Celebrating Inchstones: Top 10 kind of day

Tuesday, March 16, 2010

Top 10 kind of day

Today has to be one of the top 10 normal days we've ever had! A normal top 10 day, not a day with a lot of celebration or hoopla. Not like the day you got married or the birth of your children or the day you accepted Christ as your Savior. But a normal, regular day!! This has to be in the top ten. Let me tell you why......

Exhibit A:
We are on day 2 of no puking! No gagging. No sweating. No clingy. No sickies. No venting. No draining. That alone makes it a good day! I could just stop there but I won't!!

Exhibit B:
We made it to OT this morning. Last week Asa got sick (see the above reference) and we had to cancel. Not today though! And while Asa didn't actually eat any of the Chick-fil-A gravy, he did play in it!! Did you know that as tasty as that stuff is, it can hold blocks together like concrete?! Just sayin! So Asa played in the gravy and stacked blocks! And he signed "all done" when he was "all done". And he screamed when he was "ALL DONE"! Seriously!

Exhibit C:
Even though Asa didn't eat the gravy, he did eat new things today! He had 1/2 container of yogurt at breakfast. He had several pinches of my PB & J sandwich at lunch.....even signing "more" when we wanted more. He tried refried bean at supper. And a hard taco shell, which I only let him suck on for a second. Plus about 4oz. of juice throughout the day. And multiple handfuls of chocolate cheerios. He ate more today than he usually does in a whole week!!

Exhibit D:
Even after all the stuff in exhibit C, he didn't get sick....see exhibit A!!! Totally worth mentioning again!

Exhibit E:
Asa did some good upper body work by laying on his stomach on Cade's skateboard and pushing himself backwards!! He did a little forward but a lot of backwards!! The main thing here is that he could keep his head up off the skateboard while he pushed off with his hands. He hasn't had that kind of upper body strength, well, ever! And he didn't freak out while he was doing this!!

And there are lots of little things, like tons of laughter and silliness. Lots of dancing when I'd say the word "music". Lots of scooting. Cuddling with Cade in the recliner, making Cade one happy big brother!! Chasing Anna around while she scooted and hid from Asa. Scribbling in a notebook with Gracie! It really doesn't take much to entertain us around here!!

So, I think all of these tiny things add up to one amazing, fun day!! Maybe tomorrow will be even better!!!

3 comments:

Meghan Clement said...: Way to go Asa! Sounds like a fabulous day! I hope the great things keep up!

Love,
Meghan; March 16, 2010 at 10:28 PM
gg said...: What a happy, uplifting post!!! Love hearing Asa is doing great.; March 17, 2010 at 1:40 PM
Christy said...: what an awesome day! yay, Asa; I love hearing good reports!

Hugs!; March 18, 2010 at 9:35 AM

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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!