Celebrating Inchstones: Inchstones, inchstones and more inchstones!!!

Tuesday, February 8, 2011

Inchstones, inchstones and more inchstones!!!

This has been a pretty exciting few days. In little ways but each little thing is HUGE to me!

Yesterday, I was on the treadmill and Asa had been playing on the couch. After a while he got bored and wanted down. I was trying to tell him to lay down and slide off. He understood what I was telling him but he wasn't about to slide off the couch by himself! Once I got done I helped him down and we did it several other times. We've also worked on it today. He is almost doing it on his own now!!! If he is sitting with me then he will roll over and slide down. If I'm not sitting next to him then he is more hesitant! Still this is progress!! Huge progress! I'm sure I won't be so excited when I can no longer put him in the chair and trust that he'll be there when I turn my back!

He also cruised along the couch 3 times with no one helping him. In fact we weren't even trying to lure him! We were just hanging out with him standing at the couch (inchstone enough that he'd stand up alone!) and then he shuffled over to me! So fun!!!

And....can you believe there is an AND.....Asa has been going from sitting to laying down on his own. He can sit fine but he can't get into or out of sitting alone. So he had been laying down on his own when Gracie taught him a trick! She holds her finger like a gun and says "bang, bang" and he falls over and lays down!!! By the time I got my camera out he was so gigglely that he just wouldn't sit up at all! We were all cracking up!!

And another AND! Asa ate a whole Gerber Entree meal!!! It was mashed potato, gravy and carrots. He can't really handle the chicken so good but I did chop up 2 pieces and he got them down. He starts out really chewing but slows down so much and by the time I call it or he signs "done", he is just rolling the food around! Oh and did I say it took him 2 sittings to finish it? He had part of it at lunch and part at supper. Still it was one less cup of pedisure for the day!

Hmmmm, that may be all for now. There are other improvements like he is humming and grunting more. Kinda like a conversation I guess. Still no words but he sure thinks he is telling us stories sometimes.

And he is steadier when we hold his hands to walk him. In fact he will squirm away from our carrying him so he can try to walk! I've got his gait trainer stripped down and I'll have to take a pic of him to show you!

He is also obsessed with our barstools and the aquarium on the bar! I mean OCD obsessed! So much so that we took the barstools away! Gotta find some cheap ones with backs and sides! He loves sitting up there!!!

So I guess this has turned into a pretty long celebration! Praise God!!! I've got videos but I can't load them onto YouTube until I get WiFi, so be patient! Of course the videos are 5 minutes of us coaxing Asa or him hanging out and then 5 seconds of his skill! That's ok though!!! They are priceless!!!

To God be the glory!!!

1 comment:

gg said...: To God be the glory is right!!! Such huge inchstones. I'm so excited reading this post. Following his journey with you guys for the past couple of years has been a blessing...give Asa a kiss from me and Bricen!; February 8, 2011 at 11:32 PM

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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!