Celebrating Inchstones: The Amazing Race 2010

Saturday, March 27, 2010

The Amazing Race 2010

This is Asa's team!! My Mom and Dad came. Plus my cousin, Lacy and her sweetie, Danilyn. I thank them all so much for coming and supporting Asa and us!!

Meet the Loftins. Bryan, the little boy up high, has mito. His parents are Bo and Christine. Natalie is the little sister and Bradley is big bro!

And this is Jackson Culley and his mom, Emily! I didn't get a picture of his dad, John and big brother and sister, Wesley and Emily. They are a great family and the race was in honor of Jackson! Millington is his hometown and they sure do love some Jackson there!!

This was one of the most amazing things I've ever been a part of. They estimate that there was at least 500 people there today. Nearly 300 runners, plus us walkers and volunteers! The UMDF will be sent $18,500!!! And that is after expenses! Can you believe it?!! I was so excited when we pulled up and saw so many cars in the parking lot already. And then as we were getting out, they just kept coming in! If nothing else we got the word out about mito, don't you think!! The next run is scheduled for March 26, 2011!! Mark your calendars!! Maybe I'll run next year!

Asa did great today. It was windy and busy and he was great!! He showed off his stepping skills for everyone. He played on the blanket with Danilyn, Cade and Gracie. He had a good time! He had a rough spot late this afternoon but at least it was at home and not while we were out and about!

Thank you, Mrs. Margaret, for the reminder of that wonderful verse!! I keep telling people that I wasn't sure if we'd see Asa step or drink from a straw but just look at him now! I should not be surprised that God answers our prayers, the big ones or small ones. He only wants to bless us! He wants to pour out good things all over us. We just have to ask and believe that He'll do even more than we can imagine.

A little like the race today. Maybe we had hopes of 100 people and a $5000 donation. But look what happened! It rained on Friday and is supposed to rain on Sunday. But today was great! I don't believe in accidents. I don't believe in luck. I believe in God's blessings on our lives!! Praise God from whom all blessings flow!!!

2 comments:

Melodie said...: looks like mito what? was a huge success!! yay for research money! I love looking at all your pictures.. Asa looks really strong! It's really amazing to see just how far Asa has come. xoxo; March 28, 2010 at 12:31 AM
gg said...: God's blessings are surely being visited on Asa....look how far he's come in the past several months!!!!
I'm really hoping to make the run next year.; March 28, 2010 at 7:51 PM

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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!