Celebrating Inchstones: Zoo Field Trip

Friday, August 17, 2012

Zoo Field Trip

We had so much fun today. The Tennessee Virtual Academy folks had a meet and greet at the zoo. We woke up this morning and apparently it had stormed overnight but we slept right through it. The forecast still called for rain but the chances were slim and we headed out just hoping and praying we wouldn't get drenched! Thankfully we only got drizzled on some and it was kinda fun to play in the rain! Plus, the zoo was pretty empty except for the K12 kids. It was kinda a perfect day for the zoo!

It's been years since we went to the zoo and I'm sure Asa doesn't remember it. Cade thought he was too big for the zoo. Gracie was super excited! I liked the new Teton Trek that has a huge log building, the wolf and bear exhibit and lots of trees. Gracie loved the snake house and had to go in twice! Asa watched the elephants and liked the train. Cade was too big for it all but did get great pleasure in splashing us with puddles he jumped in! It was kinda fun!

You can see Cade thinks he's too big!

Riding the train. I'd try to hold or touch Asa when the train jerked or wobbled but he'd shove me away. I guess he's too big too!

They had a welcome sign up for the K12ers. I half joked about a pic but since the kids stepped up there I figured I better take the pic! Cade was trying to cover the name but instead he looks like Vanna White showing it off!

And more of my torturing of Cade. He took this pic because I promised him an Oreo Blizzard from DQ on the way home. And I did buy him one! We had so much fun aggravating each other today!

K12 paid for the kids to get into the zoo and a feeding stick for the Birds and Bee exhibit. The birds were wonderful until they swooped down near me. I may have squealed and took my stick away as the first bird flew at me!

Cade and Gracie were fighting over this bird in the tree. Just like siblings! An enclosure full of birds and they fight over the same one! Barry actually caught the first one.

They were pretty birds as long as someone else was holding them!

I ran out of storage on my iPhone and couldn't take more pics. I have 600 pics and videos saved. What can I do with them now? I want to keep them just not clogging up my phone. Any techy folks out there?

I enjoyed meeting some K12 teachers and other parents. There is another fun day at the end of the month locally and I'm more excited about that!

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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!