Asleep at the Wheel

We got some really bad news at the pediatrician's office on Tuesday. Oliver, who has been in weekly "feeding therapy" at Duke for the past 4 months has actually lost an astounding 2 pounds over the course of the past 6 weeks. He went from 27 pounds 10 oz. back down to 25 pounds 11 oz.

This news has brought on waves of incredible stress, guilt, worry, anger, frustration, more guilt, and more stress. I really thought that things were moving forward with his eating. We didn't have dinnertime battles anymore, but now I see that was mostly because he wasn't eating and we weren't pushing it. I guess simply the fact that he was in therapy made us (me) relax and stop being vigilant about how many calories he was actually ingesting. Basically, I fell asleep at the wheel and Oliver is paying the price for my negligence. I feel horrible. I feel like nothing good that I am doing in terms of parenting: teaching him to be kind to his brother, to share, to be polite, to make good decisions, to be confident and happy, or time spent encouraging him, reading to him, or singing with him or providing positive discipline is worth ANYTHING if I can't keep him from starving himself. I am beyond distraught. I felt like we were really doing well. I felt like we have such a great relationship and he is such a fantastic kid and I felt really proud of the job that I was doing but I was failing at the most basic, fundamental keeping-your-kid-alive aspect.

What was different in the past 6 weeks:
-stopped using the "behavioral approach" which was positively reinforcing every bite he took with some form of a reward (a puzzle piece, a sticker, a few minutes of watching Cars)
-started a "sensory-integration approach" with the assumption that he needed first to be comfortable seeing, then smelling, then touching, then touching the food to his lips, before he would be comfortable enough to actually put something in his mouth and chew it up and swallow it.
-discontinued Periactin, the appetite stimulant that I didn't really think was working (apparently I was wrong)
-stopped letting Ollie go to bed with a sippy cup of Pediasure

What we have to do moving forward:
-make sure that he gets enough Pediasure?
-start him back on periactin
-?????

I am fresh out of ideas. I honestly don't know what to do. He doesn't eat food. Correction, he doesn't eat enough food to support his growth. Here is the problem:
-Oliver doesn't have a strong appetite, he is profoundly uninterested in food
-Oliver hasn't yet developed the skills needed to eat effectively (chewing and swallowing)
-Oliver is really picky about what food he will even CONSIDER putting in his mouth (ie there are certain foods he can't stand to even have on his plate)
-Oliver is probably genetically a small kid to start with, so he wouldn't be a huge guy even if he DID eat.

The only thing I can think is that we are going to start back up with behavioral approach, which is so painful for me (and I think Oliver, too) because it takes everything he enjoys and turns it into a tool for manipulation and turns everything into a negotiation over food. Oh, you like playing with trains??? well you can't play with trains until you eat these bites. You like reading Cat in the Hat? OK, well you can read that book when you eat this whole cracker. The ground that we are fighting over is pathetically small. It's not like "oh, when you eat your broccoli you get to play with cars," it's "when you eat this tiny bite of brownie/cookie/muffin/pancake." Stuff that I wish we weren't letting him eat in the first place we have to bribe/manipulate him into eating. It is NO FUN. NONE. NONE AT ALL. I find myself getting so frustrated and angry when he doesn't cooperate.

I really don't know what else to do. I had a long discussion today with his pediatrician and he suggested that Ryan and I meet with the feeding therapists (an occupational therapist and a speech language pathologist who focuses on feeding issues) to discuss a concrete plan of action. He said that if we weren't comfortable with their plan or our questions/concerns weren't addressed we should look at UNC or another feeding program. He also mentioned that there are inpatient feeding programs at the Children's Hospital in Richmond and at Johns Hopkins. That would be a really awful "solution" I think for someone as tender and sensitive as Oliver. It makes me so sad to even consider sending him away to stay in a hospital. It makes me feel like we are totally failing at our jobs as parents. Like foster parents or the state should take over. I remember thinking this before, when he was really little (13-17 months) and he wasn't gaining weight at all. I had this fear that I would bring him in for a weight check appointment and the doctor or social worker or someone would take one look at his skinny little body and decide that they would have to take him away from us because we weren't able to make him "thrive." It makes me so sad to remember that period, and so discouraged to think that what I had really thought was behind us is still very much with us. ARGH!!! The pediatrician also in the nicest way possible suggested that WE (me and/or Ryan) might want to seek counseling, too. I wanted to laugh, but maybe he's right. I honestly don't think it's any of our "issues" that are at the root of Oliver's problem, but boy, Oliver's not eating is certainly creating a whole boatload of new "issues" that I could talk about in therapy.

Anyway, I thought this post was sufficiently angst-y enough to put on this blog rather than our family blog. And this definitely qualifies as something that is keeping me up at night.