Thursday, October 27, 2016

Second full week of Feeding Therapy

The battle of the wills continued last week. At the meals he kept being asked to open his mouth. That was it. Just big quiet opens. He did that zero - that's right, no - times at one meal. Instead he double-downed on all the violent resistance he could muster. The timer beeped after ten minutes and then, after a very long minute or two, he finally opened, and then therapy was done. I believe this was last Thursday (so day 7).

The second meal that day, he opened once within three seconds. A second time within fifteen. He fought a little after that, but did great. They instituted a new therapy tool to further motivate him. But more than that, it was that the fight had been fought and he saw he couldn't win. So he let go all attempts to control.

By Monday (day 9) he was doing nice wide opens without much resistance and they were able to introduce a straw to the picture. He did great with that, so on Tuesday (day 10) they introduced actual liquid in the straw. He has to keep his mouth open while they insert a small amount of the milk/yogurt mix into his cheek. Then he closes and swallows when they say "close."

The psychologist and I sat on the other side of the one way mirror on the meal where the first tastes were introduced. I watched him stare hard at the bottle, previously empty but now at this session with formula/yogurt in it. "Do you think he notices the liquid?" she asked. "OH YES," I responded. And then we watched while the therapists re-established his wide opens and his acceptance of the straw. Then she moved to putting a taste in his cheek. On the other side of the mirror, we waited for the melt-down to begin.

He gave her a funny look. He swallowed.  And then he went to play with the toy he gets as a reward for his work.

The psychologist and I stared at each other in disbelief. "WOW!" we both said.

He has had yogurt before. He's had this milk formula before. These are not new foods. But the therapist had total control, and that WAS new. And he was OK with it. And that was shocking to us.

The last two days have involved slowly increasing the volume of that drink. Today at his largest "meal" he had 20 ccs. That's less than an ounce. But it was SOMETHING.

He doesn't like getting the milk/yogurt in his mouth, but he accepts it.  They're still practicing nice wide opens without food so that if he does regress, there's a firm foundation still established. Every other bite is a real bite, though, and he's doing GREAT.  He takes the milk in his cheek, closes his mouth, swallows, and then says (sometimes more loudly than others) "NO NO NO NO." And then goes and plays with his toy. Resistance, yes. Displeasure, yes. But acceptance.

One of his new friends at therapy school declared, as soon as she heard about his good meal, "OOH!  He did good work! That means he gets to go see the fountains!" Fountains are J's favorite. Fountains, waterfalls, oceans... you get the idea.

It was so super endearing that she remembered this that we decided we'd ALL go see the hospital's fountains as a reward for J's good work. So the little girl, her mom, me, and Jonathan all made a trek to the fountains a few blocks away. It felt nice to be able to reward him.

Next week they will introduce the spoon.  THAT will be where the real battle begins.  But this week, and even (especially) last week's struggling, has paved the way for success when that step is introduced. Spoons, and the things held in spoons, are by far Jonathan's least preferred way of getting nutrition. But they are also what we will be doubling-down on in the future.

We are encouraged.

And, as an unexpected bonus, yesterday, for the first time in history, our child opened his mouth willingly for his nightly tooth brushing.  He even said "ah!!" when he saw the toothbrush.

It's been a good week.


  1. Prayers for you all are part of my daily morning walk -- and I am thrilled to hear of J's success and accomplishments. Hallelujah -- and pass the potatoes (or whatever J would like)!

  2. Thank you for sharing this journey. You've all been in our prayers! Glad this week had such good work!


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