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That's about how the last 4 years have gone for us. Even when we think we've made progress, it's often paired with some sort of regression. Anything extra that stresses her system puts her right back at square one. This is a short run down of what things are like from her point of view. Only the "treatment" options suggested here aren't appropriate for her. We've tried these things over the last several years and it's gotten us nowhere. When she started regressing a lot last fall, our speech therapist that had been doing feeding therapy suggested we take her to an intensive feeding therapy program with an integrated approach, so here we are.
When trying to understand what her day is like and what she's doing here, it's also helpful to know what assumptions you might be making that don't apply to Secora. These are the most common myths we had a little trouble getting away from at first.
"Yes," I hear you thinking, "but what do you DO?" Well, each morning, she spends her first hour with a speech therapist. This is the person that can look for and treat motor problems--trouble manipulating food in her mouth, swallowing, etc... She doesn't really have any trouble with that, but speech is always the person that introduces something new to eat to make sure she's physically capable of eating it. Speech also teaches her the new things she's going to be doing. For her, it's "eating in a circle". She will have 3-4 foods and she gets to pick which food is in which position in a divided plate, but then she has to progress step by step through the circle. So it's a bite of chicken, then a bite of peaches, then a drink of pediasure, or whatever the plate is that day. When she gets to a new or difficult food, SOS techniques are used, so she might only have to touch it, or maybe taste but then spit out that food. The choice to do SOS is based on her specific set of issues, other kids might follow a food chaining plan or something else. The eating in a circle rule is "no skips" and one of her favorite foods is always included so that she has motivation to get past the new thing(s) and get to what she really wants.
Her second hour is spent with an occupational therapist. This is the person addressing most of the sensory issues, which is the biggest problem for her. They play games to work on developing core strength because postural stability is key to being able to focus on eating, but they're mostly doing a lot of desensitizing. For instance, Secora is really sensitive to smells. If someone eats peanut butter in the same room as her, she's so distressed by the smell, she often won't eat her own food (even if it's a favorite). So OT works on getting her to tolerate a wider variety of smells. They also play with messy things because in general, she doesn't like her hands messy. Very soon, they'll start playing with new foods. Once she tolerates the new food in the OT room (with no expectation of eating it) it shows up in the speech sessions.
After OT, it's lunch time. She eats lunch with the psychologist. This is where she's really expected to eat anything that's offered. They only have foods that the occupational and speech therapist have decided she's truly capable of eating. There is a timer set and mealtime is 25 minutes or when the food is gone, whichever comes first. As long as she's eating, there is a reward going on (for her, for right now, it's stamping and coloring). If she goes too long without taking a bite, the reward stops. The psychologist will play alone without including her and remind her to "take a bite" in a neutral tone of voice at regular intervals. Since you truly cannot MAKE a kid eat, there are no punishments involved, and any negative behavior on her part is completely ignored, while any cooperation is praised. The timer prevents the meal from going on forever, but also prevents her from getting out of the meal early. She gets a break after lunch so she can take a short nap, then she goes back for another meal time with the psychologist.
While she's doing her sessions, I'm often meeting with whoever she's not seeing at the moment. Each person checks in with me after each session to let me know how things went, what they might try next and what I should or shouldn't be doing when she's with me. This is where I've learned things like her love of oranges being a big plus because it's a strong enough smell that she may be able to tolerate less "friendly" smells better if we have her smell oranges before being exposed to other things. It's also when I tell them what little quirks I've come up against (like, apparently purple grapes, which have been a safe food for years, are only a breakfast food now and can't be eaten at dinner). We talk about what we want her to eat too so they don't waste time getting her eating something we don't regularly eat at home. The dietitian also sits down with me a couple times a week and we go through her food logs. The dietitian is in charge of weighing her once a week to be sure she's not losing weight and making sure she's getting her nutritional needs met. The current issue is that Secora's fluid intake has been low ever since she was sick. I can't get her to drink both pediasure and other fluids, it's one or the other, so we've had to try different ways to balance calories with ounces. The dietitian also reports back to speech and OT and gives them a short list of foods she's really like to see Secora add, then speech and OT figure out which of those they can actually get her to eat.
Rinse and repeat, that's how it goes Monday through Thursday. She gets the weekend off. We're staying at the Ronald McDonald House, so Friday is mostly sleeping in and taking a long nap because she gets exhausted from all the therapy. She spends some time on the playground or in the play rooms at the house since she doesn't have time to do that the rest of the week. On the weekend, she still sleeps in a bit, but she's more rested up and ready to play more.
This goes on for at least 5 weeks and time will tell what sort of results we'll get with Secora, but we keep hearing from all different people how amazing the program is and what great results they get, so hopefully it works out that way for us too!