I just did the first weigh in a month. At our last paeds appointment she said not to worry about his weight, he’s tracking close enough to the 20% line and that’s okay. I basically decided that if his medical team weren’t worried about his weight, I shouldn’t be.
My fear is based on the dietician making harsh calls about the blended diet based on his weight gain, which to be honest, shouldn’t be. As his parent if there is no concern from his paed and CCN, then I definitely shouldn’t be letting the dietician freak me out with some half baked comments (and let’s be honest, she can inform us, but as parents we decide what he eats).
I feel like in the world of high-medicalised special needs there can sometimes be a power imbalance between professional and parent. The professional doesn’t always acknowledge us as experts in our children in our own right and often there is the expectation that medical professionals know best. I learnt early on that no one other than the metabolic consultant anything about NKH, and often doesn’t alter their typical plan to include it. No one knows more than I do about my son, and no one is looking at the whole picture but me.
There is the other times though, when the power shifts the other way. I know how to advocate and have no fear entering conflict to achieve what I think is the best outcome for my son. Mostly, I don’t need to Mama Bear anything. I’ve learnt that being brash and loud is not always the best way to get results and sometimes it is. And then sometimes you can ignore an email for three months and it’s no big deal.
So I stopped weighing Mikaere for a month, and what do you know? Despite all the vomits there’s a modest increase. Good job us!
