Feeding Team Update

Charlotte and I visited Milwaukee today for her periodic check up with the CHOW feeding team. We met with Dr. Long (behavioral psychologist), Midge Kirby (nutritionist) and Amy Delaney (speech therapist). Then Charlotte had a check up with Dr. Blank (GI).

Charlotte was hungry—we sat down to feed her at 11:40 a.m., 40 minutes past her lunch time and 10 minutes into her nap time. She drank her Pediasure very nicely from the sippy bottles I’ve been using. She pretty much refused to eat any solid food for me. When Dr. Long took over she did take some willing bites of solid food, but not many. Given that it was nap time, she was very enthusiastic and happy.

Dr. Long is concerned that Charlotte is on “solid food strike,” as I call it. She’s never eaten more than a tablespoon at a time (with one very memorable exception), but in the past few months, I’ve been lucky if I can get ½ teaspoon into her at any meal. I’ve tried the technique of boring her with the same food for a period of time. It worked once for a brief period. Now were back to nothing measurable. Dr. Long is also concerned that Charlotte is not feeding herself. Me, too. Mostly for my own and Philippe’s sanity.

So, our new feeding strategy is to a) offer her only solid food (in the form of super-caloric purées) for 5 minutes before we even bring the Pediasure to the table, and b) encourage her to hold her sippy bottle or cup and her spoon. Also, I’m going to try the more robust recipes (like pizza, refried beans, etc) to see if the stronger flavors are more appealing. Apparently that works with some reflux kids.

Dr. Long also mentioned the possibility of doing a residential program or what I call “Feeding Boot Camp.” Charlotte and I would be resident at CHOW for 2 weeks. During the first week, a behavioral psychologist would feed all meals and I would watch from behind a one-way window. Then we’d transition to me feeding Charlotte. Dr. Long said that in kids like Charlotte—who have no anatomical or medical reason for not feeding themselves—the success rate is as high as 90%. She didn’t mention the reflux at all, though I think we all agree that it is real. The wait list is about a year for the residential program. We’re adding Charlotte’s name and hoping we won’t go, but it’s a real possibility.

Amy agreed with my concerns about the disparity between Charlotte’s receptive speech and her expressive speech. Quick definition: Receptive refers to what she understands; expressive to what she articulates in words.

Charlotte’s receptive speech measures at about 20-21 months. She can follow 2-part commands and she understands everything you say to her. She’s already laughing at being reprimanded (lucky me). However, she’s measuring 12 months in expressive speech. Beyond babbling, she makes no deliberate words. We think she means “cat” when she says “ba” because she looks right at Miles every time. Same thing for “pa pa” and Phil. But, that’s not quite where we’d like her to be. Two speech therapists have told us that keeping a bilingual home is not delaying her speech (Apparently this is an old wives tale. Makes sense to me; something we parents can tell ourselves so we don’t worry!)

Now, speech acquisition is a funny thing. Some 10 month old have 10 words but then don’t speak in even simple sentences for another 10 months. Some kids don’t speak until they can form sentences. It’s like reading—if there is no reason why they can’t learn it, they will. But the range of time it takes is huge. So, we know she will and soon. She babbles up a storm; full babbles sentences with intonation and everything. New sounds every day. And we’re so ready to hear what she has to say. The plan—to drop feeding therapy for now and have Laura come twice a week to concentrate on speech. If we can work out the schedule…..

Dr. Blank didn’t have any real commentary after her check up. Charlotte’s reflux is as controlled as we can get it, I suppose. She’s growing well (10 grams/day per their calculations). She’ on the growth chart! 25th percentile! All that is, medically speaking, good news. She concurred with the team’s other thoughts.

That’s it from Milwaukee. We go back in 2-3 months.

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