Musings of a Marfan Mom

We were really lucky to nab a last minute opening for a feeding clinic evaluation last week! We’d been waiting since September for a spot for J, only to find out a few weeks ago that we’d never been put on the waiting list. Our appointment was scheduled for the end of March and we just prayed we’d get a cancellation opening sooner. I was anxious the night before and I have no idea why, but the evaluation went really well!

First we met with a very sweet pediatrician, who took a brief history of J. Then I filled out some additional paperwork why she got the rest of the team ready. J and I were escorted to a conference room with a psychologist, an MA in psych, the pediatrician, a nutritionist, and an OT. J got to play with cars and my phone while we talked for at least an hour, if not longer.

First they asked about our previous feeding clinic experience. It consisted of one visit, where I was told to try hiding food (in particular, to hide hot dog pieces in applesauce). I dismissed this advice as complete garbage because I felt like it would violate J’s trust (plus who eats hot dogs in applesauce?!), and I was glad to see that everyone on this team agreed with me. Then we discussed all of J’s milestones, his Marfan diagnosis, other health issues (like the chronic diarrhea, dairy allergy, and reflux), what we’ve tried already in terms of eating, and our goals.

The team was SO kind. That was what stuck out to me above all else, which might seem weird, but it is easier to have trust in a medical professional who is kind. They also trusted me to have the best information about my son. Of course they were knowledgeable, but without the first two aspects present I am much less comfortable working with a given medical professional.

After all the talking, J got down to eating! Unlike at our previous food clinic experience, we weren’t expected to bring the food for the evaluation, though I did just in case. Surprisingly, he gave just about all the foods a go: chicken fingers, tater tots, green beans, granola bar, and pureed peaches. I was kind of hoping that he would show his mealtime behaviors so they could get an accurate eval, but the most he did was chew up green beans and then scrape them off his tongue a couple of times, and refuse to even touch the broccoli. But, he at least tasted everything else. The team said this sudden great eating was normal (they called it “the magic of the room”), assured me they believed me about the difficulties we’re seeing, and said they’d surely see J’s issues themselves over the coming weeks. And, just in case they don’t, I’ve videotaped some meals at home.

I left the evaluation feeling really hopeful.

Since then we’ve had our first therapeutic appointment, which I’ll write about soon!