Celebrating Inchstones: A great weekend!

Sunday, January 30, 2011

A great weekend!

We have had a great weekend! The weather has been wonderful with sunny skies and highs in the upper 50s and lower 60s. There is a feeling of spring in the air.....too bad they are predicting more snow this week! Asa even went to school in short sleeves on Friday. He rode his little Power Wheel car outside too! He doesn't turn the steering wheel at all so I just turned it so he could ride in circles. He was more than happy!

On Saturday we took a road trip to Nashville for a mito meeting with the UMDF chapter there. It's been a while since we've been to a meeting and it was great to see everyone again. They are such special people! I can't believe it's been 2 years since we joined this group! That means it's been 2 years since we got a diagnosis. Our first meeting was the same month as our muscle biopsy results! How's that for God's timing!!

Asa did great on the ride and didn't have a blow out diaper until we got home! How nice is that! He had a total meltdown but at least that was at home too!

Today was a wonderful day with our church family and then lunch at my mom and dad's! Sundays have to be my most favorite days of the week!!!

I love Asa's bedtime now that he is in his big bed! With the crib we'd rock and sing and rub his face and rock and sing somemore. Then he'd wake up when we laid him down so we'd start over! Now we just crawl into his bed and he pokes in my ear until he drifts off to sleep then I get up! I confess that I often doze off too and I like it! Laying with him also gives me time to think and pray. The way his eyelids get heavy as he is drifting off and the sound of his breathing getting slower and rhythmic....it is so relaxing! We have so much to be thankful for!

Tonight Asa showed off a new skill at bedtime. He started out playing in my ear like always and then he reached for my hands. I often hold his hands when my ears get sore from a days worth of poking. But he didn't want to hold hands! He picked up my hand, found my pointer finger and stuck it in my ear!!! I have no idea why he loves ears so much but I guess he was trying to show me! I still don't get it by the way! I tried taking my hand down and he'd grab it back. I tried just putting my finger near my ear but nope, it had to be in my ear! He tried different fingers but always went back to my pointer finger! I thought I might have to lay there with my finger in my own ear until he drifted off to sleep but he finally decided he wanted my ear back to himself!!!

Here's a pic from last week. We'd been shopping at Target before school and he took a nap in the buggy. He started off in the seat part of the buggy but threw a fit so I moved him to the back. He rode happily and then got sleepy. I propped him up on his backpack and he got comfy! He always pulls his shirt up over his belly so he can play with his button or belly button while he goes to sleep. Of course, he really prefers ears but buttons and belly buttons will do in a pinch!

And my Daddy "MacGyver"ed a wheelchair for Asa! Who doesn't have extra bycicle wheels and car seats laying around?! We are trying different seats and a basic stadium seats seems to work best. As soon as we put him in it he pushes off but then he toys with us and won't go anymore! I don't know why he won't perform with all of us standing around staring at him with our cameras out?! And this is actually Daddy's second project. He also put a car seat on a furniture dolly (mover) and tied a rope to it! Now there is entertainment for the big kids who pull Asa around and for Asa who gets to ride! I have one smart Daddy!!!

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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!