Speech appointment

We had an appointment today with the speech pathologist. (Yes, that one.) It went far better than I expected. In fact, we now have solid evidence that not only is Namine speaking better with the palatal prosthetic in, her speech is improved when she isn’t wearing it.

First day back since the Fontan

It wasn’t Namine’s first time back to therapy since her most recent heart surgery, of course. But it was her first time walking. Not just doing more at home, climbing on things – although no one was more thrilled than her when she got the green light to climb again – but really, truly working hard. And she did amazingly well.

Drawing what she knows

Jessica showed me something interesting last night. Namine had drawn her hand on the chalkboard. After doing so, she filled in some details, including the crease of skin between the palm and fingers, and the blood in her veins. I find this fascinating.


Role model: an essay

My sister wrote this essay, republished here with her permission. My role model isn’t someone famous or someone with many years on me. Truth be told, the person I look up to most is someone less than three feet tall. My niece, Namine, is five years old, but she has gone through more life than some 50-year-olds. She’s had three heart surgeries, a cleft palate surgery, jaw distractors, and two foot surgeries, and those are just the big surgeries. Overall, outpatient procedures included, she’s had over two dozen surgeries. And even through all that, she is the happiest little girl I have ever met. She has more cause than most to be cranky all the time, and she has never […]