Ok, so after my impression of Homer Simpson’s “angry dad” last week I was able to chill out and get back to the positive psychology approach to getting kids to eat.
This week I practiced No. 8 Agreeing together what the rules are going to be. The heart of this is control. We gave her space and on Monday she asked if we could barbecue. It’s winter in Amsterdam and it was about 10C so of course we said yes. Hubs bought some meat (ok, this is not in line with “rule 1” but we didn’t have meat for a BBQ in the house. It’s winter!). The kids went outside with Hubs to make a fire and cook. We ate inside.
This is what she ate:
Butterfly lamb chop
Chicken drumstick (she got through half a drumstick)
Sauces: piri piri, mayo and ketchup. Lots of it. (no photos, I’m not advertising here).
So how is it that last week eating was a problem and on Monday F had a feast?
Was she just being fussy? No.
Bartters is a rare illness and there is limited understanding of what it is actually like to live with it. Over the years I have talked to adults with it or with Gitlemans and I have come to understand a few things.
Your electrolytes go out of whack at any given moment: your potassium levels can drop when you get stressed, when you are active, when you play a lot, when you get hot … basically, when you do anything, your levels can drop. When this happens, you are dehydrated. You feel nauseous and don’t want to eat.
Everything you do uses potassium. It makes your muscles work. When you don’t have enough, your muscles don’t work as well. So sometimes even swallowing is difficult for F. There was a long time (more than 12 months) where she could chew the food but couldn’t swallow it. So you might want to eat but you can’t.
All those meds you take make you feel like crap, so you don’t want to eat.
Everyday there can be a number of reasons why you don’t want to eat or can’t. That’s why after all these years we still rely on medical nutrition (feeding tube people have you tried Peptisorb by Nutricia? It’s great. Here I will advertise. This dramatically improved quality of life for F and for us).
So Monday was a beautiful day. Her enjoyment of the juicy lamb was clear (it’s been months since she ate red meat) and she chatted all the way through about how delicious everything was.
You can’t imagine my joy at hearing her groan “ohh I’m full”.
I’m just going to savour this memory and stop right here.