Celebrating Inchstones: Weekend update!

Sunday, January 22, 2012

Weekend update!

On Friday, Asa and I visited his new class at his new school. I don't think I told y'all about his class. There was a few choices of teachers. I looked at 2 classes and then the principal mentioned a third teacher. Her name is Birdie. This rang a bell with me. I think I blogged about it before but I can't find it now. Anyway, many many moons ago I was in line to checkout somewhere. I'd guess Walmart since that's where I spend 90% of my free time. The lady behind me asked about Asa and his special needs. Turns out she was a special Ed teacher at the school he will be at now! I had forgotten all about it until I heard her name again. We walked down to the room and guess what she had....a huge cardboard box playhouse! Right up Asa's alley! So Asa and I hung out in Mrs Birdie's room Friday afternoon. I answered questions and the nurse from the Asa's first class stopped by to train the new teachers on draining the feeding tube. We kinda hoped he'd get upset and need draining so we could show them in real time! Instead Asa did great! He loves the room and the new toys. He even sat beside one boy and rubbed his head! The other boys were so sweet too. Very calm and well behaved. I hope Asa picks up this behavior! And listen to how great these nurses are...even though Asa really doesn't qualify for nursing they are supposed to go tomorrow and be back up if his new teachers need it. We only stayed 2 hours Friday and he'll be there 3 hours from now on so hopefully he can make it! Here's a few pics I snapped.

After school we kidnapped Anna's boyfriend, with his parents permission, and surprised Anna with a birthday trip ice skating! We had fun but it's hard! Lol!

Gracie and I were trying to show how tired we were after 2 hours!

And this was what Gracie and I saw Saturday morning when we heard noises in Asa's room and went in to get him out of bed! With the light off it was dark in his room but we flipped the light switch and saw that Asa had gotten out of bed and cruised to the end where his toy shelf is! He was standing so tall and rocking the shelves.....time to tie those down! Gracie I were both surprised and we ran off in opposite directions to grab cameras! he was happy to pose for pics! He's gotten out of bed before but mostly just to slide to the floor. He has never roamed around before. He's never even cruised this far on anything!

We are looking forward to a new week full of firsts!

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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!