Her doctor took her in the hall while I reviewed things with the nurse and had her run and skip, then brought her back in the room and asked her a bunch of questions. She told me she was thrilled with her progress, that she seems much more focused and calm, and I definitely agree. We talked about her face a bit, too- at this point, the working diagnosis is something auto-immune. Her MRI is too normal for any kind of demyelinating disease, and her symptoms are too inconsistent to be due to a tumor (which was also ruled out by the MRI, but of course there's the worry we missed something, especially when your mom works in neurosurgery, and especially when it literally does not get any worse than the type of tumor that would cause a facial weakness and I can't even get into it lalalallaa let's talk about something else now). There's one specific diagnosis we suspect, very rare, but there are no diagnostic tests to definitively tell us if that's it, and given the nature of her symptoms, the neurologist also reminded me that it may always just be a nebulous, "we don't know what this is but we know what it's not and it is good that it's not that"-type diagnosis. I already knew that, and even though I don't always like it, it is much, much better than some of the alternatives, so I'll take it (as if I have a choice. but you know what I mean.) As far as meds are concerned, if she gains more than five pounds before July, we'll have to increase her dose, regardless of whether or not she's having seizures. If we can make it until July without gaining that much weight, and without any seizures, then we can let her outgrow her current dose and see how she does. We can talk about weaning meds in 2014, which is the next time the neurologist wants to see her, as long as she keeps doing as well as she's been doing. All good news!
But my favorite part of the appointment came when her neurologist was talking to her, and turned to me and said, in her calm, measured voice, "I think Gracie is going to be a neurologist when she grows up. She's very thoughtful. And...well. It's nice to be a neurosurgeon (she knows I work in neurosurgery), but. Well. Gracie has the, ah, motor planning skills of a neurologist." At which point I could not help laughing, because ZOMG. The child could trip over a strand of hair. I did tell her, I sometimes have trouble figuring out whether it's just Gracie being like her poor, unfortunate mother, or if it's something I should worry about, and she said, "You know, when I was in high school, I had to take some stupid test, and afterwards, they told me I had the motor planning skills of a mental vegetable. Which I STILL THINK was an exaggeration! But regardless, I don't think it matters." Heh. Excellent point.
|And anyway, she can crank the ball off the tee, all the way to the back of the yard. I think she's all good.|