Celebrating Inchstones: 3rd Annual Jackson Culley Mito What 5k

Monday, March 5, 2012

3rd Annual Jackson Culley Mito What 5k

I FINALLY got around to registering for the Mito What 5K. There's still time for you too! But hurry because the only the first 200 get a t-shirt! And even if you don't race or even show up, you can get a shirt. You'll be raising awareness just by wearing it around town. Click HERE to sign up.

Emily recently blogged about her sweet Jackson at her blog, The Freckled Toe.. I'm going to copy and paste here because sometimes folks don't want to follow a bunch of links but do bookmark Emily's blog to get updates on Jackson in the future. So from Emily's heart:

This fall...
Dear family and friends,

Thank you all so much to those that have already signed up for the Mito What? 5k. Your support these past 5 years through this mito journey have meant so very much to me. I always treasure your kind words and prayers. This race means so much to me. It gives me hope that a cure or treatment will be found one day when I see so many people coming together on that day.

When Jackson was fist diagnosed with Leigh's John and I were absolutely devestated. We had no idea what was ahead of us.The day in November that Jack was diagnosed with Leigh's, I remember telling John that I haven't even planned his first birthday party and now the doctors are telling me I need to plan his funeral. It was a heartbreaking time. I am grateful to God for every smile Jackson has because there was a time when Jack didn't smile. I am grateful to God for every moment I have with Jack because I never know when Jack's life will end. Even though I am so grateful for Jack's life there is the reality that Jack has never talked, walked or even played with a toy. There are so many milestones of childhood that Jackson will never experience. It just completely breaks my heart. This fall Jack won't be going to Kindergarten. I will never hear Jackson recite his ABC's,123's or his phone number and address. Jackson won't be star of the week and make a poster with photos. I will not pack a snacks and send milk money for him. This fall I will not be buying big crayons, fat pencils or even a nap mat. He won't be picking out a new lunch box and backpack to go to school. I always enjoyed watching Elizabeth and Wesley struggle with this decision. I won't have that pleasure this fall. I won't even get to cry when I leave him on his first day of Kindergaten like I did with Elizabeth and Wesley. Instead, Jack will be at home having his diaper changed, enduring physical therapy sessions so his muscles won't atrophy, be on continuos oxygen to keep his O2 levels up, have formula poured through a tube into his stomach to keep him nourished. Jackson will have to be continuously repositoned to avoid skin breakdown. He will have his temperature checked rectally every hour to make sure he temp is normal. If his temp is not normal and he is overheated he will have to be cooled down with icepacks and cool rags. His brain can not regulate his body temp. He will be lifted in/out of his bed, wheelchair, bath chair, stander and carseat. Included in Jackson's physical therapy sessions (which are twice a day) are stretching sessions for his arms, legs, hips and rib cage. He gets strapped into a stander and stands for 45 min to help his internal organs, leg bones, pelvis and spine. Jackson will endure 25 minute or longer chest percussion treatments 4 times a day, just to keep his lungs pneumonia free. He will be going to the neurologist, cardiologist, pulmonologist, GI, immunologist,allergist, kidney specialist, physical therapist, occupational therapist, speech therapist appointments this fall and as long as he lives. Jackson will be hospitalized and will have IV's when his temp is 101 or greater. He will be pricked for bloodwork this fall and the rest of his life. This fall Jackson will be learning to communicate with a switch. This fall I won't be writing notes to Jackson's teacher. I will be writing letters to insurance companies begging for them to cover the cost of Jackson's needs.

So with all that said I am begging for your participation in the Mito What 5k. You don't have to run (I never run anywhere)! Just register and get a shirt. You can raise awareness just by wearing mito fashion. I am begging from the bottom of my heart.

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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!