Celebrating Inchstones: What is valuable?

Friday, January 13, 2012

What is valuable?

I've read a very heartbreaking blog today. It's made it's way around the Facebook pages of my friends with special needs kids. If you don't want to take the time to read it right now I'll give you a brief rundown.

--The parents of a child named Amelia, who has a rare genetic condition and was in liver failure, had a meeting with her doctor and a social worker to discuss the options for a liver transplant. The family had already decided they'd all be tested and since it was a large family, one of them would donate. But that was not an option listed on the forms presented to these parents. The highlighted portions said "mentally retarded" and "brain damage". In shock, the mom asked if she was understanding correctly. Was the doctor saying little Amelia could not get a transplant because her condition has caused "mental retardation"? He said "yes"! It gets even more outrageous and I hope you will read the post. This could certainly hit close to home for many but in all honesty we are ALL in danger of this kind of discrimination. Any of us could be a single car accident from "brain damage".

If you read the blog are outraged you can sign a petition at change.org. If nothing else, share Amelia's story.

But about the time I begin to wonder if we are really the type of society that even in a profession that is sworn to "do no harm", we can so easily write off the value of a human life, I find this link on Facebook that makes me tear up....no easy feat! It's an article about Tim Tebow. Surely you've heard of him. If you don't know him from football you've likely heard how is faith in God is getting him tons of attention....both good and bad. I didn't really buy into the whole Tebow praise until recently. I thought he was a faze and would fade away....plus he was a Gator! The more I hear about his history though, I'm pretty certain that his faith will still be strong even after football fades away!

If only our world was full of people who saw value in ALL people!! I want to be that kind of person. I also don't have the time and space in my life for those who can't see that value.

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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!