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.