Ellie’s Eyes

Watching The Never Ending Story.

Watching The Never Ending Story.

This is what some people call Ellie’s “cute” look.  What they don’t realize is that this is the only way for Ellie to see properly.  The muscles in her eyes don’t line up the right way, so she has to tilt her head and look out of the corner of her eyes to see things.  Heaven forbid the poor child has to look at something on the other side of her.  Her eyes keep trying to fight her, to pull back to this position.  So pretty much everything she sees is blurry, because her eyes have to keep moving to try and focus.  (If you care, these conditions are called strabismus and nystagmus.)  So no, this look is NOT “cute” to me.  Not at all.

Tomorrow, it will change.

Tomorrow Ellie is going under the knife yet again.  The eye doctors from CHOP will fix two of the four muscles behind her eyes (one behind each).  This should allow her eyes to focus straight ahead, like they are meant to do.  No more head tilting, just so see the TV.  No more lack of depth perception.  No more frustration at not being able to stab her food with a fork.  No more “cute” look.  She may still have some of the eye wiggles, but not nearly so bad.  And, of course, she will still be nearsighted.  They don’t do Lasik surgery on toddlers.  Yes, I asked.

I’m usually pretty calm about Ellie’s surgeries.  This is her fifth one, after all.  The first one was major heart surgery when she was only three months old.  Everything after that kind of seemed like small potatoes.  Her G-tube (feeding tube) placement and the closure of her G-tube sight when she didn’t need it any more were a walk in the park.  Surgery?  Psht.  Whatever.  I’ll be over in the waiting room, taking a nap.  Wake me when she’s done.

All of that changed in December.  Two days after Christmas, Ellie had her tonsils and adenoids removed.  (Kid had some wicked sleep apnea.)  When they gave her the sleepy gas, her heart rate plummeted.  Chest compressions and a shot of epinephrine were required to get it beating again.  Everything else went smoothly.  If you don’t count the fact that she refused to eat or drink afterward, so she ended up in the hospital for over a week.

You know what kills your nonchalance towards surgery?  Having your kid’s heart stop on the table.

So I’m a bit more stressed out about her eye surgery tomorrow.  The doctors at CHOP have a plan to prevent her heart rate from dropping this time, but I’m still nervous.  I know that it’s a common thing in kids with Down syndrome.  Happens all the time.  Still, not really making me feel any better.  Nope.  Not at all.

Ellie, of course, has no idea what is going to happen tomorrow.  I’m hoping to scoop her out of bed and into her car seat at 4:30 in the morning without her even waking up.  Hopefully we’ll be in Philly before she knows we are even going to the doctor.  But she knows that Momma and Mommy are on edge.  She keeps coming up to me and patting my arm, with this sweet little face that clearly says, “It’s ok.  Whatever it is, it’s ok.  I love you.”

Which is just what I’ll be telling her tomorrow, when it’s all over.


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