I got no tube to hold me down.

Tomorrow will mark week 6 of feeding therapy for Jonathan.
Today he ate all his meals by mouth.  It was our first day doing a home meal, and he did okay with it. Some gagging sometimes, yes, but smooth and in. No vomiting, no major behavioral issues, just sitting and eating (and playing) like a big kid.

He still will need his tube for overnight hydration (because of a kidney issue) but he doesn't need it during the day anymore. Let's hope this sticks!

Cheers,
Jonathan's mom

The last 2+ weeks of intensive feeding therapy

Since my last post, JAM has taken a dry spoon (seriously, and no sweat! He just DID it) and then was slowly introduced to one food, then continued to increase volume of food until it was a full spoon, then added a second and third and now (just yesterday) fourth type of puree, one food at a time with the bite sizes slowly increasing and the amount of time allowed at each sitting also slowly increasing. Bite of food, reward of preferred toy, drink, reward of preferred toy, and repeat until the meal is done. All negative behaviors have been ignored, and it's worked. Negative behaviors are now all but non-existent. (He still lets us know that it's hard. He still shakes his head, says "no," and sometimes gags -- but the incidence of negative behaviors has dropped remarkably.)

This week I walked into the therapy room for the first time. Not for a meal, just to try to see if he'd let me brush his teeth the way he's learned to let (and trust) the therapists to brush his teeth. (WHICH, in and of itself is a huge accomplishment of the last few weeks: teeth brushing with wet brush, teeth brushing with toothpaste on the brush, teeth brushing while standing at a sink, and now today teeth brushing standing at a sink with toothpaste and MOM doing the brushing instead of the therapist.)

And he did.

Dentists, this kid would be your favorite patient. If you ask him to open, and put your finger right on his chin (no pressure needed) he opens REALLY WIDE and stays open as you count a slow "one two three" and brush his top right teeth, "one two three" for the bottom right, and on for the top left, bottom left, and front top, bottom top. Total of 18 slow counts. I don't think I would have the patience or ability to stay open that long without gagging. But don't tell my son that.  A month ago we had to force-brush his teeth. He wouldn't open at all.

SO, that was huge.

And then today again, another big achievement: he ate an entire meal by mouth.  All purees: a protein, a veggie, a fruit, and a high-calorie drink.

I was on the other side of the one-way-mirror doing a happy dance.

He was so excited he did a happy dance after therapy too, all over the family room, giving hugs to other kids, dancing in circles, and then (as we left to go home for the day) working himself into such a fit of happiness and excitement that he started breathing too hard. Then coughing. Then... well, "easy come, easy go."

Oh well. At least he got it all in by mouth. Next step will be to KEEP it all in.

Then after he gets used to tomorrow's new food (so in a day or two) I get to enter the room and be a part of his meals again.  Slowly they'll transition me to being in charge of the food, and maybe by early next week we'll be able to eat plated meals at home. (Meals are plated, carefully weighed, measured, and analyzed to be sure that consistency of food is similar across the board. Purees must be absolutely correctly pureed. I failed the first three times I tried.)

So far this slow, controlled therapy is working, though. These folks know what they're doing. One month down. I'm excited to see what happens in these next three weeks.