Celebrating Inchstones: Emotional Day

Wednesday, January 18, 2012

Emotional Day

This was an emotional day for me. First of all I dropped Asa off at his last day at his old school and with his very first public school teachers. When Asa turned 3 and I was so nervous about leaving him with someone these ladies were the perfect fit! The class was small, they gave him all the time and attention he needed to adjust and grow, and I really couldn't have asked for a better fit! I'm excited for Asa's growth and development but I'm so sad to see this season pass!

After I dropped Asa off I headed to another school to watch a special presentation by Assistive Technology developer, RJ Cooper. He has developed apps, programs, switches, buttons, keyboards, etc that open up technology and communication to kids and adults with all kinds of disabilities. I really thought it would be kinda dry since most techy stuff is above my head! But it was amazing!! Truly amazing! Mr. Cooper was so good with the kids. He was so funny and personable.

He worked with one boy who could only use his foot to tap a button but that was all he needed to give Mr. Cooper a buzz from a connected massage toy. The little boy just lit up when he realized his foot button had made this silly grown man jump and hop around!

Then he used a head switch with a little girl diagnosed with Rhett's. One of her choices was "music" and he asked her therapist what kind of music she preferred...rap, hip hop, rock, heavy metal. The therapist replied just kiddie music and Mr. Cooper said that wouldn't do! She was 12 and she needed teenage options! He picked Hammertime! It only took once or twice before the little girl realized she could play the music by moving her head and she gave that button a workout! Again, she liked watching Mr. Cooper dance!

He used a 2 choice touch screen program for a girl with autism. She could request "goldfish" or "make friends". The "make friends" option was a big deal for her and just watching him introduce her to new people was eye opening. I learned a lot today. He said to be specific when cheering these guys on. Don't just say "good job" add why your proud...."good job by choosing to make friends". He also said that although this technology is great it isn't a baby sitter. You can't just sit a kid in front of an iPad and expect them to understand how to get their thoughts out! It's still work! Greeeaaatt!

I'm excited because tomorrow Asa will get to work with Mr. Cooper! I'm glad I went today to observe because there was tons of cheering and that's not how Asa rolls! I've realized asa is very intune to our facial expressions and tone of our voices. A huge grin and soft "great job" work just as well as cheering for a reward. A frowning face and low voice upsets him as much as yelling does. This makes it very hard to get onto the other kids!!! But that's another blog post! Tomorrow should be fun!

Oh and there's some YouTube videos by RJ Cooper if you want to check them out! Maybe I'll have one of Asa tomorrow night. Or I'll be too busy playing mom to video!

1 comment:

Anonymous said...: Sounds like a whole new world is about to open up to Asa. I am so happy for him. I hope his day with Mr. Cooper goes well.; January 20, 2012 at 11:37 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!