Celebrating Inchstones: Awareness night at Chick-fil-A 2010

Wednesday, September 22, 2010

Awareness night at Chick-fil-A 2010

We had a GREAT night!!! There were so many people there! I could hardly believe it. I know that many just happened to be at Chick-fil-A on a Tuesday night but I also know that a ton of people showed up for Asa.....for us.....for the UMDF! I hope we got the word out about mito! I don't have the total yet but the manager said we increased traffic by 50%!! Now if all those people mentioned mito, we are in business!

This is just some of the goodies that Jill and Sara made for the night!

Sara also got the Chi Omega ladies to hostess for the night!

I was shocked when our mito friends from Millington came in!!! It is 1 1/2 hours to Jackson from Millington, maybe more! And on a school night! The big kids all had fun on the playland at Chick-fil-A. The enclosed playland is reason enough to use Chick-fil-A next time!!

And we had soooo many friends there.

(And if your picture is not on here it is because: 1.) My photograph skills are lacking! 2.) I knew you didn't want your picture on here but I wanted one for our own keepsakes. 3.) My photography skills are lacking! I should really learn when to use the flash and when to turn it off! lol)

I never cease to be amazed at how generous people are with their time, talents and money. I know so many people had other things going yet they still came by, even if it was to go or at the drive-thru. Sara and Jill surely have better things to do and yet they completely volunteered the time and talent to help make this event special to me. And I had people drive from great distances to come see us. I'm sure it would have made more money sense to send in a donation in the amount spent on gas and food but to show up is something special. The money is fine but the support is what a tired, worn out Moma needs sometimes!

I have a hard time putting myself out there for Asa, for our family. But then I think about all the other kids affected with mito. I think of the kids who passed away just this month. I think of the families who are so tied up during awareness week with just keeping their little one alive, that they don't have the time or energy to raise awareness. The families were the day to day is struggle enough. We are in a blessed place right now with Asa. He is happy and healthy. We are surrounded by people who love us and are able to help us. These things may not always be the case. So we do while we can. And we hope that we do a good enough job raising awareness that we have people who can do the work when we can't.

Saying thanks isn't enough. I don't have the words that would be enough. I just pray that God blesses each person that has given for us in any shape or form!

If you didn't make it out and want to help you can go to the UMDF site. There are ways to make monetary donations, of course but you can also find ways to advocate. You can contact your Senator or Congressperson. You can educate yourself so you can help spread the word about mito. There is a list of local UMDF groups and chapters in your area. Believe me, we need more people able to do some of the leg work on these events!

I would have never picked this journey we are on but I'm so thankful for all the amazing people we've be blessed to meet. God is so good to us and provides all our needs!

3 comments:

Anonymous said...: I'm glad that you had such a great turnout! You will probably never know how many lives you and Asa are touching with your awareness campaign.; September 23, 2010 at 9:08 AM
gg said...: Sounds like a great night with many people learning about mito!!; September 23, 2010 at 9:23 PM
clarissa said...: what a great thing you guys put together! thank you!; September 24, 2010 at 6:26 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!