Celebrating Inchstones: A good day

Thursday, April 1, 2010

A good day

Asa went to his first ball game of the season. Well, technically it was a scrimmage but it counts!!

Cade had a scrimmage and Gracie had practice so we all went off to the ball park! And it went wonderfully!! Asa seemed to love the people and didn't startle at the noise. It wasn't too windy or hot so that was perfect for him. This is so different from last year. He had a meltdown nearly everytime we tried the ball park last year. Now, I'm sure as the season gets going and it gets busier things will be different but tonight was wonderful!!

I also had an amazing run in with a stranger at Khol's today! Odd place to meet an angel but I'm almost convinced she was one! I ran in to look for Anna a shirt. I only had 20 minutes and it only took 3 minutes to decide I wasn't sure what she'd like so I moved on to the baby dept. As I was looking at stuff for Asa, an employee started up a conversation. "How old is he, what's his name, how'd you come up with that name", just the usual. But she didn't give the pre-recorded responses to my answers. "How old is he? He is 2 1/2. Is he running around everywhere?" or "What's his name. His name is Asa. Oh, that is neat, weird, unusual (take your pick). Thank you we like it." You know these conversations usually follow a pattern.

But not this conversation. Turns out she knew the meaning of Asa without me telling her....physician or healer. And she wasn't taken back by my joke of "we thought he might grow up to be a physician, not have a dozen on speed dial". She had several siblings with special needs. Then she goes on to tell me that perhaps "healer" had a different meaning for Asa and our lives. Perhaps he wasn't to be "healed" but he was to "heal" others. And not a "healer" in a physical kind of way but by showing them things they'd never seen before or teaching things they hadn't been taught before.

Now this might sound like a deep conversation for the middle of dept store but let me tell you I get chills thinking back on this even now! I got to tell a little about how Asa has opened our eyes to new people and things. How life is so much sweeter and things aren't taken for granted as much now. How can so much be said in only a few minutes during a shopping trip? I wonder what spurred her to approach us like that? Well, no I don't wonder, I already know! God sent her to me so that I could share a little of our story, our life with someone. Each time I tell how blessed we are to have Asa, I feel it even stronger than before! God has been so good to us!! So good to me!! We are never alone!

My heart and mind are just so full right now!

3 comments:

Amber said...: Wow Kim...reading that put tears in my eyes. What a wonderful experience for you today.; April 2, 2010 at 6:28 AM
Anonymous said...: What a wonderful example of how God works, even when we least expect it. Thank you for sharing such a heartwarming story.

This is the first time I've posted on your new blog page, so I hope this goes through okay. Look forward to continuing to read your postings and on occasion post back to you.

Ms. Becky; April 2, 2010 at 10:13 PM
Anonymous said...: What an incredible story. Sometimes it takes a stranger to show us what we already know, but don't realize sometimes. You already knew how special Asa is, but now you have a new perspective. Awesome!

Celeste Lott; April 7, 2010 at 10:22 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!