360/365

IMG_1071.JPGA portrait of my daughter every day in 2014

Every so often I let my brain worry about what is going on inside of that body of hers. Today is one of those days. Weight gain and eating habits are one of the first things they look for in the world of cardiac kids. Today she ate: 2 bites of a muffin, 3 bites of a cinnamon roll, 1 chocolate candy, half of a yogurt smoothie, 3 deep fried cheese curds and 2 clementines. Some days it’s a struggle to get food in to her. We went to her favorite restaurant for dinner and she didn’t touch her food. I get that toddlers are at times extremely picky. I know that it’s totally normal. But that’s the thing, her hearts not totally normal. And eating, and weight gain are a big deal. Up until recently she’s rocked both. At her two year check up she dropped off of her growth chart. Significantly. I’m always one who lives by “watch the baby not the scale” and growth charts aren’t the be all end all of everything baby. But she’s lost her baby rolls, and I can’t help but worry. Surgery isn’t a maybe for her, it’s a someday. And most days I do ok with that. But sometimes it scares the absolutely crap out of me. It’s this delicate balance, making sure the surgery is soon enough that she doesn’t suffer any complications from waiting, but waiting long enough that she doesn’t end up with multiple surgeries over and over again. It’s enough to make my head spin.

It was a balmy 46 degrees here in Wisconsin today so we went to the park, and she was ecstatic.

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