Thank you

Thank you to everyone who has called, emailed, texted, and prayed for our little girl over the past few days.  I am still in the process of emailing everyone back--but in the meantime please know your kind words have sustained us over the past few days.

We had a great visit with Ainsley's doctor on Friday.  This fall we switched to a pediatrician, so we hadn't seen Dr. Thoma (the doctor who did Ainsley's prenatal and postnatal care for almost a year).  She listened to ALL of our questions and fears and reassured us that we were doing the right thing for Ainsley.

We shared that we didn't want to be naive about the results we are getting, but we also don't want to go overboard and panic.  She was very reassuring to say that we are on the right course--to meet with the Neuromuscular doctor in July.  She was very honest in saying that sometimes you have missing chromosomes or blood tests that are abnormal and there is no overall finding/diagnosis...or you get a diagnosis (for a muscle disorder) and there is no cure, just management.  She was encouraging us to prepare our hearts for those options.  She asked if we had ever thought about getting a second opinion at Mayo and Ryan and I hadn't talked about that--but it is something good to think about depending on the outcome of the July appointment.

Although Ainsley's CK level was elevated, but coming down (based on the March test), she thought it was a good idea to do a repeat of that blood test and also do a urine test to determine if there is any blood/muscle breakdown visible under a miscrope.  Ainsley is still potty training, so they gave us the potty tray and cup to do the urine test at home.  

We left the appointment feeling good.  Dr. Thoma wasn't as worried about the CK level since it was coming down.  She referred Ainsley back to the CDD for another speech eval based on what she saw during the appointment and told us to  take care of ourselves while caring for Ainsley (she knows we struggle with this). 

We stopped by the lab to get Ainsley's CK level checked on our way out.

Thankfully it was just a finger stick, but Ainsley still didn't like it one bit! 

So we fixed that with some ice cream!

Ainsley perked right up!

Since Friday was also Ryan's birthday--we planned for Ainsley's favorite babysitter, Lauren, to come over so we could grab a bite of dinner and then go to a triva fundraiser with co-workers and friends.  We had a lot of fun--it was good to laugh and not think too much about the day.

We got done with trivia around 9:15 pm and were going to get some appetizers before heading home.  In the car I checked my email and had an email from Ainsley's doctor at 9:30 pm...with the test results.  Her CK level had gone back up to around 318, the highest of the three readings since February.  She said that she would like to see the urine results and if they come back normal she will consult with the Neuromuscular doctor and possibly a nephrology (kidney) doctor.

Saturday morning we got up early and after several tries we were able to get a urine sample and we took it right into the lab--hopefully we will have results on Monday and know more about next steps.

We decided we need to take our mind off of things and go enjoy the day--so we went to the zoo! 

It was such a beautiful day!

Ainsley picked out the eagle to ride!

After all of the walking--Ainsley was SO tired! 

She perked up when she heard the train!  She kept saying and signing "train" when she heard the whistle.

Family picture on the train!

Ainsley has a love of Tic Tacs these days!

A quick stop off for lunch--Ryan's pick, BBQ!

Both Ryan and Ainsley fell asleep on the way home and it gave me some time to think.  Saturday was a tough day--because I kept trying to solve/fix this.  I am a fixer by nature and enjoy helping people in that way.  Ainsley's throyid and hearing are well under control with her daily medicine and hearing aid.  Speech--we are working on with her great teachers and at home.  Low tone--we go to a new park every other day to keep challenging her muscles.  But I don't know how to fix (or understand) what these blood tests/genetic tests are showing us know with the possible muscle breakdown.  Today was a better day--while at church this morning God gave me a peace that he won't leave us to carry this on our own.  He reminded me that we are in a good place (with amazing doctors), have a wonderful support system of family and friends, and Ryan and I are a good team for Ainsley.  We don't know what tomorrow holds (or the next few months), but we know who holds tomorrow.  In the meantime we are going to enjoy every day and love on our sweet girl!