Celebrating Inchstones: Schools out!

Wednesday, May 19, 2010

Schools out!

Cade and Gracie are done with school! Cade is now a 4th grader and Gracie will be in the 2nd grade! It is so exciting but so sad too. At awards day today I watched as Cade's group got awards. Many of these kids we've known since Kindergarten. I noticed this year how much older the kids looked. How mature. Like little people, not little kids. I can't believe Gracie's class will change in the same way. And then Asa will be coming along. We won't even discuss Anna and how her classmates have matured! With the makeup and hair, they certainly aren't the same kids from Kindergarten. You see how sad it all is?!

Gracie got 2 awards. One for perfect attendance and the other for straight A's. The all A's award was a big trophy. I could see Cade's mind churning! When it got to Cade's class, he got one award...perfect attendance! He got a trophy but it was small. He argued and argued with me that he had all A's and B's. Now really, with 3 kids getting report cards, 4 times a year, plus the progress reports, I kinda lost count of who had what grades. I know I'm a horrible parent but hey, this brain needed more room and something had to go!

Anyway we got home and I looked at his report card and he was right. He'd had all A's and B's, all year! So I called the school and they checked into it. He now has a trophy waiting for him at school! He has asked me a million times if I would go get it but I told him he could wait until tomorrow. He is a little obsessed about it though!

I didn't rejoice in the glory of summer too long though because I suddenly turned into a short order cook! I've got to quickly come up with a meal time game plan for the summer! Maybe I could talk them all into getting feeding tubes!

Oh and I forgot to tell you about our new OT plan! With Asa starting school and his sensory issues involving sound and crowds, we've decided it'd be good to try to expose him to busy situations in small amounts before school starts. Without realizing it we have seriously adjusted our lives to minimize these busy, loud situations for him. We eat out at odd times to avoid crowds or just do a drive thru. We don't take him to many functions to avoid the noise. We have really sheltered him, which is what you'd do too if your baby puked all over everything each time he freaked out over a crowd or noise!

Anyway, we now need to get him adjusted to these environments. So Mr. Jim suggested we play music at supper or even record the school lunch room noise and play that. I think we could get the same affect by taking him out to restaurants! And not the ones with drive thrus! Jim suggested it'd be a good idea to have his family along to offer OT tips and extra noise! Then Asa has been doing some touch screen computer work. I'm tickled about his abilities already! But how do you adapt that to the home environment? I'm thinking an iPad!!! Right?! So my next goal is to get insurance to cover meals out at restaurants and an iPad! Should be easy, right?!

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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!