The Beginning of the Journey

We received our diagnosis two weeks ago and I consider our entire family to have just embarked on a new journey together.  I have created this blog to chronicle the joys, trials, and tribulations of that journey.  Whether this blog ends up being used for self-therapy, inspiration, or just information dissemination, I think it will help.


I will do my best over the upcoming weeks, months, and years, to use this blog to update our friends and family on Ryan's condition.  It's funny, part of me is really hoping I won't have much to say.  I am hoping that there aren't many changes in Ryan's condition and that we have a lot of healthy years ahead of us.  The other part of me is praying there are many, many medical advances in the near future that will change Ryan's prognosis and give me LOTS to talk about!


My hope for myself, as I write this, is that I DO NOT use this as a place to whine.  There are MANY in this world that have it WAY worse then us.  I hope this becomes a platform to praise God, acknowledge His plan, and grow closer to the woman He intended me to be.  


This is where our journey has taken us to date...
We are waiting for confirmation from NIH (The National Institute of Health) and the team of Neurogeneticists there as to when we can travel back down there for a post-diagnosis follow-up.  Ryan received the news over the phone and we are waiting to sit down with the experts and have the "What does this really mean" conversation.  We are hoping to be seen in the middle of April.  At that visit, we will discuss the specifics of his prognosis like how much time he likely has at his current strength level, what lifestyle changes we need to anticipate, and how to find out if this disease has affected other family members like his sister and our children.


We will keep everyone posted!