Celebrating Inchstones

Tuesday, June 3, 2014

We are still here!

I can't believe that I haven't posted since Christmas! The only reason I'm posting how is because I need to free up room on my phone for more pictures and videos. I'm scared if I put them on the computer it'll just crash so I figure I'll put them on the blog and they'll live forever....right?!

This time last year we had to hold Asa's hand when he walked around on uneven ground, but he has become very adventurous this spring/summer! It was really cute when he'd roam all over the yard while we watched from the porch. That is until a few days in row that he just went outside, off the deck, around the yard and finally into the woods without anyone else around!! That's kind of adventure is scary!! So now all the doors are triple locked!

He loves being up high.

Or in confined spaces!

Gracie had been putting the sprinkler on the trampoline and jumping with Asa. One morning, he headed outside without her and tried to put the sprinkler under there by himself.

He's had some fun nights at Cade's baseball games....another first! He's always hated the ball games. They are loud, hot, too busy and there's no Curious George. This year his love for dirt has kept him occupied a few nights. Other nights we wait in the van with a direct view of the field.

And he still loves flags! We stopped at this display of flags after he was such a good worker in aquatherapy. It was really windy that day, which made for great flag flying but is one of Asa's triggers. He wanted to see the flags so badly that he risked it. He did really great for a long time. Then, he buried his head into my chest and covered his ears when the wind blew the hardest. I could never convince him that doing that would keep the wind from bothering him until the day we were looking at flags. I call that progress too!

I'll post more with some of the medical and school updates but for now at least you get pictures!

Tuesday, December 24, 2013

Thursday, November 7, 2013

Autumn

Asa loves walking in the fall leaves. This morning the leaves were wet so I wouldn't get in the grass with him while we waited for my mom to pick him up for school. I promised to walk with him after school. Anna picked him up after school. He usually comes in the back door, but instead he walked to the front walk. Yep, right under the tree I told him I'd walk with him under! Smart boy!

He wasn't satisfied with walking in the few trees around the house so he pointed down onto the trails in woods beside the house. So, off we went! He didn't like staying on the trails. That's okay though because he did lots of PT work by stepping over fallen trees and limbs. He even picked up his own walking stick (twig really) and swung it around in front of us. I pretended he was clearing the way of spider webs. There's a slight chance he was trashing at the dogs walking along in front of us. In any case, I didn't walk thru a single spider web! I HATE spiders and their webs!

We found the prefect grapevine to swing over a little ditch. I tested it out before the kids of course. Safety first! Asa didn't swing but cracked up at us! He did have fun walking across the ditch on a limb. So much for his fear of heights! I guess that's just the stairs. He did have a good grip on both of my hands and he got panicky the second time. Anna got a great pic of him with her cell phone!

What a great afternoon!

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!