Monday, April 29

Oil change & Olive Garden--Oh My!

Sunday after church we went out to lunch and then a local park.
When we were driving to church a light came on in my car and said I needed to change the oil.  I looked at my oil sticker and I hadn't got the oil changed in 5 months and 6,000+ miles (insert gasp from my dad at this point).  We promptly took my car in after church and the oil change place was right across the street from Olive Garden--a win, win in my book!  Ainsley had her first salad--she LOVED it!  I think she loved the dressing more than anything.  
Since we carb loaded it was time to work off some energy at the park!

Ainsley is such a dare devil--she went down the biggest slide at the park!

Ainsley had a lot of sand in her shoes so ran bare foot to the car.  She loved the feel of  the grass on her feet....she also loved admiring her new pink toes!  

Sunday, April 28

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!

Thursday, April 25

Wearily Waiting

Waiting in general is tough.  Waiting on medical news for your child is for us, 1,000 times harder.  We had to wait 5 months to see the Genetic doctor (February) and another 9 weeks to get the results (April 24) of the full genetic testing and now we will wait another 3 months to see the specialist for neuromuscular disorders (July).  
During these times of waiting—we do our best to be patient and not worry too much. 
About a month ago I decided to call the doctor that did my/Ainsley’s prenatal and postnatal care (Dr. Thoma).  I emailed her and said we needed help understanding all of these test results that we were getting back and wanted to make sure we were doing all of the right things for Ainsley as new doctors are coming on board for her care.  After several emails and a call from the scheduler we got an appointment a month later for April 26 (Ryan's birthday).
Yesterday I emailed the Genetic staff to ask if Ainsley’s tests were back.  They said it would take 8 weeks to get the results and I restrained myself for an extra week to call…so at week 9 I emailed and within minutes she said, “can you call me” I grabbed my phone and I called her right back.  When we met with the Genetics’ team in February they said, the genetic testing is expensive so they don’t order it on a whim—because 80% of the time it comes back clean—with no concerns.  20% of the time it will help to identify a disorder. 
The Genetics staff member shared that for Ainsley’s results she has some missing components of her 4thchromosome.  There isn’t a specific disorder linked to those missing links, but she reminded me that Genetics is an ever developing field.  
  She said Ainsley’s missing components is in the genetic “neighborhood” of a muscular disorder.  Pair that news with her low tone, mildly elevated CK levels they wanted Ainsley to keep the Neuromuscular appointment for July.  They had scheduled that appointment for us back in late February because (1) the wait time to see that doctor is long and (2) her blood levels were slightly elevated showing muscle breakdown.  After I got off of the phone with her, I called her back 5 minutes later and said..."is Ainsley in the 80% or 20% group".  She paused.  She said, "we don't know yet".  She apologized, but she said we need you to meet with the specialist and determine the next steps.
Although we are discouraged about this new news, we know that God is ever present.  It would be agony if we couldn’t talk this through with a doctor until July, and God knows that about us.  So tomorrow we will see the Dr. Thoma who we trust will help us to talk through all of this news (two days after we received this news).  We are thankful for the timing of this appointment.
Please keep our little miss in your thoughts and prayers tomorrow afternoon—pray that we get some reassurance and guidance in what to do while we wait for the July appointment.
I called the Neuromuscular doctor's staff today and let them know we were a local family (many families travel several hours to come to our university hospital, we are very lucky to live 10 minutes away)--so if they have a cancelation to call us and we will be right over.  I got an email from the nurse 10 minutes later saying that she has us on the wait list.  Praying that an appointment opens up soon :)!
On a random note—we normally go to Red Lobster to celebrate life events.  Don’t know why, it is a tradition that was started a long time ago with our families…so last night we went to Red Lobster to celebrate life, good doctors, a supportive family and friend system, our giggly girl, etc.  Although we were both devastated by the news yesterday, we have so much to be thankful for and hopeful for. 
I took this picture of Ainsley first thing this morning.  At times these past two days I'll get a glimpse of Ainsley and she almost takes my breath away because I can't fathom some of the things I've been reading about with these disorders happening to our Ainsley.  Weary is the word that comes to mind on how Ryan and I feel--we are ready for this roller coaster of tests and unanswered questions for our sweet girl to be behind us.

This was Ainsley this morning running to the play room at her school.
We serve a big God who has come through countless times for our sweet girl, and we hope that he will do so again for Ainsley—whatever that may look like.  Thank you in advance for your prayers and thoughts tomorrow for our sweet girl--our doctor's appointment is at 2:40 pm (Friday).