Looking for Zebras

On more than one episode of Grey’s Anatomy, they have mentioned hearing hoof beats and not expecting Zebras.  You should expect horses.  Since TV is obviously just like real life, I assume this is something medical people actually say :).  So what happens when all the horses have run away and you still hear hoof beats?

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This is Lorelei.  Lorelei is a phenomenally strong, pretty, smart, little lady.  Since the day she was born, she’s been skittish, tires quickly, and is uncomfortable in her movement.  We first noticed she was “delayed” in her motor skills when she was very small, but it became pretty obvious when she was 12 months and did not crawl, could not sit alone, and wouldn’t even pretend to put her legs down and bear weight.  I’m not the wait and see kind of mom.  I’m an attack it aggressively and prove it wrong kind of mom.  So Lorelei and I started trying to prove the signs wrong.  She went into early childhood care through the Macomb Infant Preschool Program for gross motor delay, and some speech and sensory issues as well.

She has always done well when you compare her to other kids in the same boat.  But Lorelei comes with a tiny mirror of normal milestone development, her twin brother, Elliott.  When Lorelei was first starting to do the rock motion to crawl, Elliott was scaling furniture and practicing death-defying stunts walking across the windowsill.  When she struggled to pick up a fork, he was building amazing block towers with a strong steady hand.  I know you’re not supposed to compare children (they’re all different after all) but the divide was shocking and growing.

Lorelei was generously diagnosed with Cerebral Palsy by her PM&R Doctor at the Michigan Institute of Neurological Disorders, but even he admits that this child does not have CP.  But it did allow us access to insurances and services we wouldn’t have received otherwise.  He’s a good egg.  She had her first MRI at 18 months.  Since I fancy myself an investigative physician, I asked for a disc and I looked at every darn frame.  I had no idea what I was looking for, but my heart stopped when I found this angel.

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Apparently the angel is just a weird Rorschach test and nothing concerning.  But strangely it made me feel better or calm or something.  I can’t tell if she’s like “I’ve got this” or “You’re looking in the wrong place” or “Don’t worry, it’s ok”.  Regardless, I find comfort in the fact that Lorelei has angels in her brain.  Let’s just ignore the creepy demon face at C1 ok?

I am looking for horses.  But she defies every horse of every color.  Part of me wants to just leave her be and let her be and watch her become.  But another very stubborn part of me wants an answer…and I want it now.  Is this just who she is and she’ll never be a star athlete?  That’s fine.  Is she going to be ok until she’s not and start regressing?  Her progress right now, is forward, but slow.  Cognitively she is perfect and so smart!  So why does she have muscle weakness?  Why is she so tired?  Why is she so clumsy?  Why do her eyes cross?  Why is her Babinski reflex still there?  (Graphic below because everyone loves random medical knowledge right?)

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So I’ve become a zebra researcher.  I look for zebras because none of the horses make sense.

Since we moved here to the country and were let down so badly by Elliott’s doctors, we sort of took a break.  I pulled off her tall AFO braces (saw that her calf muscles were in atrophy) and let her run barefoot through the grass.  We put up a swing set with a special swing for days that she can’t manage sitting on a regular swing and we stopped helping her as much.  We MADE her do hard things.  She can do hard things.  She’s mastered stairs. She’s even started jumping.  She’s doing ballet.  She climbs, she chases bugs and helps catch chickens.  She’s doing tremendously well.  But I can still hear the hoof beats.

We went back to PM&R today and he hears them too.  He has new ideas, so he armed me with a new battery of tests with a new focus.  Headed back down the rabbit hole chasing this elusive hoofed creature.  See you on the other side.

zebra

-Mary

One thought on “Looking for Zebras”

  1. Whatever she is …or isn’t….she is wonderfully & beautifully made by her Heavenly Father. But as a mom – I understand just wanting to know! Hugs & Prayers!

    Liked by 1 person

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