Celebrating Inchstones: Some Nuggets

Monday, September 10, 2012

Some Nuggets

There are little nuggets of this life that I don't want to ever forget so I'm gonna put them out there on the big ole Internet so they'll live forever!

~ A few weeks ago we went to the zoo. Leading up to the trip we talked a lot about what we'd do and see. Asa always tapped the elephant on the iPad book we read so we learned the sign for elephant and made sure to spend time at their habitat. We used the sign a lot but how often in real life do you say "elephant" so it fell by the wayside. Now if I ask Asa something and he can't remember the sign, he throws out "elephant"! "Do you want a cookie?" "Elephant"!!! :)

~ When I lay down with Asa at bedtime, he likes to toss and turn and play. When I say "close your eyes" or "it's bedtime" he lays on his side, puts his hands under his face and makes a snoring, growling noise.....and then laughs! Wonder who he hears snoring?!

~ I asked Asa to try meatloaf at my mom's yesterday. He is eating very little these days and he shook his head "no". I told him if he tried one bite I'd take him on a 4 wheeler ride. He immediately took a bite and signed "more" then pointed outside! I should've bargained with a whole plate of food!

~ When Asa was a baby (nearly5 years ago) we bought an air purifier for his room. We didn't get it to purify the air, although that wouldn't be a bad idea, but because it makes a great white noise without having all the air of a fan moving around. A month ago Barry opened the cover and the filter was still wrapped in plastic!! Now it purifies and make a white noise that puts me to sleep when I lay down with Asa.....see above snoring comment!

~ Asa loves school! If I get him dressed but sit him down to finish packing his lunch or bag, he walkes to the door and shakes the handle while fussing at me! When he ready, he is READY!

~ I talk about colors a lot with Asa. I can never tell if he fully remembers them though. Sometimes he identities them correctly when quizzed, sometimes not. Tonight, without any prompting, he pointed to his blue changing pad, my blue shirt and his blue shirt! He may not know blue but he knew they matched!

~ Asa has a friend at school who pushes his chair out for him and pats the seat or table at breakfast time. How sweet is that?! His name is Andrew and he sports a faux hawk and I could just eat him up! But it'd probably embarrass Asa! :)

~ Asa has 6 other boys in his class. His teacher was helping one of the other boys in the bathroom and left Asa standing in line with his friends. When she turned around, Asa was not in line. She looked in the hallway and he was standing at the door to his room from last year. So smart that boy! And not good at follow directions!

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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!