Several weeks ago we traveled to UVa to meet with Emelyn’s neurologist who released us from routine follow-up visits with her. While seizures are a possibility, both because Emelyn has an underdeveloped hippocampus (revealed via a brain MRI) and because of her DDX3X diagnosis, we’ve been fortunate so far to have avoided them. Should we have any neurological concerns, including seizures, Dr. Heinan is only a phone call away.
During the appointment, Dr. Heinan remarked on Emelyn’s strength
which led into a great conversation about how hard it is to explain low muscle
tone. I told her, “I think people think Emelyn is weak because she has low
muscle tone, but she’s actually very strong.” If you’ve ever been unfortunate
enough to catch one her involuntary fists in the face you know what I’m referring
to – that little hand has some real muscle behind it. Likely from two plus years of physical therapy.
Dr. Heinan shared a great analogy I couldn't help but share here. She compared low muscle tone to a weeping willow tree. While weeping willow
trees appear to be weepy and floppy, they’re very strong trees. They grow tall
with wild, flowing branches. And those branches can support the weight of a person
swinging from them. However, unlike an oak tree, which looks tall, tidy, and
strong, you can’t stand a weeping willow tree branch up on end. While strong,
it’s just not made to easily support itself like an oak tree.
I loved this analogy for so many reasons, but mostly because
who doesn’t love a weeping willow tree. They’re beautiful and unique – just like
Emelyn.
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