Celebrating Inchstones: Assistive Technology

Thursday, January 19, 2012

Assistive Technology

Asa had his appointment with RJ Cooper today. He did his Asa usual. He did really well but then lost it a little but not too badly. I just thought we were going to see some equipment but the little chat at the end was right on! And I think RJ might could fix those fits if he was in charge for a minute! What a patient, observant man! I saw him work with several kids with varying needs and he just reacted to each ones needs seamlessly! Pretty cool since he only met them as they came into the room with just a little written background.

It's a 12 minute video so you casual observers may not want to watch. We missed a few minutes at the beginning. Asa had an iPad with 4 choices...tissue, music, book or tickle. Asa choose tissue which was supposed to be a non desirable object. Asa likes tissues though so he didn't mind his choice. Eventually RJ helped him choose music and he did a little dance with him. This kinda pushed asa over a very fine line. RJ worked thru it and asa made some more choices but never really got comfortable. He did well though! The finally directions were if we did these choices for 10 minutes, twice a week we'd see a different kid in 30 days! His program cost $30 so I haven't jumped on it just yet. and after I take Asa out if his chair his bottled up energy comes blasting out! I have no idea where all that jumping came from!

Anyway, watch at your own risk! :)

2 comments:

Anonymous said...: So is this to help with his behavior or is this to help with communication? I couldn't get over how much energy he had after he got out the chair. Is he like that a lot or was this just something he does occasionally? Sorry about all the questions. I'm just trying to understand a *little* of what you have to deal with. BTW, I love his haircut ;o); January 22, 2012 at 11:43 AM
Kim said...: Susan I love questions! And thanks for the haircut comment! I chop on it all the time. A little here, a little there! Lol

We hope that if he learns to use a talker he will be less frustrated and will mellow out a lot. Of course learning the skills and using the skills is 2 separate things! He may learn but still scream just because it's easier and he's rotten! It was perfect how RJ described it as a tic. Asa screams when he is happy, sad, scared, tired....anytime! He has gotten much much better though!

As for the energy.... This is not normal for him! He gets goofy and "happy feet" occasionally but this was the longest and wildest! Maybe he liked having an audience! Lol!! He's either hot or cold, not much of a middle of the road! It's always fun!
Thanks for watching and commenting!

Kim; January 22, 2012 at 7:27 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!