Celebrating Inchstones: Sugar and spice and everything nice

Wednesday, August 4, 2010

Sugar and spice and everything nice

I realize that rhyme is used for little girls but I'm stealing it for my sweet boy!!

I've posted before about Asa playing with dry oatmeal in OT. How he comes back to me smelling of sugar and cinnamon and brown sugar and maple syrup! Yummmmmmm! Am I making you hungry? Those are some of the best smells in the world to me.

We've changed up our therapy schedule again and Asa now has speech/feeding at 9:30am. So yesterday Mrs. Jill fixed him oatmeal! So he has been playing with dry oatmeal and now he was gonna eat cooked oatmeal. He has also been eating Gerber Lil Crunchies in cinnamon and maple syrup flavor. Do you see a theme here! We've tried oatmeal many, many times and it always produces gagging and refusal if not all out puking! We have not had much success at all. Until yesterday!!!!

Asa had over a dozen bites and was great! He was a slow eater!! But he was an eater! I'm so excited. And he even had more oatmeal at home this morning!! I didn't do as good as Mrs. Jill though. I gave him big bites and didn't really watch for him to clear his mouth. He gagged once but he worked it around and then was ready for some more! First a straw cup and now oatmeal!!! Oh, I hope he keeps this up!!

He even had 2 bites of rice crispies cereal but those mixed textures didn't go over too well. But he tried, twice!! He really like stirring the cereal!

I was so excited to post this last night but once everyone was in bed and it was my computer time, I was tired! My bed won!!

Now here is proof in pictures! I rarely get pictures in speech/feeding therapy. It can seem slow going in there and hard to capture. Today Asa was hamming it up though! I think he likes breakfast with Mrs. Jill. Next week he requests biscuits and gravy and scrambled eggs! :)

This was really a flirty face but I missed the grin so he looks upset doesn't he!

See, he was really happy about breakfast!

Asa loves the gloves so much that I considered feeding him at home with gloves! The cereal was a good distraction while he ate the oatmeal!

1 comment:

gg said...: Looks like he's saying "Mmmmm"!!!; August 4, 2010 at 11:59 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!