and as a result of that they called her and are in the process of seeing if the Physical Medicine and Rehab department at Mayo may be a good fit for Ainsley. 

They are interdisciplinary and take complex cases.  Ainsley doctor called me twice last week to say that she has been in phone conversations with Mayo as well as they are trying to get everything they need to make a determination on what sub-specialties she may need to see within this department.

I called the department on Friday as a gentle check in to let them know we are flying to MN in a week to see if they needed any additional info to make their decision to see Ainsley.  The staff member that was working directly with Ainsley's pediatrician talked with me and was so kind and understanding.

He said we will do everything we can for your daughter--they are just trying to get all of the info to the doctors so they can determine what may be best (if there is anything further the doctors there can evaluate for and if yes, who does she need to see).  He said he would be in touch with me early this week. 


After I got off the phone with Mayo on Friday I was reminded of this verse from Exodus 14:14 "The Lord will fight for you; you need only to be still."

I am hoping and praying that they will see Ainsley.  What a gift that would be to have clear and definitive answers on what areas we need to work on in regard to her muscles. 







Our hopes for the Mayo trip:  (1) education--we want to learn about the complexities and the ins and outs of all of Ainsley's conditions so we can help to provide for her, (2) peace knowing we are thoroughly providing for Ainsley and (3) clarity for next steps with ears, thyroid and muscles. 

Sunday, April 24

Random quick pics!

Ains and I had a picnic breakfast recently! She thought it was the BeST!
Oh Ainsley-she loves to try on my glasses!


Sugar...stays asleep most of the time while Ains dresses her up!
This day Ains picked out her own outfit!


Sweet girl!
We had a CASA dinner this Thursday evening and I took this pic as we were driving out into the country. A beautiful evening!
Mini palm tree-about Ainsley's size!
Church today!
Fun weekend!