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”...so 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 4^thchromosome.  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).