Celebrating Inchstones: And the streak ends...

Tuesday, August 10, 2010

And the streak ends...

Sort of.

Asa puked today! First time in 2 weeks. We haven't used the tube in 2 weeks either, until today. He has eaten real breakfast every morning for a whole week. Even if Sunday it was pudding while he was distracted in the tub. This morning I actually let myself have a thought about not having the tube anymore. I knew I shouldn't have thought it out loud. I don't really mind the tube being around. It doesn't hurt anything. It doesn't take any extra effort. We've been blessed to not have to deal with too much granulation tissue.

But today zapped me back to reality! I think Asa overheated and that is why he got sick. It was hot here today and we had several in and out errands. No time for the van to cool off in between stops. We got to our last school pick up and Asa started puking. Apparently I've lost my game cause we made a mess!!! I have to say when he was on a 100% liquid diet it was liquid in and liquid out. Not a big deal for me. Solids aren't so easy!!

Once we got home he got sick again and had diarrhea 3 times. Something sure caused his tummy to revolt. I still blame the heat. He is fine now so I don't think it was a 4 hour virus! This is just further proof that Asa's GI system is a picky thing! There is a fine line and if you cross his body, the GI system will revolt! And that ain't purtty!

On the plus side and something totally different for Asa, all of this didn't deter him from eating and wanting to eat!!! He is so interested in food lately. He has always loved plates, bowls, cups, spoons, forks but not the food!!! Then last week he started trying lots of stuff on our plate. He opens right up for it. And tonight at supper was no different! He had mashed potatoes, peas and even mac and cheese.

By far his most amazing interest involved bananas today!!! At the grocery store he pointed to them. This in itself is amazing enough. I picked a bunch out and sat it in his lap so he could investigate. We play touch and feel at the grocery store a lot. This may be why it takes me forever and a day to buy groceries! He usually rejects the object after just a few seconds and a pat or poke if I'm lucky. But today he really, really liked the bananas! He held onto them for so long. He was only slightly distracted by the plastic baggie I put the green pepper in.

As I loaded the groceries in the car I kept out one banana in hopes he'd try it for a snack as we waited in the school pick up line. This is his usual mid afternoon snack routine. Today this is also when he puked all over everything. So the banana wasn't even brought up! When we got home however he picked it up and started playing with the lone banana again. I decided to give it a try.

Asa played with the open peel. He poked at the exposed banana. He "smelled" the banana in my hand. He let me put pinched off tiny bites into his mouth. He licked the banana while I held it. He held the end of the banana still in the peel and twirled it around. He was having a good time with his banana! Until he puked again! I think he just got choked up on a piece that was on his tongue. And even after getting sick he opened back up for another pinch!!! That is amazing!!!

After he had his PJs on and he night time cup of Pedisure, Asa started scooting around the house. He scooted into the kitchen and started playing with the bananas again!! Cade or Gracie prompted him to start scooting back into the living room with a big bunch of bananas. It was a sight. Someone finally broke off just one banana for him. I rocked him to sleep while he held the beloved banana. I tried taking it away but he clamored after it. And he doesn't clamor for much so I decided he must REALLY want to hold that banana. I didn't let him sleep with it though. Last night he went to bed with a sports jug lid! Why he won't have a "normal" lovie is beyond me!!!

So all of the that boils down to:

Asa was eating good.

Asa got sick.

Asa still eating OK.

The end!

1 comment:

Christina said...: I have LOVED the last two posts (well, except for the puking part of this one). That boy never ceases to amaze me. You know its great when a healthy child reaches all those "milestones" but its so much greater when those children that their parents have been told "never" reach those milestones!

You know at Target they have this game called bananagrams or something like that. The case for the game is a banana that zips up. You could buy that game, take out the game pieces, fill the empty banana case with something, and Asa would have a sort of normal lovey! Haha!; August 11, 2010 at 8:26 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!