Mitochondrial Disease Awareness Week

This past week was Mitochondrial Disease Awareness Week September 18 - 24. Mitochondrial Disease (Mito for short) is a group of disorders that affect the Mitochondria (Energy Cells) of our body. People with Mito,  are not able to convert food they eat, into viable energy and oxygen their bodies need. The disease is accompanied by a myriad of symptoms that literally do not fit a common mold. Numerous body systems are effected causing different levels of severity in those body systems. The facts of Mito are often grim and difficult to understand. Facts and Stats say:

Every 30 minutes a child is born that will develop Mitochondrial Disease by the time they are 10. Nearly 1,000 - 4,000 children are born a year with Mitochondrial Disease. 80% of children diagnosed with Mito by the age of 5 will not live to see the age of 20. Mitochondrial Disease is as common as all childhood cancers combined and just as deadly.

These are statistics that I can not escape. The thoughts of the last two sentences from the line above haunt me; 80% of children diagnosed with Mito by the age of 5 will not live to see the age of 20, Mito is as common as all childhood cancers combined and just as deadly.

I waxed and wained this week about writing about Mito Awareness and Vivien, because we are not certain this is in fact what she has, but it is a definite possibility and one that has given us a clinical diagnosis thus far. I try to think maybe all of Vivien's symptoms are just a fluke and with time, like many doctors have said, she will "out grow all of her symptoms." She is doing so well now compared to where she has been. However, there is an affirmation that resonates and lingers with me still; Vivien is and never has been like many other children her age. Her fight for life began early and she has fought very hard. As I type this, she is again sick with strep throat and an ear infection, not sleeping well at night and screaming out as if in pain a few times a day. She's restless, cranky & on edge, running around and smiling one minute and crawling in my lap the next.

Two weeks ago we walked into a doctors office to hear words like; uncertain, stable, & progressive. Difficult words to hear, even more difficult to comprehend. Although, as of right now, we are not certain of this diagnosis, I feel the tests will reveal what I have for so long thought was going on with our sweet Vivi Mae.

We stand on the fence. On that fine line of yes or no, certain & uncertain, progressive & stable, confirmed or unconfirmed. We will soon walk over that gray line to find a more black & white picture. Tests will give us answers that will give us more confirmation & more uncertainty.

Reading other blogs by Mother's that live Mito day-to-day with their children, has given me a better sense of how this horrible disease affects the lives of many families, families like; Jack's, Nathan's, Hudson's & Gavin's. More times than often, I feel as if I am reading my own words and experiences. Many families living our day to day and often times under far worse circumstances. For this reason, I knew I needed to write about bringing awareness to Mitochondrial Disease.

Less than 1% of Health Research Funds go towards the research for Mitochondrial Disease. Such a sad and stark reality. Raise awareness, Raise support, Raise your voices to let the adults, children, and families effected by this horrible disease be heard.

I firmly believe, stand for what is right, even if you are standing alone. Alone is where many of these families, ours included feel they are. But, with our support and advocacy, that small voice will rise to the surface causing a rippling effect that will carry on those voices, so that in hope more research can find better treatments and possibly a cure. Visit United Mitochondrial Disease Foundation or MitoAction to learn about ways to give.

Lean On Me...

I am a firm believer that I have some of the most amazing friends in the world. I am blessed with women that surround me with prayers and steadfast love. And I can honestly say, I too, love and pray for them as well. These women have laughed with me, cried with me, held my hand, hugged my shoulders, listened to me vent, fervently prayed for my family. Godly women, that love the Lord God with all of their hearts and represent that love by reaching out, not only to their friends and family, but to the community - to live and love like Jesus. They are whole-heartedly Proverbs 31 women. 

25 She is clothed with strength & dignity; she can laugh at the days to come. 26 She speaks with wisdom, and faithful instruction is on her tongue. 

While keeping a dear friend's little girl last week, another dear friend called. She wanted to check-in and see how things were going, catch-up with the family and chat for a few moments. But more than that, she wanted to call to set up a time to come and visit & asked what I would like for her to pray for, for our family. Humbled and honest, I laid my heart out to her, as I always do when we chat. Love, it's as simple as that, we love one another as if we were created side-by-side. 

Her requests got me contemplating how incredibly fortunate I am to have friends that desire more than just a shallow surface friendship. Friends that call to pray with me and for me and my family. That sort of friendship doesn't come easy in today's cold and self-centered world. I am blessed to be able to call SO many Godly Women my friends, we all have a common goal...Love Jesus with all of our heart and soul and share that love with the world. We all have the same desires in life and that is something that makes our friendships easy.  

30 Charm is deceptive and beauty is fleeting; But a Woman who fears the LORD is worthy to be praised.

I learned how to love ambitiously from my Grandmother, Mother & Sister, as well as the women on my husbands side of the family. Family will never be replaced, the things they have taught me about life have helped me to fair-well in this difficult world. They gave me roots & helped me find my wings. My friends have been the ones to help me soar, being the wind beneath those wings.

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.  

With Great Anticipation...

In four short days we will take a journey down to Georgia to visit with a doctor that has been meticulously reviewing Vivien's extensive medical file. I wait with great anticipation about the coming days and the appointment that will be here before I know it. To say that I have been preparing for this appointment for over a month now would be slightly misleading. You see, I have been preparing for this appointment for over a year now. I have prayed, pleaded, researched, and fought for such an appointment as this for our sweet daughter. I am convinced that this appointment will lead us to answers about Vivien's prior medical history as well as symptoms that still plague her today. We will consult with a BioGeneticist that is a sub-specialist in Mitochondrial Disease. Upon doing my own research over six months ago, I ran across this disease in some online reading and was convinced this is what Vivien has. I have been called all but crazy on this long journey. Some doctors tell me there is nothing to worry about, she will outgrow her bizarre symptoms in another year (they told us that last year too) and we will all be amazed at how far she has come, others scratch their heads and will not rule out such a diagnosis as Mito.

Mmm, how far she has come, yes, to that there is no denying, God has had a hand in it all. And to Him shall be all the Glory and Honor. Sometimes, more often than I would like to admit, I have to remind myself that He is the explanation as to why Vivien has mysteriously gotten better and conquered milestones that many thought she never would. Yet, she still has a lot of unexplained symptoms that affect her daily; she is 95% g-tube dependent (should be 99%, but I confess I cheat a tad bit with her, letting her eat things doctors do not recommend), she still aspirates on a daily basis, and has difficulty walking around the house (sometimes falling 10 or more times in a 30 to 45 minute time frame), sick every month with pneumonia or strep-throat. Many of these things are undeniable. To look at Vivien, one would never speculate that she has had and continues to have the daily struggles she does.

I knew from the moment Vivien was sent to a local Children's Hospital my life, our life as a family would change forever. I can not explain the feeling that you have when you just know something. I just knew and I have always just known. One of the speech therapists that worked so closely with Vivien when she was in the hospital said to me the day we were to be discharged, "I wonder if they are missing the forest for the trees." I have relived that moment in that hospital room often; her holding my precious baby girl, trying to get her to drink from a bottle while Vivien screamed as if she wanted nothing to do with feeding and simply wanted to rest. I have always felt the doctors were overlooking all of the pieces to the puzzle. I pray that this one doctor will be the one to place each convex and concave puzzle piece together ever so intricately, so we will be able to view the picture as a whole, the way I have been seeing it from the beginning.

I feel strongly that this appointment will conclude one chapter of our journey and a new one will start. The unicorns that I have been searching for, may exist after all. I am beyond anxious, I am not sure what to expect. I can't eat, I can't sleep, I continue to pray daily that God will reveal His will in our lives. Do I want to know the answers? and what will I do once I do get the answers I have been longing for? If Mito is what Vivien has, where do we go from here? If Vivien does not have this disease, I may once again look a fool in the eyes of others. So much to think about and still so much to do. I am grateful for an Everlasting God that sees what I can't and can guide me during those times.