Celebrating Inchstones: 4th Annual Mito What? 5K

Sunday, March 24, 2013

4th Annual Mito What? 5K

Saturday was the 4th Annual Jackson Culley Mito What? 5K in Millington TN. The day started off with plenty of clouds and cold temps. The forecast called for rain but thankfully we didn't see any of that! Sadly, the honoree, Jackson, was not able to be at the race. Emily was with him at the hospital because he was sick and was admitted for observation. Thankfully he came home today, his 6th birthday! Team Asa grew some this year! My mom and dad, Asa's cousin's Rayn and Jakob, and my cousin Lacy, have been supporters from the very first race! This year we added Asa's birth-3 teacher (even though she didn't get to race with us) and Barry's cousin Jessica and her hubby Emmett. They are the runners in our group!

Told you they were runners! Both placed in their age groups! How cool is that! I've decided that if I'm not a runner (clearly I'm not!) then I'm going to throw all my efforts into being a better cheerleader! Thanks, Jessica and Emmett for running so fast for our boy!

How sweet is this picture?! Asa had a terrible case of Moma-itis and was overstimulated. Lots of people took turns holding him or distracting him so I could be social and chat. These teenagers were the best too!

Check out these awesome Mito Moms! Our little group of 4 families has grown in the last year too. I'm sad new families have gotten diagnosed but I'm thankful we have all found each other!

And the mito dads are pretty awesome, too! They don't get much credit sometimes!

What we did while other people ran! :-)

Asa started off the Jack's Pack by putting his feet on the line and taking off (justblike the little boy next to us did) but he turned around after 3 steps and went back thru the finish line!!!! He liked the flags!

Like I said earlier, Asa was overstimulated and antisocial at the race. He was a social butterfly and Mr. Independent at Chic-Fil-A though! When I got back from ordering Asa and Barry were coming out of the playroom. I commented that I wished Barry hadn't taken him in there. Lacy said that Asa got up and walked in there by himself while they we're talking! It was not a clear view of the playroom and someone had to let him in but he was ready to play! Gracie helped him climb into the towers and at one point he got onto the far side and was playing in the airplane. He would NOT come down. Gracie finally had to bear hug him and drag him to the slide where he happily slid down all by himself!!!

It was a great day with some good friends! Over $20,000 dollars was raised this year! Next year will be the 5th race. We only need to raise $10,000 or so more to donate over $100,000 for the 5 year total! How cool is that?! Angie said a $100,000 donation is enough to fully fund a research project! Can you believe little ole us could have accomplished that?!! Just little ole me and little ole you....fighting mito together!!!

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Asa's story

Asa is the 4th and youngest in this family. We thought he'd come into this world and our lives would flow right along as it had the other 3 times we brought babies into this world.

We were wrong! After a normal pregnancy and delivery, Asa had to be sent to the NICU because he wasn't sucking, blood sugar dropping, floppy muscles, exaggerated startle reflex and jaundice.

He stayed 5 days were he learned to suck and eat enough to come home. He began nursing well but would scream in pain 30 minutes after each feeding. He had so much mucus and drooled so much. He had a terrible rash on his face. He wasn't making eye contact and was not hitting any milestones.

I kept taking him to the pediatrician but got nowhere until his 2 month checkup when he had only gained one pound since birth. That earned him an appt with a pediatric GI and a change to Neocate formula. Odd gasping spells and eye rolling got him into a pediatric neurologist before the GI appt. The neurologist (he was actually the head of the pediatric neurology dept) personally walked us over to the GI clinic and sat us in an exam room. That kinda makes you worry! That is when we really got the ball rolling. Asa was 3 months old.

At 4 months he was admitted to Vanderbilt Children's Hospital. He stayed 8 days and had a NG tube inserted so we could feed him directly into his stomach. He kept this for 2 months. Also during this time he had an EEG, CT scan, MRI, upper GI endoscopy with biopsy, flex sig, numerous blood tests, a genetics consult, and an ophthalmology consult and many other pokes and prods! So began our relationship with specialist!!

After 2 months on the NG tube, we removed it and tried to get Asa to eat enough to gain weight. He did OK for a little while but by 9 months old, he was fighting each feeding and not gaining weight despite being on Neocate formula at 30cal/oz. The decision was made to have a G-tube put in. The G-tube is a feeding tube that is inserted directly into Asa's belly. He can eat orally but won't so he gets feed into his belly.

Since he was going to have to be sedated for the surgery, it was agreed he should have a muscle biopsy at the same time. By 9 months he had finally began making eye contact. He smiled some but not very social. He was still very hypotonic (floppy) and didn't even have head control. Something was obviously going on with his muscles. All of his brain scans had been normal.

In Nov. 2008, when Asa was 13 months old, we found out the results of the muscle biopsy. Yes, it took 3+ months to get all of the results! He was diagnosed with Mitochondrial Myopathy. He is deficient in Complex IV for all of you medical junkies out there.

What this means is that his cells can't make enough energy to fuel his body....specifically for him, his muscles and GI system, that we know of. If his body has to burn energy to fight off infection, or a stress, then he looses energy in another system. Mito is a progressive disease with no treatment or cure. We try to keep him as healthy and happy as possible. We use the feeding tube to keep him feed so he doesn't have to struggle there. He takes numerous supplements and vitamins in the hope that they will keep him cells healthier. We check his eyes, hearing, heart, kidneys, liver, brain and lots of blood work yearly. Mito can affect any system so it is important to have baseline and watch for changes. He has a GI, neuro, geneticist, optometrist, ophthalmologist, cardiologist, developmental ped, regular ped and a mito specialist.

He gets OT, PT, speech/feeding and a home teacher weekly. He has some sensory issues with touch, sound, taste and texture. This plays into almost all areas of our lives! He is still very hypotonic but gained head control at just over a year (right after we started supplements!). He learned to sit when placed in a sitting position at 18 months. He still can't get into sitting alone. He learned to bottom scoot at just over 2. He does not crawl or walk.

He knows the signs for "moma", "daddy", "more" and "all done". He can show them when prompted but we are still waiting for him to initiate. He waves "bye-bye" and points all the time now. He loves to take a bath and water in general. He has a contagious laugh and can flash the most flirty grin ever!

We learned, with Asa, not take the small things for granted. Each smile, sound, word, bite or even trouble!! You just never know when they might not be so easy to come by or even if you'll have them at all!