Tuesday, October 11, 2016

Feeding Therapy: Day 1

Jonathan started intensive feeding therapy today. It's best described as a feeding boot camp.  All day, every week day, for about two months, Jonathan will learn to overcome his fears and challenge his body to perform feats he never knew he could.

Today was: Exciting and exhausting.  It was only a half day, but I'm ready to sleep (and it's only five and the laundry isn't done yet.)

First Jonathan played with trains and I filled out paperwork and discussed procedure with the social worker.

Then Jonathan and I unpacked things into his room, a small and well-insulated room with a pack-and-play, two chairs, a side table, and a cupboard with a lock. Jonathan discovered that the light switch was a dimmer. As I tried to unpack the items we'd brought from home, he worked REALLY hard to keep the bedroom ALWAYS dark. Did you know that the time it takes to get from the lightswitch to the cupboard in that ridiculously small room is ALSO the amount of time it takes for Jonathan to move the dimmer switch from the "full on" to "pitch black" setting?

When we were (finally) done with THAT delightful game, Jonathan drove cars up and down the wall and we got acquainted with other families that are a part of the program. There are about four or five other kids enrolled right now, so it's a small program. But intense.

At the prescribed time we were escorted to a room where they carefully weighed everything I was thinking of giving to Jonathan. I fed Jonathan in a "normal way" while people stared at us through a one-way mirror. Jonathan did not know I was there.

Jonathan was a champion. He ate two or three ounces of graham crackers, downed four to six ounces of water, and even had a few bites of apples. He didn't refuse anything and kept eating for about fifteen minutes or so. We chatted about this and that. It was a delightful, and perfectly normal, toddler experience. At the end they weighed the food that was left, did a little math, and charted his consumption. OUNCES, entire OUNCES were consumed.

The experts behind the one way mirror asked if this was typical. I confessed it wasn't. I confessed that he only this week decided bites of apples were okay, and the novelty hadn't worn off so he was still willing to take those small tentative bites. And the graham crackers?  They're his manna from heaven. And if, like manna, he could live off of it and only it, he would.

He went down for a nap in a pack-and-play in a side room that would be "ours" for the next two months. I put a dinosaur sheet over the top and told him it was a tent. I hoped that he'd decide this was "cool" and NOT "baby," because they'd run out of beds and this is all we had. He actually slept. We'd only been there a few hours, but it was a LOT to take in.

I spent a half hour reading over entrance paperwork and then went into a forty-five minute conference to discuss how things had changed with him since they saw him last April.

When Jonathan got up, it was time to eat again. This time cheese (an old favorite, but not a NOW favorite), fishy crackers, and kidney beans (again, something he USED TO eat) were on the table.

He ate three bites of fishy crackers. As I offered the other food, he neatly put the beans and cheese into a container that I think he decided was his "no thank you" spot. This is A HUGE WIN as he would have, in years past, tossed it and thrown the HUGEST fit about me even THINKING about giving it to him. So "yea" for us there.

He then downed two ounces of water, got mad at the water cup for being empty, and tossed the cup and threw that fit. It was short lived, only about fifteen seconds, but it marked the end of our second feeding experiment. I tried to feed him any of the options one more time, but he wasn't having any.

"So was that more like a typical meal?" asked the woman behind the mirror.
"Yes" I responded.

And she didn't even weigh out the food to see how much he'd eaten.

THEN it was time to sit in the family room again and gavage (feed by g-tube) the rest of his meal.

By this point Jonathan was REALLY REALLY excited about his new school. He had the hugest grin on his face and his eyes kept flashing at everything. But mostly at the two kids, about his age and size, that were playing with the car ramp that HE, just hours before, had ALSO been playing with.

"I want OUT!" he implored.

And I told him he need to get the rest of his meal. I guess I'm mean like that.

He thought it would go faster if he would repeatedly hit the feeding tube, faster and faster, with his hands. He made a REALLY big show of it, so the other kids would notice. He did it even more when I told him to stop, when I reminded him that all that splashing in the tube would not ONLY make it go slower, it would also make a mess. He timed his shots perfectly so, just as I took my hand off the top of the tube to add more milk, SLAM, the tube would be hit and any remaining milk in the bottom of it would GRACEFULLY arch its way over our heads to the floor. "A RAINBOW!" he declared, with a wide grin.

He was having the time of his life. All restraint had been abandoned to the excitement of the moment. So when I let him down to play nicely while I packed up the rest of our things for the day? He very quickly found his way to the two kids, and decided that ROUGH HOUSING was WAAAAY more fun than "playing nicely." He wanted to make himself KNOWN.

So he earned a time-out, and I was yet again grateful that he had his own room.

We got home, I wrote this, and then I promptly went to bed... in my dreams. Really, I started packing for the next day (we have an overnight hospital stay tomorrow night, not feeding related, but it'll start once feeding is done) and doing laundry and dishes.  Oh, and maybe saying "hi" to the other members of our family.

We're tired. And the actual THERAPY hasn't even started yet.

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