Celebrating Inchstones: School Days

Tuesday, August 21, 2012

School Days

I think we are really getting into the groove of this online schooling! Gracie and Cade both had classes with their online teachers so that freed me up quite a bit! They said the classes were over the lessons we taught last week so I guess we are a little ahead. That'll give us a little wiggle room I guess.

Gracie hates all her journal and writing time. She argues everytime. She will not do complete sentences when the instruction call for them but then writes full sentences when only a short answer will do! She claims to have no imagination and hates spelling. BUT....last night she spent 45 minutes on the school computer writing and printing a Christian song she made up. All on her own! No prompting from me! Then tonight she sat and made a list of "Everything my room needs to make it fun without TV"! This is exactly what her writing class is trying to get her to do! She grinned sheepishly when I pointed that out!

We usually save Gracie's music lesson for after Asa gets home. The songs are fun and involve movements to go along with the lessons. He really gets into it! Today, after Gracie was done Asa wanted more so we got out the tambourine played more! He had the best time!

We've had some really fun conversations and great times in our school room! I'm so glad we are doing homeschooling this year! I'm blessed with funny, sarcastic, sassy kids with quick wits. That makes for some fun school days....mostly fun! :)

Asa is doing well in school too. He has done much better with nap time this week. Today I asked if he played with his OT. He put his finger to the corner of his eye, which we'd realized he created to say "cry". After texting his OT and teacher I found out that he liked OT but did get upset when he went back to class! This is the first time, the very first time, that's he's been able to tell me something about his day!!!! Amazing! I really think he could pick up on learning sign language so quickly. We learned "elephant" at the zoo Saturday and have only used it a few times since....how often do you say elephant!...but today Asa was playing an iPad app with an elephant in it. He started trying to sign "elephant" again! Wow! He really is a sponge and understands everything we say! If only he could tell us what's on his mind! Maybe that'll be our next huge milestone!

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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!