Prayers...

Well, hello there.

I promise I didn't plan on leaving for months and months.

I struggle with finding balance between being too honest and real, how much of Bella's medical information to share, how much of what I'm feeling I should put "out there", but yet, this is our life.  I can't pretend it's all sunshine and rainbows, because sometimes, it just isn't. 

I've thought about going private..but then I think of all the people who reached out to me when we first started this journey three years ago.  I wouldn't have found many people I now consider dear friends, had they not shared their story and been open with their feelings.

Anyway. 

For all our prayer warrior friends..I have a huge prayer request.  Bella's neurogeneticist recently submitted her application to the National Institute of Health's Undiagnosed Disease Program.  What this means for Bella is that if she's accepted, she would spend 4-5 days in Washington, DC, with some of the top experts in the country-all trying to find a diagnosis for our curly-haired girl. (Along the same lines of "mystery diagnosis", but not solved in an hour)! Probably the very best use of our tax dollars ever! The odds are not great.  Out of all the applications they receive, only 50 people every year are invited to participate in this program.

We were told by our neurogeneticist that they will most likely not consider Bella as a candidate, based on her MRI.  According to him, we are likely dealing with something that's too rare for even the undiagnosed disease program to consider.  (I've always known she's one in a million...)  :)  The NIH called recently asking for additional pictures and videos, and some more medical information.  I'm not sure if that's a positive sign, or if it's just a routine procedure, but I'm trying not get my hopes up.  I truly am at peace with whatever the decision might be (God has demonstrated to me again and again that HE is in control and has a wonderful plan for our precious Bella), but prayers are appreciated!  All the information has been submitted, and now the waiting begins.  It really is the "end of the road" as far as testing at this time, until in the words of our neuro "we get smarter and science catches up". 

Likely a diagnosis will not change things at this point, and most likely there will be no treatment to cure whatever "it" is.   But, a diagnosis will be helpful for our boys when they decide to have children, will possibly help us know what to expect for Bella's future, but most of all, what if?  What if someday, there is a treatment for whatever condition Bella has?  We'll never know that answer without a diagnosis. The "what if's" keep me awake at night, and I'll never stop fighting for a diagnosis and believing in her.

Thanks so much for all the prayers and love.

This has been my motto since I first heard this song a few months ago:

(and I was going to post a few pictures, but blogger and I are having a little spat, and Bella desperately needs to go to bed.  If I have time to play around with it later, I'll post some pics).  :)