April 2014

Allie had her pediatric ophthalmology appointment today, as a follow-up to her diverging eye issue. Ever since out-of-network vision therapy failed as a viable option (Allie being too young to meaningfully participate) and Allie’s first follow-up with her pediatric ophthalmologist showed her not getting better, we had all been faithfully following the patching prescription. 6 days a week, an eye is patched for 2 hours, one eye on one day, the other eye on the next day, and so on. Allie is an amazingly good sport about it. She has occasional special requests, such as “I want Daisy Duck!”, which we try to oblige.

But generally, she picks out a patch that matches what she’s wearing for the day from 2 boxes of adorable pre-printed colorful designs, she closes her eyes as the patch is applied, and she goes about her day. 2 hours later, the patch is removed, and she goes about her day again. She went thru a brief bout in which she refused to have the patch removed because she said it would hurt. (The adhesive on the Master-Aid brand designer patches was much stronger than on the flesh-toned Nexcare patches.) We resolved that problem by sticking the fancy patch on our forearm lightly two times before affixing it to her eye, to weaken the glue a bit. Now she can remove the patch herself when time’s up.
Her eyes seem to both focus well, and the turnout is much less common, only when she’s tired. She even stopped turning out when she was spaced out and daydreaming. And it was easier to bring her eyes back to center. I was hoping that she’d be out of her patches by the time the next follow-up happened, but she was still having occasional turn-outs, so I knew she’d likely have to wear the patch just a bit longer. Another 2 months, maybe. I anticipated the pediatric ophthalmologist giving me the good news of her progress.
Instead, I got the shock of my life. He was really happy, it seemed, because she hasn’t gotten worse. What? You mean she’s gotten so much BETTER, right? No, he said the degree outturn measured the same, and there’s no cure and improvement at a “30” outturn is rare. If she had “10” outturn (degrees, maybe?), there may be the possibility for a return back to normal, but not “30.” No, this patching thing is just to prevent her from getting worse until she could get corrective eye surgery. WHAT?! Yes. And if she got worse in the meantime, we’d switch to over-under glasses to force her eyes to work harder to see, and if that doesn’t help, then early surgery. WHAT?! What’s meant by “early?!” Kids’ eyes, muscle growth, control and coordination are still changing and developing until about age 8, so to do any surgery before that would be akin to putting braces on a 6 year-old. So we’re looking at closer to 7, 8 for surgery.
Eff, eff, eff. Wait. Does that mean we’re going to keep PATCHING DAILY for the NEXT 5-6 YEARS?!
Apparently so. Unless she gets worse, in which case, glasses is Plan B, earlier surgery is Plan C.
Eff. I am going to re-enroll her in vision therapy when she’s a little older as a last-ditch effort to avoid cutting her eyeball muscles.
My poor baby.

This Easter, Allie had 2 egg hunts…the one in the backyard with just us and my parents, like last year, followed by her cracking and eating an egg or two for a snack, and one in a park with a bunch of the moms/nannies/kids that Jayne became friends with, cuz the kids apparently all hang out in our neighborhood park.
She also got to meet and get her photos with the Easter Bunny.

Where does the time go?