Luke and I are now half-way through the day patient feeding program at Our Children’s House at Baylor. We’ve finished three out of five weeks of the program. While things are different than maybe I had expected, I’ve been pleased with the people we’ve been working with and pleased with Luke’s progress so far.
Maybe now would be a good time to describe how a meal feeding Luke used to go. Because the difference has made me feel so much better about our outlook on this aspect of Luke’s care, even if we don’t accomplish all of our goals within the feeding program itself. It used to go like this: I’d fallen into the habit of only feeding Luke a meal orally maybe once or twice a week other than when his speech therapist, Cherish was around. I eventually found feeding Luke to be too huge of a hassle to do by myself. We’d both go away frustrated and mad, and having not accomplished anything. Then I would feel guilty for not working harder at feeding him because eating is a skill he needs to learn so desperately. Before we’d start a meal, Luke would sometimes cry or fuss even before the meal began. Then I would sit down and we’d begin by me trying to get him to open his mouth: “Come on Luke, let’s take a bite. Mmm. Good bananas. Let’s take a bite. Come on Luke, open your mouth. Say “ahhh,” etc. More often than not, Luke would just hold his mouth closed. If I could get him to laugh (or even cry, I’m somewhat ashamed to admit) enough to sneak a bite on his tongue, then he’d start the gagging and coughing. Or if he didn’t gag, it didn’t matter, because he would push 100% of the bite I’d just put on his tongue out of his mouth and onto his bib. Every time. Then there’s the hitting. I avoided feeding him carrots or chocolate pudding because he’d hit the spoon and food would go everywhere: hair, clothes, floor, stuck to the wall, you get the idea. I’d also get slapped in the face. A dozen times per meal Luke would also pull off his HME, and I’d have to go retrieve it from the far corner of the kitchen. Feeding Luke in his high chair also puts me in a perfect position to get kicked in the chest anytime Luke felt mad or felt like playing or felt like delaying the bite I was trying to give him. All the while, I’m trying to hold it together, to scold him when he misbehaves, but not too much because I don’t want him to develop any more of an aversion to eating than he already has. I could usually do this for 20 minutes max before I was completely done and not up to doing it again on my own for a week or more. It was just too hard.
The program at OCH started Luke back very near to the drawing board. They introduced to us a pattern of reward when he does what we want him to do, and a combination of withholding reward and ignoring negative/avoidant behavior. For instance: there’s a TV in each feeding therapy rooms. When Luke successfully takes a bite or allows his therapist to do his oral stretches, he gets to watch a show and/or play with a toy for about 10-20 seconds. Then we pause the show, put the toy in our laps, and encourage him to take a bite. One aspect of the program that I love is that they set a timer for 20 minutes for each meal. When the timer goes off, the meal is over. It’s kind of like a “saved by the bell” for both of us. It makes it much less stressful, and I don’t have to feel guilty that I haven’t worked with him long enough. We ignore avoidant tactics like pulling off his bib, or throwing his HME or his toys. We’re communicating to him that, “It doesn’t matter what you do. Right now we’re eating, and you’re not going to distract me from feeding you. Take a bite, and then you can watch more Super Why.
Almost without even noticing, we’ve moved from me feeding Luke once or twice a week to 2-4 times a day. Using these basic hints to modify his behavior has helped tremendously.
Here’s how our meals go now: Frequently throughout the day when we’re home, Luke will point to his high chair, say “Eee” (“eat”) and sign “more.” Yeah. For real. I turn the movie on (thanks for the iPad, mom and dad!) and set the timer. Pause the movie. I tell Luke “take bite.” He opens his mouth. I say, “close lips.” He closes his lips around the spoon. I say, “Swallow to your tummy.” Luke swallows immediately about 90% of the time the rest of the time I might have to repeat the command once or twice. And about 75% of the time, he swallows all of what’s in his mouth without pushing it out. The whole process takes about 5 seconds. I’m still amazed.
We’re working very hard on helping him learn to manage the amount of food that we give him with each bite. The therapist’s theory of why he was pushing everything out of his mouth is that it was half habit and half that he was feeling overwhelmed with the amount we were giving him. This is where we scaled way back. For about a week and a half, we’ve just been feeding him chicken broth. We’re only dipping the spoon into the broth to give him a taste, not giving him any broth in the bowl of the spoon. At first, even though we weren’t giving any volume, his was pushing everything out, even the saliva created by tasting the broth. With some chin and lip support and behavioral modification, we’ve worked up to giving him about a drop of broth with each bite, and he’s swallowing everything. The idea is helping him be very successful at this low level of skill, and then we’ll add volume to each bite as he tolerates it.
At times this process seems painstakingly slow, but I’m thrilled at this progress so far. I really believe that if we get no more accomplished in the next two weeks, I’m already glad we came. I feel like I’ve got my feet beneath me now, and I can handle his behavior. I feel like when the five weeks are over, I can work with Luke’s regular speech therapist to increase the volume he’s getting with each meal. It may be awhile before we are able to replace one of his tube feedings with an oral meal, but the piece of mind and the confidence I’ve received from my training at OCH is worth a tremendous amount to me.
I thank you all for your continued prayers as Luke and I commute back and forth to Dallas each day, and as we work to improve Luke’s skill level. We are very blessed to have a program so accessible to us, and to have a spiritual family like all of you keeping us lifted up. Thank you so much for your love and support.
Blessings,
Rachael
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