Celebrating Inchstones: We did it!

Thursday, January 12, 2012

We did it!

Before I get to my meeting with Asa's school I've got to tell you about an amazing thing that happened this afternoon. Many of you will see no significance in my story but many of you will!

I'm pretty sure that I haven't used a public bathroom since Asa's been born if I've been out alone with him. I've tried a few times but the flushing terrified him. More importantly, there just isn't an easy way to do it. I can't hold him, I can't sit him on the floor and most stalls aren't big enough for a stroller/wheelchair/buggy.

Today though, before we changed at aqua therapy, we went into the large family bathroom. I stood Asa against the wall near the door where he stayed while I did what you do in there! He has the ability to stand there propped but not the confidence to shuffle down the wall to get into something! It was perfect! I did think he was gonna take his first steps when I started rolling out the TP! That really cracked him up and he wanted to play so badly!

Ok now if you are done hooting and hollering with me about the potty I'll tell you about the meeting today. I think it went really well! Asa's teacher, OT, PT and SLP were there to speak up for him. We reviewed his history and his present skills and the need to challenge him more. We ended with the plan for me to visit tomorrow afternoon and see the 2 classes that seem like the most likely placement. I'm so thankful that Asa's OT and PT go to both schools so they can give the most accurate info. Asa will visit therevwith me on next Friday and then he'll start full force on the next Monday, January 23.

The class will have 4 other kids. They will go the lunchroom, art, music, plus his therapies. I have some reservations about such a busy schedule for the little guy but I think after some adjustment he'll love it! I just hope the teachers are ready for him! He is used to giving the schedule for the day not following someone else's!

I'd really like him to go ahead and start next week but they are out Monday for MLK, Jr day. Then Wednesday and Thursday there is a big conference with Assistive Technology. RJ Cooper will be seeing several kids from the area to show off some great special Ed tools! On Thursday afternoon Asa is going to be one of his students. I'm pretty excited and I hope Asa behaves himself! A couple of times he's really preformed for crowds but just as many times he's had meltdowns. I guess we'll find out next Thursday!

Thanks for all the prayers for today's meeting. I had such peace going in there! And I have a lot of excitement for his next big step!

1 comment:

Anonymous said...: It all sounds great! I am wishing you lots of luck with his new schedule and such :o); January 13, 2012 at 9:05 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!