Celebrating Inchstones: Exciting plans!

Tuesday, January 25, 2011

Exciting plans!

First a picture I posted on Facebook last night:

Asa saying his blessing at supper! We always say "Asa, say your blessing" just like we do with the other kids but he usually just ignores us, like he has no idea what we are saying. Last night though he covered his eyes while he was still drinking his water! So cute!!! This is actually a retake so I guess he said 2 blessings!

Now onto our exciting plans that you can be part of! It is time to get in shape for the 2nd Anual Jackson Cully Mito What? 5K in Millington TN! The race is March 26th. Follow the link in the upper right corner of the race blog to register online!! Or if you aren't local but want to do something to help Asa and all those who battle mito you can sponsor me as a Mito Hero! I only need 15 sponsors at $10 each. You can email me if you want to do this and need our address or paypal.

This race was amazing last year and it was only the first year so I can't imagine how great it'll be this year! There were hundreds of runner and walkers and more money was raised than was expected! I think the total donated to the UMDF was around $20,000!!! How much better can it be this year!

Like last year, I have big plans to run the 5K! Yes, last year I quit and did the family fun walk. That was great too but I really want to challenge myself this time. I have no will power though! NONE! And I get bored easily. Not a great combo! Still, I'm gonna follow the plan and see what happens! I may be the last one in but hopefully I will make it back!!!

I'd really, really, really love to have a ton of people there for Team Asa. Whether you are a walker or runner! I know my cousins are signed up and will be joining us. And in my true procasitinator fashion I haven't even registered us!!! It needs to be done by March 1st though!!! So don't do like me and wait until the last second!!!

And like Asa, we are always thanking God for you and your support in our prayers!!!

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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!