Celebrating Inchstones: Spring fever!!

Sunday, March 10, 2013

Spring fever!!

We had the BEST day yesterday! The sun was shining, the weather was perfect and we enjoyed it so much! Asa loves being outside and he stayed out almost all afternoon. I couldn't believe how much stronger he was than even just in the fall. I think we are all ready for the sunshine and warmer temps!!

He rode his Power Wheel around with purpose! He'd turn so he could follow Gracie on her bike. He ride right thru the middle of our batting practice even though he had the whole yard to play in! It was so funny to watch he head right for a tree and then turn so he barely missed it at the last second.

And Asa was brave! He wandered all over the yard but he knew to hold hands in the rough and uneven places. He tried out the tire swing but that required too much coordination! He tried though, even on his belly!! He made it out broken down tree house and climbed the ramp to go up. And it's a steep ramp! He did it several times!! It made me wish the old tree house wasn't rotten. I think he would've loved to get inside!

With all that hard play, he slept until 7 this morning! That doesn't seem late but he's been getting up at 5am the last few weeks! Every morning at 5 or 5:30! He got up and his cheeks had a nice red glow from his adventures outside the day before. He was super gaggy and whiney though. He also didn't drink all of his breakfast cup or eat his bacon. I stayed home from church with him and he was super cuddlely but I didn't complain because I loved the cuddles!

At lunch, he laid his head on the table and wouldn't even eat his pudding! No bacon or pudding....clearly he wasn't feeling well! He was also pale and warm (though we didn't take his temp). He cuddled with my mom (who also didn't complain about extra snuggles!) and then came home and took a 2 hour nap. I woke him up at 5pm. He was not pale or warm but he wasn't very active either. He laid on me or in the floor for most of the evening. I hope he just had too much fun yesterday and needed a restful day today to make up for it!!!

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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!