Thursday, April 26, 2012

Back 2 Square 1

I want to start this post off by being positive because it's not going to end that way.  Trace is doing great right now.  He's been at his baseline and I believe that baseline may have even gotten better than before.  For those of you in the Mito world you know it's all about that baseline.  For those of you not - it's where Trace's normal is.  It's the place we always want our little guy to be.

Now the negative.  I'm angry, so sorry if this post seems a little harsh or crazy.  I received Trace's Transgenomic Nuclear Mitome Test results Tuesday.  They were unremarkable.  Think that sounds great right??  Well not so much to me.  You see this test is something that was supposed to give us lots of answers, something I was so excited to hear was finally available.  Well we got nada!  It was a hope to see exactly what nuclear genes of Trace's were mutated, which could lead us to a more precise diagnosis and most importantly a better prognosis for what his future may hold.  We received nothing - therefore we're Back 2 Square 1.  Ugh!  I cried uncontrollably most of the afternoon and evening.  See I want to know these things.  It's just the type of person I am.  The more I know, the better I can help my baby.  The more the doctors know, the better they can help my baby.  If anyone is wondering, Yes, Trace still has a mitochondrial disease diagnosis.  This test was not to rule that out.  It was just to better help us understand more and develop a better treatment plan for him, yet we got nothing.  Most people may think this is still great, because we didn't receive some horrible news from it.  Well here's the thing, we already received the horrible news October 5, 2010 when we received Trace's diagnosis of Mito.  We still know no more than that day.  I hate that I let myself get my hopes up so high about this test.  I just want to know - is that so much to ask?

I always refer to our lives as a roller coaster ride.  I know in some ways everyone is on that ride.  However, I feel ours is a little on the extreme side.  One day we're on the way up, hang on for a couple more enjoying the ride, oh crap the bottom drops out and then everything comes screaming down hanging on for dear life.  I'm tired of this ride - can't I just get on the carousel for a while please??

Hope, Love, Courage &Faith,


  1. I am so, so sorry. I understand exactly how you feel- we will get G's back in June and I will be devasted if we get the same news. Seems like so much of Mito is waiting, waiting, waiting, and then being disappointed because you get no information after the wait. I hope Trace continues to be at baseline and hopefully the science will advance quickly so we can know how to best help our kiddos!

  2. I am so sorry... we are still waiting on our daughters... my fear is it will show nothing... and we too will be back to square 1.
    Thinking of you and hoping you will get some answers... some way...and some peace.