Celebrating Inchstones: Who's up for a run?!!

Monday, February 27, 2012

Who's up for a run?!!

There's less than a month until the Jackson Culley Mito What 5K in Millington! Guess what that means.....I walked 2 miles today! I'm a little behind if I hope to run this year. Behind even if I run/walk this year. Shoot, even behind if I want to walk in the 1 mile fun walk! I'd LOVE if any of y'all local folks want to join us on Team Asa!

There are 4 ways you can join us this year. you can join us and kick my behind by running the 5k! Or if you're like me and not quite ready for that you can join us for the Jack Pack Fun Run/Walk. You can also be a Spirit Runner and get a shirt but not have to show up or run. And lastly, you can make a donation to the UMDF right from the race registration site. See, there's something for everyone!

This year's race is very special! It's March 24th and that just happens to be Jack's 5th birthday!! How cool would it be to set a donation and attendance record for Jackson's birthday! Pretty awesome party!!!

This year will also be tough too though because it'll be the first race without our mito girl, Emma. Our Memphis mito group started with just 4 kids and now sweet Emma is gone. There have been many mito deaths this past year. Too many! Just another reason to race....in memory of such awesome kids!

So, details.... 3rd Annual Jackson Culley Mito What 5K, in Millington Tn, will be March 24th at 8am. You can register here as a 5k runner, a 1 mile runner/walker, a spirit runner (includes a shirt) or make a donation. Thank you all so much for the love and support you've all given to Asa and his mito buds!

2 comments:

Debbie said...: Super cool...wish I could run/walk with ya!; February 27, 2012 at 10:40 PM
Debbie Morris said...: Haven't decided if we will walk or run (yeah...right!) but we will be there to be on Team Asa! Pa and DeeDee; February 28, 2012 at 5:29 AM

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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!