Celebrating Inchstones

Monday, September 26, 2011

I keep hearing this song. It's based on the biblical story of Naomi and Ruth. From the first time I heard it I thought of Asa though. Maybe you'll agree, maybe not, but I thought I'd share.

Asa has had a few fun filled days. This is his kind of weather! On Friday we had an early morning appointment. Since Asa tires so easily I try not to plan much before school. Sometimes I have to take whatever appt is available. After the appt and a disappointing trip to the pharmacy, Asa had gotten tired and was in the middle of a huge gagfest and meltdown. Instead of taking him across I decided wed skip school, rest and reset and then have a picnic at the accessible park. The weather was wonderful. Asa dozed off on the short drive over. After he woke up and we had a picnic we set out to play! The playground has 4 ramps. Asa spent the next hour pointing at ramps that he wanted me to push him up and down! And he didn't want to stop! I got my exercise! I also made him do some pushing so he could build those arms!

After the park we went to the grocery store for a few things. Asa pointed to the bananas and after he signed "banana" I gave him one to hold. I was surprised when I turned around and he had peeled it open!! I didn't know he could do that! I felt a little odd explaining to the cashier that I'd let him eat one and why it was exciting. She was great though and cheered along with us!

On Saturday we had a family reunuion. Asa kept trying to roll put the doors to play outside. He couldn't get over the threshold but after the great banana event I was afraid to take my eyes off of him! He did spend alot of time pointing so I could push him around outside!

On Sunday Asa went to big church, not the nursery or Children's Church. He did reaaly good. He was very quiet but early on he handed me his talking cards (PECS) and showed me "home"! Ha!!! Then he gave me the "drink" card 3 times so I took him out to get his cup. Once we got to the other room though, he just wanted to play! Faker!!

After church and lunch, he hung out with my dad. I'm not sure what all they did but they were outside for hours. Asa must have been worn out because he slept from 8:30 last night til 11:30 today. Soooo, he missed school again today! Probably a good idea too. He spent 2 hours trying to poop! No kidding 2 hours! He was drenched in sweat and tonight he has petechia on his face from pushing. It was awful but I'll spare you the details. I'm sad to say he only produced a tiny amount so he'll have to redo the process again. I wish we could come up with a good plan so this doesn't have to happen every few days.

Sorry if that TMI but its just how we roll here!

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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!