Celebrating Inchstones: Hot

Friday, April 19, 2013

Hot

Asa's had a tough week or so! It's only mid April and the temps have been in the 80s. He school has an old boiler and the AC hadn't been turned on when the first hot temps started. He overheated a few times at school or I just didn't send him because the AC was not on. It took several emails and visits from Maintance but Asa went back to school today. He sure loves school!!

This picture was taken around 8am on Wednesday. He had gone out on the deck and stayed out of the sun but he was already getting sweaty. I asked him to smile for his teacher and I got this pose. Right after I put my phone away he blew a big kiss too.

On Tuesday, I took Asa to school but by 9:30 he was too hot so I picked him up. We killed time and ran errands because Asa had hippotherapy at 4. One of the errands was a visit to the school Asa will go to next year. My first question was what type of AC they have! Asa will be in a self contained class with K-5th grades. There's 15ish kids, one teacher and 3 aides. There were 2 Ks in the room when we visited. The other grades were out with their other typical peers in their grade level. We walked to the playground and met the other 2 aides and some 5th graders.

Asa made himself at home! The teacher and aides seem great and seemed to go above and beyond for the kids. I did have some reservation though. First, that's a huge age range! Asa's a small 5year old. More like the size of a 3 year old. Some of the 5th graders are big! Yikes! Secondly, it's a looooong walk from Asa's room to the lunch room, typical K room, gym and playground! Having said that though, I have no doubt that Asa will be fine! This time last year Asa wasn't even walking! Who knows how much endurance he'll build up over the summer! Every time I try to prepare teachers for his behaviors, he does a million times better than I could imagine. He seems to know how to rise to the challenge!

I didn't ask if the kids have a nap time. I'm sure Asa will let them know when he's too tired anyway! It's going to be a new chapter in our adventure for sure!

He's so cute on the horse! And he worked soooo hard this week! Again, each week gets better and better!

Oh and since I complained about the heat, today has hovered around 50 degrees and strong cold winds! Who really needs spring anyway! Ping ponging between winter and summer is fun......NOT!

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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!