Wednesday, August 10, 2011

Where We Want To Be

Trace had an appointment yesterday with Dr. K (his mito specialist).  I first have to say that Dr. K is so wonderful words can't describe.  Trace loves her so much.  As soon as she came in his room yesterday she bent down to give him a hug hello.  Well she got a little more as he decided she needed kisses too.  It was too cute!  Dr. K was very pleased with Trace's progress in the last four months as are we.  She said "this is where we want him to be", just writing those words makes me cry tears of joy.  With Trace having mito we live day to day, we don't dwell on the future, just live in the now and don't hold him back.  That's what we've decided to do with our little mister.  We've decided to look at each day, no matter how bad it is, and find some good.  That has really helped Thomas & I cope with this terrible diease.  Of course it did take a while to get us to that point, but since we've been there things have been better.  Don't get me wrong, I'm not always able to be happy and positive.  There are days which I'm overcome with sadness and want to cry all day, those days I just can't shake the ugly truth of mito and it's devastating affects on my child and all the others. 

In other good news from the appointment, Trace was able to have labs drawn for a Next Generation Sequencing test.  I really wanted to have this test done on him.  This is a new test that enables the sequence analysis of over 400 nuclear genes that may affect normal mitochondrial function.  This test could possilby give us the specific cause of Trace's disease.  We could then develop a more personalized treatment plan for him and it may let us better know what to expect medically for him in the future.  This is a new test and the lab is only able to perform 16 per month.  There is already a long line ahead of us and it may be up to eight months before his turn, but at least he's in line!  Good things come to those who wait - right??

He has appointments with his neurologist/epileptologist and GI specialist in the next couple of weeks.  Lets hope they too have nothing but good news! 

There's not much other news from The Wehring Family.  We've been trying to get in a little relaxation time in as things get very busy with school starting in the next couple of weeks.  I'm now saying I can't wait for Peyton to have her license, instead of I can't believe my baby will be driving.  Her schedule is pretty crazy - come on Sweet Sixteen!!  Of course, there has been more swimming for Trace.  Here are a couple of cute pictures of Trace and his "De Da".  As you can see once again, my child has no fear! 

Hope, Love, Courage &Faith,

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