Saturday, August 20, 2011

The Yucky Bug

Last week was a good week which ended on a very sweet note of Trace getting to play with his best buddy, who also has mitochondrial disease.  They are so cute and play so good together.  They have their own wordless language and make each other giggle over & over.  Those giggles are so contagious!  What a great Friday with great friends!

Then came Saturday.  Started off great, shopping & lunch with Peyton & her best friend.  We even found a dress for her sweet sixteen party!  It was a fun trip.  Trace hung out with his Deda and I returned late afternoon to a happy little boy.  One hour later - not so happy.  Trace started having diaherra, which I thought nothing of because it happens a lot with him.  Just bathed him, mopped the floor, threw clothes in wash, all the fun things that come along with his tummy troubles.  Next on my to do list was meds and bedtime.  Two seconds after taking all his meds, they came right back up.  He was already acting gaggy when eating dinner and I was thinking to myself "where's all this gagging coming from, maybe reflux?".  He seemed very tired, so to the rocking chair we went.  Much to my surprise 10 minutes later he vomitted - and not just meds this time.  Along with that came another messy diaper.  So here goes the cleaning of another mess, this one even bigger than the last.  Thank gosh Thomas was back home to help with this one.  After cleaning messes for a couple of hours, poor Trace was getting worse and worse.  So off to the ER we went.  Arriving 1 1/2 hours later he was immediately taken back in the ER (one perk of mito, no ER waiting room).  About 45 minutes later the ER doctor informed me Trace would be admitted.  He was severly dehydrated, lethargic, running fever, still vomitting and of course having seizures.  He received two different antibiotics and IV fluids until Monday afternoon.  He finally was able to get off fluids and we could take him out to play in the hospital.  Trace was in the hospital from Saturday evening until Tuesday afternoon fighting this nasty bug.  It hit him so hard and so fast it was scary.  Unfortunately for Trace his body just can't fight illness like others. 
Here are a couple of hospital pictures from last week.  As Peyton said - only Trace could have fun in a hospital.

Hope, Love, Courage &Faith,

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,