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. 

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