Celebrating Inchstones: OT hooky

Tuesday, June 29, 2010

OT hooky

I cancelled Asa's OT for today. He was coughing so loudly that I didn't want other parents to worry for their kids!! I really think he is fine, he has had no fever for 5 days, he is happy again and nothing is coming from the cough or the sneezes. But to be sure and ward off dirty looks from other parents I kept Asa home.

And that makes it one week since Asa has been out of the house! He rode to school with me one day to drop off the kids so I guess that counts but he didn't see anyone. So for 7 days he has only seen those of us who live in this house! Poor guy!!

When I was getting my shoes on to go pick up Cade and Gracie this afternoon, Asa knew something was up! He whined and scooted towards the back door, and I wasn't even there yet! I asked if he wanted to "go" and made a sign. I think it was the right sign but I'm not certain, 2 hands together and one points and moves off. Is that it? Anyway, it worked for me so I went with it full force! And Asa signed back!!! Not exactly like mine but close enough, one arm raised towards the door. He got the idea!! I was so happy and we did it a million times at home. I kept trying in the van and he wouldn't do it. Anna said it was because he was already "going" he didn't need the sign! Later tonight my mom came over and Asa got all excited and squeally when he saw her. He even tried to scoot out of my lap so I stood him in the floor and he stepped towards her!!! I asked if Asa wanted to "go" with DeeDee and he put his hands together and threw one towards the door!!! In a very clumsy way but it was "go"! I use a handful of signs with him all the time but he rarely gives them back. Most everything turns into a clap! :)

And of equal or even greater importance in this household, Asa likes this season of Wipeout!!! The TV show is hilarious and you can't help but laugh. All the laughing has always upset Asa. I mean, even the slight laugh where you shake but no noise comes out gets him. And when I say "gets him" I mean "sends him into a pukey mess"! Not the reaction you'd want for such a funny show! We watched tonight and Asa laughed at all the falls on his own. He was really into the show!!! I think we have a weekly tradition! Maybe this means America's Funniest Videos can be shown again too!

I finally got the 48 hour VEEG finalized with Vandy. It'll be July 23rd. We're hoping we can hook him up, scare a few episodes out of him and be home by dark! Ok, that is wishful thinking but I do hope he startles easily and we don't have to be there long!

And I got my info from our visit with Dr. K. I don't know why I wait for these notes and then get ill when I read all the ugly labels. The good news is his bloodwork looked good other than the immunology stuff. Mine was normal as well. She also sent some stuff so I could have some ammo in the fight for Q10 coverage with the insurance! Not sure I'll win but at least I have a weapon now. I'm not sure when I'll start the war though!!

1 comment:

Debbie said...: getting myself updated...

glad things are going well for you guys. i know the icky feeling of reading clinic notes, all the medical mumbo-jumbo...

how do you begin to try and get vitamins covered...I should really look into that, and try and save some $$$; June 30, 2010 at 10:08 AM

Post a Comment

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!