Celebrating Inchstones: What a difference a few days makes!

Wednesday, September 7, 2011

What a difference a few days makes!

Our temperatures took a huge drop when TS Lee blew upwards from the coast. Our high today was in the mid 70s! I broke out my jeans and hoodie! Yay!!! It was sunny but a little windy. All in all, it was Asa's kind of weather!!!! And a million times better than the 90s and triple digit heat indexes we've had for weeks now!

He didn't do his usual screaming and squealing on the car ride home from school because I kept talking about how we'd play outside when we got home. And boy, did we ever!

First, Asa rode around the front yard in his Power Wheels car. We ate in a rural area and have a 4-6 ft woodsy stretch between the road and the yard. I turned Asa's steering wheel so that he'd go in a circle. He's never turned the wheel before so i thought i was brilliant! Anna and I were playing soccer and Asa kept going into the rough! What a turkey! When we ride the 4wheeler he always points into the woods so we have to go onto the trails. He loves the sound of the leaves and twigs cracking and snapping. So silly!

Then, to get him away from the woods, I took him to the back yard. He played some tetherball and jumped on the trampoline. He really likes the trampoline.

Finally, when Cade and Gracie got off the bus I tried to get him to come back inside. That was a no-go! So instead I brought the gait trainer outside and let him do some dirt driving. The area where we took the pool down is nice and flat so I set him walking there. At first he did great! I was trying to get someone to video but the big guys were all devoted to their homework.....really?!!! My video is sloppy and I'm sooo loud but it's documented none the less! Here's the link but seriously, I'm loud so turn the volume OFF! Lol!

It seems that Asa's colon also liked the cool weather....or maybe it was all the Miralax and Colate....because we had to come inside to change 3 diapers! In just a few hours! We were inside when Barry came home and the talk of supper started! Cade requested a weenie roast on a campfire....as long as there was no electronics!!!

Asa seemed to love the campfire too. He just sat so quietly and watched. He ate almost 1/2 of a turkey dog too! After supper the kids played on the swingset for the first time all year! Asa loved playing in the tower and even went down the slide with help a few times. It was only another poopy diaper that finally forced us inside for good!

Unfortunately, the night ended with gagging, some puke and a drain tube! Same as last night! Other than that today was a great day and I hope Asa made some memories!

1 comment:

Sarah said...: OMG> I love the squeal he does! he's so precious!; September 8, 2011 at 3:08 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!