Guest Post: Crunchy,Salty,Tangy,Spicy,Bitter,Sweet

This is a guest post by an inspiring member of "The Special Mommy Club."

Tulpen's blog can be found at http://tulpensbadwords.blogspot.com/ It's SO worth reading!

Owen was around 7 months old when I first tried to feed him. He'd reached the
milestone of holding his head up, so I called up his surgeon and told him I was
going for it.

Gerber Rice Cereal was my choice.

I didn't expect him to play baby bird and open wide for that spoon. He did open wide. He stuck out his tongue and pushed that spoon away from his mouth like he meant
it.

He meant it.

I called in Early Intervention and went on an online fact finding mission. I backed up and away from food and focused on desensitizing his mouth with brushes and knobby things and chewy things.

I read articles aloud to the Early Intervention Occupational Therapist as she did exactly what I'd learned NOT to do to Owen. She force fed him and tricked him and made him even more afraid of food.

I fired Early Intervention.

That winter, the retching started. The Fundo had bundled his
stomach up so tight so that no food could come up. No air could come up either.
Twenty or so times a day he'd retch, minutes at a time, until I emptied his
stomach of food and air with a giant syringe. A few times a day he'd turn
blue.

I kept up with the brushing, poking and prodding, but gave up on actual food.

At 16 months or so, we met Micki, a Speech Therapist with a
specialty in feeding therapy. After a couple months, she had him taking tastes
of purees. At 18 months, he would eat half a jar a day.

Then his stomach
slipped up into his chest and he stopped doing even that. Surgery put his
travelling tummy back where it belonged, but all the progress he'd made was
erased.

Micki had to start from scratch but would never see their prior
success.

Frequently he would throw his food all over Micki, or me, or all
over the room in general. He shattered plates and bowls and toys.

At Owen's three year check in with his surgeon, Owen was licking things;
cookies, crackers, chips, chicken wings even, but no biting, chewing and
swallowing. Rusty assured us that 99% of kids like Owen are tube free
by age 5.

Owen's life had already been lived in the 1% zone, so I
took this to mean we'd have that tube well past his 5th birthday.

Micki gave up on Owen when he was almost 4. She gave us the excuse that insurance wouldn't pay without progress, but I believe that she knew he was out of her league. She was right.

At four and a half, we met Chris (cue angels singing), and I had a
feeling, as Mommy's usually do, that she was The
One.

She admitted that Owen's was one of the more severe cases
that she'd seen. She was confident that she'd get him eating.

She started
from scratch with oral exercises and a reward system that Graham understood and
enjoyed. A behaviorist came to our house to set up a home
plan.

A PLAN. We'd never had one of those
before.

Plans sometimes work.

Within six weeks he was willingly eating purees. Eight weeks and he was eating peanut butter out of the jar. A couple months and he was chowing down Veggie Stix.

She introduced him to every taste and texture. His jaw muscles strengthened. His
swallow improved. He gagged less and less.

I rejoiced over a plate of nachos.

Every week he'd eat more. Actual preferences emerged; tomato sauce, salsa, ketchup
(yes, a culinary theme also emerged), mustard, cheese.

He learned to manage thin liquids without choking, first with a syringe, then sippy cup, straw, and open cup.

Normal meals disappeared from his plate. Chicken nuggets and fries.
Mac & cheese. Lasagna. Grilled cheese and tomato soup.

He ate enough to back off on his tube feedings. He's learned what hunger feels like, and how to make it go away.

He's learned what being too full feels like, and how to avoid that too.

He hasn't had a tube feeding in more than a month.

He's gained over a pound.

Friday was our last visit with Chris. She had a cake for Owen, balloons for both kids.
Gifts were exchanged.

Tears were shed, especially after she opened this framed picture of Owen


Owen didn't understand why we had to hug Chris goodbye, or why Mommy and Chris were crying.

He didn't understand what a huge accomplishment he'd made.

Like any other kid, he just wanted to get home and play, and eat
more cake.

And like any other kid, he got up the next morning and ate a bowl
of broccoli for breakfast.