Celebrating Inchstones: A birthday and golfing

Sunday, June 13, 2010

A birthday and golfing

Today is Barry's birthday! Facebook already let the cat out of the bag that he is 43!!! From now until November, Barry is 10 years older than me!! We met and married when I was 18 and he was 28!! I can't blame my moma for the panic she must have felt! I'm sure there is a whole post (or 2 or 3) in our summer courtship! Maybe another day!

Anyway today is his birthday and I think it has been less than stellar! He deserves a locker room visit with the Titans, a big ole steak supper, a whole theater rented out just for him with whatever he chooses to see, a new lawn mower and one of those new V-6, 305 hp Mustangs they keep showing on TV. And I'm sure he has a ton more man dreams but that is all I can think of off the top of my head!

But he didn't get any of that. In fact, he is having a hot dog for supper, although it is an all beef hot dog! He made coffee and ironed church clothes, just like any other day. He endured my nagging and bossing all day. He rocked Asa to sleep and put him to bed, just like normal. This week, he spent 4 days driving me to a doctors appt 3 states away. It has hardly felt like a birthday at all!

Barry endures more than anyone really knows, I'm sure! He works a difficult, demanding job and then comes in to me just waiting for him to help with Asa some. Thankfully, Asa is much better and I'm not quite so ragged when he gets in! He still does Asa's bedtime 90% of the time though! He helped coach Cade's baseball team this year. The last 2 seasons, he helped coach Gracie's team. He even helped out with her team a time or two this year when they needed him. He rides 4 wheelers with Cade, will drop nearly everything to come fix a toy or DVD player or something, work on the pool, , or kill bugs! He will spend 10 minutes at bedtime to vacuum a couple of ladybugs out of Anna's room at night! I was sooo over that long ago, she can just make friends with them and go to bed!! I know many people see the mothering role as the selfless but I'm not a 1/10th as selfless as Barry Wilson!

He works hard to provide for our family! He does a job the right way, the first time and he doesn't stop until a project is done! As a procrastinator, I can't understand that work ethic! He keeps our yard mowed and looking nice, he changes the oil in my van at 3000 miles (whether it needs it or not!) and he will cook and do laundry if needed!

He is one great guy!!

And here is how he spent his birthday....

He played golf for the first time today! We had to drive by a golf course for some of Gracie's ball games. Gracie up and decides that she wants to play golf, she thinks she'd be good at it...I don't think we'll have to worry about her self esteem at all! So my uncle and cousin play golf and they let Barry and Gracie tag along today! Barry was really pretty decent and Gracie, well, Gracie thought she was good! She did do OK but she was soooo funny. She looked at the score card one time and said "I wonder who is winning" completely oblivious to the fact that she hit 3 times as much as anyone else! I may have created 2 golf monsters!!!

I know it wasn't the dream birthday that many men dream about but I'm betting Barry won't complain...much!

3 comments:

gg said...: Happy Birthday Barry...you have a wonderful family!!!; June 13, 2010 at 11:06 PM
V~ said...: WOW! What an awesome Dad & husband ~ a truly good guy!!

Happy Birthday to Barry!; June 14, 2010 at 9:01 AM
Amber said...: I knew we had a lot in common! :) I was 18 when we were married too...Jay wasn't as old as Barry, but he was 24.

Happy Birthday Barry!; June 15, 2010 at 8:34 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!