Different Song, Different Verse

It is difficult sometimes to walk down the long corridor to the elevator, down the hall, and into the doctors office. It is a walk that I have become so familiar with, it almost seems like second nature. Navigating through uncharted territory and shaking hands with strangers that I try to place trust in to treat and/or diagnose my daughter. After so many specialists and doctors try their very best to exhaust all of their resources, they send us along to the next theory or specialist only to go through the same thing. Same song second verse, same as the first.

Somehow, this last walk felt a little different. I'm not sure if it was because I was walking into an office that I knew had ample resources and would exhaust resources that had never been looked at before or if I had divine peace from my Creator. Either way, this appointment was so different on so many levels. Vivien's appointment was all that we had hoped it would be and more. Dr. Kendall with Virtual Medical Practice walked out to call us to the back herself. No long white coat, no nurse that would place us in a holding cell, checking stats and vitals for the doctors quick 10 minute medical gesture; she wore a cute dress and a smiling face as well as a reassuring presence. I knew right away we would like her when she handed Vivien a plush toy that she had created herself. The Hugger-Mug has a voice recorder that says, "hello Vivien, how are you today?" As Vivien sat and played with the hair on the toy, we discussed Vivien's history, symptoms, and medications in length and in detail; something that has rarely been done before by other doctors.

This time, I never felt I had to convince the doctor that although Vivien looks so well, she has gone through some of the issues that she has, Dr. Kendall understood me and listened to what Michael and myself shared with her. She pointed out a few things herself about what she saw in Vivien and then explained things to us in a clear manner. Vivien will need to have a few very simple, noninvasive tests performed before we can formally diagnose her with anything. She will be part of a clinical trial to test her enzyme levels. We are so excited for this because it is free of charge and is a procedure on the forefront of Mitochondrial Disease testing. We will also need some blood samples and a urinalysis. Vivien has a lot of the clinical findings of a child with Mitochondrial Disease, however, Dr. Kendall doesn't want to make this diagnosis without precise testing. So, we will have to wait anywhere from 1-3 months for the results. After the results are in, we may start Vivien on what is called a MitoCocktail. We will wait once again for lab results. Honestly, waiting is not my best quality. 

So, it rings true, someone out there has seen what I have for more than a year now. Someone out there feels we made the right decision in chasing this unicorn. Someone agrees that our daughter deserves the very best treatment for her symptoms and the things that plague her, so that she can live a seemingly healthy life. For this, I am incredibly grateful. Michael and I discussed on the 6 hour drive back home, why God has not answered our prayers as quickly as we had hoped for in regards to a diagnosis for Vivien. We strongly believe, God wanted to show us, that Vivien would be okay because she is His child, but most importantly He wanted to show us that we would be okay because we too are His children. Who knows, a diagnosis on this level may have devastated us beyond our limits in months past. However, God has since equipped us with His divine and infinite wisdom to consider the task at hand a blessing and not a curse. Time is often our best friend and our worst enemy all-in-one. I am learning...slowly, that all of this waiting will reveal things I never knew existed inside of me and my family. As impatient as I have been in this process, God has still granted me the desires of my heart and loves me despite my stubborn and relentless ways.