Celebrating Inchstones: The McNair Family

Tuesday, May 22, 2012

The McNair Family

You may not realize it at first glance but this life with Asa is a blessed journey! Milestones that most kids meet with little effort take Asa sooooo long to master. Things like rolling over, sitting up, eating, walking, running. Most kids just zoom through it all and parents look back and wonder where the time went! Not here though! We've watched Asa develop in a sort of slow motion. Like watching a rose open in time lapse video. Miracle in slow motion!

Another blessing has been the people we've met. From the teachers, therapist, nurses, doctors, friends that are local to the world of people the Internet has opened up to us. I've "met" some of the most faithful, hardest working, compassionate watcher of slow motion miracles of their own! One such person is Heather McNair and her family.

The McNair's live in Texas and were some of the first mito people I met online. They have 3 teenagers with mito. Between all 3 kids Heather has gotten an unofficial degree in all things mito! More impressive than all her mito knowledge is her kindness, generosity and encouragement to us mito newbies! She is quick to pass along helpful info and encouragement. And the kids take after their Moma! The whole family is very involved in Wish Night that raises money for their Make A Wish organization. The oldest gets to be a camp counselor at a mito camp while the younger girls get to be participants. In my time as a Facebook friend with the family I've not heard complaints or whines or woes as you might expect with a family who has so many issues and appointments and test. There has been tons of smiles, laughter and jokes though!

Last week the family participated in Wish Night to raise money for MAW. The next day they were on hand as the local hospital dedicated a "Teen Room" hobnobbing with celebs. In an instant their whole world would change though! Father and husband, Michael, was hit and critically injured in a bicycling accident. His list of injuries is scary....lacerated spleen, punctured lung, many broken bones including his neck, lower back, hip, pelvis and all the ribs on his left side. His spinal cord was spared and because of his helmet his brain scan looked good too. He is currently in stable but crital condition and they are keeping him sedated. He is showing signs of infection and blood clots though so he will soon undergo bedside surgery to put in a "clot catcher" and a trach. As you can imagine this recovery is going to be long and difficult! Let me just copy and paste a recent FB update though so you can really get to "know" this family for yourself......

Update on the kids and I.....all I can say is that we are all clearly being carried by your prayers. The kids are okay, all three coping in their own way, but really okay. Tonight we got to talk....really talk...for the first time since the accident. We talked about some of what's going on with their dad right now, and then discussed how we need to take him his pork pie (hat) as soon as we can, and laughed as we shared stories and thoughts on when he comes home. We talked about how Chance is "scheduling" his break down in a few weeks (only my son schedules something like that....and I love him for it), and how the girls are following their dads advice to "Litha"...leave it the hell alone, when it comes to worrying about him. They seem to be feeling the same peace that is so profoundly enveloping me. The peace that comes when so many are lifting us in spirit. I am hanging in there....tired and sad to be a witness to the ins and outs of each day in ICU...but sleep is coming at least a little easier each night, and getting food in is getting a little better each day. Mornings are just hard, but I am hoping that starts to ease soon too. But while of that is there, the love and support of so many has allowed me to concentrate on Michael, to know that we will get through this, and allows for so much peace in this process. It's early in the game, and I know there will be good days and not so good days, but also that we are not in this alone. We are so incredibly blessed. Thank you from the bottom of my heart. You all are amazing!!"

I personally didn't know anything about Michael. I wasn't aware that he was an avid cyclist, commuting over a hundred miles a week on bike. I didn't know he was such a leader and advocate in the Dallas area for bicycling safety and awareness. By reading some of the articles posted in cycling magazines though, it seems that he is just as awesome as his wife! Here's just a sample:

http://frontburner.dmagazine.com/2012/05/21/michael-mcnair-bicycling-advocate-seriously-injured-in-crash/

Please keep the McNair family in your prayers as they endure this long recovery. Pray for the doctors and nurses involved in his care. Pray for quick healing and a 100% recovery! If you feel moved to help support the family financially there is a ChipIn fund set up by a friend. Every prayer and penny is needed, deserved and appreciated!

Thank you in advance, friends, and don't take one single moment for granted!

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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!