I had to take DD to children's the other day to get her feeding tube changed out. She has a J tube so they have to do it in radiology. I was sitting there waiting and her nurse was suctioning her and this lady sitting across from us said, "They've been feeding her formula haven't they?"
I was like "whaaaat?" What the hell does formula have to do with my child's medical condition? I'm not loving formula...I'm a total bf'ing supporter, and I do recognize there are risks to formula feeding. But uh...formula doesn't cause CP, feeding disorders, dysphagia, ect.
I explained that DD wasn't on ANYTHING because her gut stopped working and we were changing out her tube as a last resort and then she goes on to tell me that her DD has CP and she's 22 and blah, blah, blah. Ok so wouldn't she recognize that my DD had similar issues and formula isn't the cause? Or maybe she just thought milk=mucous production, but not all formula has milk in it.
Then she starts telling me that I should be glad she still so small and not to look forward to when she's bigger because they are so hard to move around and I should be doing this, this, and this in the future to keep her healthy.
HELLO!? Do you not see my child in respiratory distress and a has non-functioning gut!? I'm just trying to get her through the day alive...I don't think I have to worry about those things! I know there are different severities of CP and maybe she didn't realize my DD is quite severe and her predicted lifespan is not very long...still I TOLD her that her gut stopped functioning...you'd think she'd get the hint that the only plans I'm worried about are whether or not to put in a line or let her starve to death (neither a long-term option, but whatever).
Probably a rant best saved for the SN board, but I figured it wouldn't hurt to put it here. Lesson: Even if you think you know about someone's condition...you probably don't. Don't assume and make comments. I've got a child possibly going to hospice in the next few weeks. Her formula has nothing to do with it.
