Wednesday, October 12, 2016

Feeding Therapy: Day 2

Today was our first full day of feeding therapy boot camp.

Jonathan arrived with plenty of time to play a little before his first therapy session. But instead of playing he mostly just STARTED to play and then threw mini-fits here and there.  It took me about ten minuted before I realized that (DUH!) he was STARVING. I had one hangry kid on my hands.

The first feeding session reflected all his hanger. The therapist worked with him one-on-one in a room while I sat with another therapist behind the one way mirror. Jonathan got very mad at the therapist any time the task was anything other than him feeding himself a graham cracker or her helping him with his water cup. If SHE TRIED to feed him ANYTHING, yogurt, cheese, or even his favorite food -- the graham cracker -- he'd melt down. If she OFFERED him any food other than graham crackers, he would ask for graham crackers. If they were withheld, he'd melt down. He flung his arms. He shouted "stop it," he begged to be let down.  It was a short session, only ten minutes, but it was hard to watch.

The rest of the day, however, was fabulous. After that initial assessment, they knew EXACTLY where they needed to start with Jonathan, so the next feeding session would mark the beginning of therapy. And for him therapy will start at the VERY beginning (more on that in three paragraphs).

In between sessions the child life specialist took Jonathan aside to decide what the most incentivizing toys would be for him. There was a clear winner. The boat that had holes in it where balls could go down a ramp. I don't have any better name for it, but here (click) is a picture of it. That boat will be the key to his future caloric intake.

And, just so that we wouldn't ever be bored, between sessions I was also pulled aside by the dietitian. She went over all the new supplies we needed to buy (I'll be online shopping soon -- don't have time to go to the store for these things) and gave us an overwhelmingly large packet potential recipes for future meals.

And then there was plenty of time for play. Jonathan hung out with hoola-hoops and friends, ran up and down the hallway, took a toy car for a drive, and snuck in a little "school time" (we practiced matching shapes and saying / pointing to the letters in his name). Then it was time for the next session.

The second feeding consisted of no food. The therapist started at the VERY beginning. For Jonathan that meant that he allowed her to come near his face and trust both her and the process. First he got to play with that fantastic boat while sitting in the therapist's lap (because he refused his therapy chair -- it reminded him of the morning session). After a few minutes, he realized it wouldn't be all that bad, and he let her put him in his specially designated feeding chair. Then it was work time. Today that means the therapist touched his cheeks for one count. Then he played. Then she said "work time, then play time" and again touched his cheeks for one count. After a time, that moved up to three counts, then the under-the-lip hold for one count, and by the end of the session, he allowed her to hold under his lips for three counts while sitting calmly in the therapy chair. He was a fan of the play time, especially since she would also sing songs to him during these reward periods. He didn't mind this session at all, once he realized the boat would always come back to him.

Then, after we gavaged his lunch, it was nap time. He napped well and hard. I had to wake him for his third feeding which was basically like the second, only the whole time they worked on the under-the-chin-three-count-hold, and he wasn't as tolerant. Their goal was to get him to a. not resist and b. keep his head up. He struggled with both. Sometimes he'd be a champ and super easy going, other times he was in the middle of a REALLY COOL idea with the boat, and he was REALLY REALLY upset that she was stopping him from playing, so he'd melt down and say he wanted to get down and go home. He learned that he couldn't win, that he had to sit for the count, and that if he complied, he got the reward sooner. He was also reminded him that he got to go as soon as the timer beeped.

If any of you have had to potty train a stubborn toddler, you have some idea of the psychological game that was being played in that room. Only, gratefully, these are trained therapists. They're really good at keeping their cool and, ultimately, winning for the both of them.

Once the blessed beep came, he ran back out to the waiting room, where I was sitting (having snuck out of the booth several seconds before) and asked him how he did. He told me he got to put balls down a ramp. He was very proud of himself.

That was it for feeding therapy.

He has a sedated procedure in the hospital tomorrow morning, so we went straight there from therapy so that he could be hooked up to IVs (something he has to do any time he goes off liquids, because of his genetic kidney disorder). So, no updates on feeding therapy tomorrow. Expect more Friday.

He is starting to get the grove. He truly LIKES the other kids in the program, and didn't even hit any of them out of excitement today. Instead he just ran around with them and laughed animatedly. Definitely a "win" for all.

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