Celebrating Inchstones: Asa the Adventurer

Sunday, August 15, 2010

Asa the Adventurer

I usually wouldn't use the words Asa and adventure in the same sentence. Probably not even in the same paragraph! He just isn't a go getter!! He has never had a desire to try new things. Not new foods, not new routines, not new people, not new skills, not new toys. Nope, Asa has never been one for adventures!

Until lately that is! He has really been more interested in food than ever before. He usually tries a bite of whatever we are having. Yesterday I made chocolate chip mini muffins for breakfast and was giving him pinches. He had taken several pieces and seemed tired of it so I stopped and went on back to the computer. After playing a few minutes he started grunting at me. When I looked at him he pointed to the muffin laying in front of him and wanted more! Ha!!! I happily obliged even though he could have asked a little nicer! :) And he was more than able to self feed the bites I had for him!

Today took the cake though! After lunch at my moms, Asa was a happy scooting boy! It was a loud house today too! It was too hot to go outside so all the kids were inside and loud! Asa was fine with the noise. Never bothered him once! He scooted and played. He played with the Connect Four game. He scooted himself into the box!! I didn't see that and I wasn't totally convinced he didn't have "help" getting in but everyone assured me that he did it himself! He also quietly (sneakily?) got the Monopoly money from the banker and had a time scattering and playing in it until he got busted!! I was so proud of him today! He handled lots of noise and excitement. He was entertaining himself. It was a great Sunday afternoon!

Once we got home he did get sick though. I don't know what set him off but he lost it. I left him with Barry and went on to church. When we got home Barry was in the kitchen and Asa was no where around! This is the tale Barry told...

After Asa woke up from his crash, he was busy sitting on Barry so Barry put him down so he could play. Asa scooted over to his toys and was playing happily. Until he pulled a lamp over! The lamp got caught on the treadmill so it didn't crash but it spilled dead ladybugs out all over the treadmill! As Barry is picking up the lamp and getting it secure and arranging the toys, Asa scoots over to play in the dead ladybugs! GROSS!! When Barry gets him out of that mess, he notices that Asa is dirty and so is the floor! And no poopy diaper story would be complete unless the shirt got so dirty that it had to be cut off and much wiping took place to get Asa back into the clean!! So now Barry has to clean the changing area and the floor! He sits Asa in the kitchen floor while he mixes up the carpet cleaner and goes into the living room to clean the carpet. When he gets done he notices that Asa isn't in the kitchen anymore but in our BATHROOM!!! Asa has never ventured into our bedroom, much less our bathroom! And that is when we come in from church!!! Asa squealed with delight when the big kids found him in the bathroom. Like he was leading a game of hide and seek! So cute...for me, I missed the mess this time!!!

I would have never thought Asa would get into so much trouble as he did today. Just a busy exploring boy! Now I'm not so sure if I'll be this thrilled with this new Asa the Adventure by this time tomorrow!

1 comment:

Anonymous said...: Sounds like ya'll are going to have to put a leash on that boy, lol...just kidding! I just can't get over all the progress he is making...it is so wonderful :oD; August 16, 2010 at 12:11 PM

Post a Comment

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!