Celebrating Inchstones: Adventure boy

Saturday, February 4, 2012

Adventure boy

Saturday was a nice day and we took Cade and Gracie and some friends to our church gym to shoot hoops. Asa had no desire to play inside so we headed outside to the parking lot. He loved riding his car down the slope and eventually found the water puddle at the bottom of the slope. I never realized it but he's never played in a water puddle before. He had a blast and I let him get his shoes and braces soaked!

At some point Cade came out and played a while. A few minutes later he said "hey, where'd Asa go"? We had been talking and didn't even notice that Asa was gone. But where did he go? It's an open area with no corners he could hide around. And we are in the boonies, in an empty parking lot. He was just gone! I was wondering if the rapture had come! The only place he could have gone was.....down in a deep drainage ditch!! Y'all my heart stopped until I looked over the edge!

Asa was perfectly happy! He never screamed or cried. Apparently he just feel in and started playing in the leaves! Thank goodness for leaves or he'd been in water and mud!

Cade jumped in to help him out but Asa would push our hands out of the way and grab more leaves! He finally sat up but still didn't want to get out. He also enjoyed his warm bath at home after we finally got him out!

Here's a video if you've got 4 minutes to waste!

2 comments:

Anonymous said...: Kim, I really enjoyed the video made of Asa in the Maple Springs parking lot. You are such a great mother to just let him play in the puddle! I'm glad the ditch had leaves too, or that could have been a big bump. He is boy, through and through! Thanks for posting such amazing pictures and videos! I rejoice at even his ability on the riding toy! PTL!!! Love, Mrs. Margaret; February 7, 2012 at 11:29 AM
Kim and Asa said...: Mrs. Margaret, you are right about the ride on toy! It wasn't long ago that Moma bought him one similar and he would freak out because he was so unsteady. This came with a ramp and was his Christmas present. He isn't crazy about the ramp yet but he sure liked the gentle slope of the parking lot! And did you hear his "talking"? It's mostly grunts or sighs but his eyes tell you he is sure talking to you!

Thanks for commenting! Thanks for the prayers and encouragement!

Kim; February 7, 2012 at 12:11 PM

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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!