Celebrating Inchstones: Climbing?!

Friday, May 4, 2012

Climbing?!

This was the scene I watched unfold when I picked Asa up from school today. He was sitting with the class at the table having a snack. As they finished their snacks the kids split up to go play. Asa scooted his little red chair back from the table several feet. Then he stood up using the cubbies for support!! He did a little bit of cruising before his teacher reminded me to take pictures!

Apparently, pulling to stand and cruising weren't enough so Asa decided to try and climb into the cubbies! This dance went on for a few tries!

Not having much success in the turning around and sitting department Asa began looking for help.

Yep, his hand is blurry because he's waving the "all done" sign.

Receiving no help from the gawkers and paparazzi around him, Asa decided he'd just have to shuffle back to his seat on his own.

I didn't get any pics of him sitting because a friend came to sit beside him in the cubby and I didn't want to use his pic without permission. I guess Asa will have to conquer cubby climbing another day. I should have put that in his IEP!

And you know how a kid sometimes falls in love with a certain toy or movie and you'll borrow it for a day just so the child will leave without drama?! This rarely happens with Asa because he has little attachment for toys, however it did happen at school one day! We had to borrow Asa's teacher's empty pill holder!! He found it on her desk or in a drawer and loved opening and closing the tops. He was determined that he wasn't putting it down and even tried to walk down the hall holding it and his walker! I was NOT allowed hold it! I'd offer and he'd pull it away from me, holding it high in the air......much more preferred way of voicing his opposition that the squeals he usually does. I finally attached it to the walker with a carabiner and he walked happily to the van with his pill sorter dangling from his walker! Funny thing though, once we got home the pill sorter lost all it's magic and was quickly discarded for other random household objects! Thankfully there was no tears when we returned it today. Anna took this pic in the van, on the way home, as I said "do you love you sorter?"! His hand is at his face in a "hug" motion. Pretty smart guy......well other than having a pill sorter as a BFF!

1 comment:

marie clare said...: Awwwww Asa has the same sign for hug as Ryan has; May 5, 2012 at 7:35 AM

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!