Takin’ care of strabismus

Gah! I can’t tell you how long I’ve been dying to use the above title for a blog post about Stella’s vision. Eons. For those of you who don’t know, “strabismus” (defined as “abnormal alignment of one or both eyes”) sounds a lot like “business” with a funny extra syllable in front. So there you go. Was going to save that tidbit up for my next big update, but it just couldn’t wait. I’m sure it’s been done before, because come on, it’s incredible, but I did technically think that up on my own without seeing it elsewhere. I refuse to google the phrase, so as to preserve the mine-ness. I’ve been copywriting for over a decade now in various capacities, yet somehow a good or perfectly goofy headline still makes my heart flutter. Yes, I just wrote a long paragraph about the headline of this post. And I wonder why readers aren’t flocking here en masse.

Oh right, I had a minor point. See the “Eyes” link above? Yeah, so I added a new vision-centric page to this blog so that interested people can find all the write-ups about Stella’s exotic-sounding visual conditions: amblyopia, anisometropia, accommodative esotropia, hyperopia, adorablyopia. Okay I made that last one up. And there may be others that I’ve forgotten and some that I’ve misspelled. But you get the picture. There’s a lot going on in Stella’s super cute eyeballs and we’re working really hard and I’ll be damned if no one else benefits from our saga. It’s like Star Wars, wherein amblyopia is the Death Star. Come to think of it, Darth Vader would make a kick-ass vision therapist. Tough-minded, thinks outside the box, and controls people with his mind? You’re hired!

Coming soon: I have some really exciting news to share from Stella’s recent vision therapy adventures. Like, crazy stuff that you might read about in science journals and marvel at the amazingness and plasticity of the human brain and how the hell did doctors and scientists figure out how to do all this stuff in the first place? This is boring to most people, probably. I’m a blogging failure in the general sense, but clearly I don’t care. I don’t need to reach a lot of people, though if this really is anything like Star Wars, I will. I just need to reach a few people in similar shoes, to help them a little bit, just because I can. If Stella’s story can benefit other kids, well, that’s what it’s all about! Sweet, sweet meaning.

To me and parents of kids whose brains are playing favorites with their eyes, this crap is more fascinating than you can ever imagine (I hope). Anyway, in addition to patching and whatnot, we’ve been doing more “advanced” therapeutic exercises. At the last appointment, it felt like we were really onto something. No, it’s not like Stella’s eyes are cured of any issues, but words like “dramatic” were tossed around. The impact of therapy could be much wider than I’d realized. I promise to write it up soon, because it’s really amazing and fascinating and my hopes rocketed up a notch or two, and my head will explode if I don’t write it all out.

You read this far? Wow. Thank you! To prove it, please leave a comment saying only, “Luke, I am your vision therapist.”

Seeing

Stella has accommodative esotropia due to farsightedness (hyperopia), and amblyopia, which is probably contributed to by anisometropia (unequal refractive power in her eyes (UPDATE) that lasted until age 13; reading was much easier after that!). As with our tube weaning story, I hope someone somewhere can benefit from our ongoing journey in the realm of vision. To dive right in, use the links below. Read on for all the background–and be sure to pop up some popcorn.

Click here to read posts about Stella’s eyes on this blog.

Click here to read my posts at a popular site for parents of kids with glasses, “For Little Eyes“.

Stella donned her first pair of glasses at the ripe old age of 20 months. The sequence of events leading to those adorable frames was sparked by an emergency room visit entailing a head CT scan, as Stella’s eyes began crossing severely one afternoon, a problem that seemed to come out of nowhere. At first it was perceived as a scary reaction to a possible bump to the head (hence the CT), at the end of a week of appetite-crunching, energy-zapping, snot-ridden illness. We later realized that her eyes had not been properly aligned since birth, though it was deemed intermittent. I can now look back at baby pictures and see how the little white dots of light are in different places and obsess endlessly about how her eyes weren’t straight–fun! (By the way, that whole detecting strabismus through quick photo analysis thing? Not a great party trick for some reason.) I now know that it’s not uncommon for an illness to reveal or trigger eye crossing or other forms of strabismus–the resulting fatigue broke down Stella’s ability to focus through her farsightedness, and her ability to accommodate that slight mis-alignment. Her eyeballs and associated muscles were simply exhausted by that bug, having endured extra strain all along. I honestly don’t know how long it would’ve taken for us to uncover her visual issues otherwise. She could see details near and far! She’s loved books for as long as I can remember! So in a way, I’m really quite thankful for that hideous cold.

It took a month or maybe closer to two before she really accepted the glasses, and patience is not exactly my strong suit so those were trying days. Though in hindsight I realize that Stella did amazingly well with the transition to a bespectacled life. At our very next check-up with the ophthalmologist, following the initial appointment during which glasses were prescribed, we were informed that Stella’s left eye was being tuned out by her brain, and that she needed to begin patching. It was like being punched in the gut, as I thought we’d addressed her vision issues and were finally settling into a new “normal.”

After reading Fixing My Gaze, I became extremely interested in vision therapy (okay, I was kind of obsessed) as a complement to the three hours of patching Stella was doing each day in order to treat her amblyopia. After a bit of asking around and, of course, some major googling, I found a relatively nearby developmental ophthalmologist with a practice centered on vision therapy for kids. This doctor was our third opinion. The first was an ophthalmologist who never mentioned vision therapy, and the second was a developmental ophthalmologist who said Stella was too young for vision therapy.

Stella attended her first session of vision therapy at just 24 months of age and, as of this writing, has been going in weekly for almost five months. We do 20 minutes of vision therapy at home, five days a week, as well. We are seeing wonderful improvement. Her weaker eye once had acuity of around 20/80, and now it’s up to 20/30. And her eyes don’t cross nearly as easily during examination! Her fine motor skills (and patience for fine-motor tasks) have taken off. All told, this stint of vision therapy will span nine to twelve months, until her vision reaches an age-appropriate level, or until her improvement stops or plateaus.

I write about Stella’s vision here and at Little Four Eyes, a mindblowingly helpful resource for parents of little ones who wear glasses and/or face visual challenges of all sorts. (Go there immediately if you haven’t already! Yes–gasp!–it’s so good that I’m ordering you to leave my site in the dust!)

Click here to read posts about Stella’s eyes as featured on this blog.

Click here to read my posts at Little Four Eyes.

Thanks for reading!

Rough patch

This is a rather tedious post. But I can’t help it. Understanding Stella’s visual issues involves a level detail that hurts my head. I have to give each individual brain cell a pep talk before attempting to absorb anything.

Tomorrow, we will attend Stella’s first session of vision therapy. I am nervous, excited and hopeful. At the same time, I’m confused and scared, because I suspect Stella’s eyes are getting worse. She’s been taking off her glasses and rubbing her eyes a lot more lately. It’s harder and harder to get her to wear the patch (Magic Tape over her glasses’ right lens, so as to make her weaker left eye work harder and get stronger). I think her eyes crossed today while I was changing her diaper–and her glasses were on. Not good. I wonder if her prescription needs to go up. A very optimistic part of me that rarely sees the light of day (for good reason, probably) wonders if the prescription might need to go down, but that makes little to no sense. I wonder if patching is somehow making things worse, namely by weakening her strong eye. Something is OFF right now. I can just tell. I don’t feel so sure that we’re on the right track anymore. I thought I had this pretty much figured out, but not anymore. I’m terrible at dealing with uncertainty. But nothing is ever certain, is it? Sucks to be me.

The specifics about Stella’s vision issues are still annoyingly hazy to me, which I can barely stand. I’ve been trying to read studies but have a hard time making sense of them nevermind applying them to Stella’s unique visual situation (which again, I don’t fully understand, so how to know what research applies to her?). I’ve emailed her doctor, only to get brief, confusing replies that include attempts at reassurance without any real clarity. It’s frustrating as hell. There are conflicts between what different doctors have told us and I’ve never been able to fully reconcile it all. I have so many nagging questions–some are specific with answers that exist but are currently just out of reach, and some are broad and probably unanswerable:

If her good eye is being covered for three hours a day, could its vision be suffering? She’s been rubbing it.

If her weak eye is improving due to patching, shouldn’t her glasses prescription adjust sooner rather than months later at her foll0w-up appointment?

Since she is not wearing her glasses or patch as well and seems to be having more trouble with her eyes, do we need to schedule another exam?

How do her conditions of farsightedness, strabismus (accommodative esotropia in her case) and anisometropia (unequal refractive power) play off each other or cause each other? I want to understand the relationship between all these terms, and why her brain is tuning out one eye. I don’t quite get it.

Does Stella have full-on ambylopia or is she just headed toward it?

Why, after she started wearing specs, did Stella’s brain start to favor her strong eye if the glasses supposedly accounted for and corrected her vision in both eyes, with extra correction for the weak eye? Shouldn’t glasses have prevented this?

Why didn’t Seattle Children’s Hospital even mention vision therapy?

How did the ophthalmologist at Children’s Hospital know that her weaker eye was “starting to be tuned out by her brain”? All they had Stella do, in order to determine this, was look at giant gray cards with teeny, tiny holes in them. They did her strong eye first, several times with several cards, then her weak eye. What if by the end of this boring exercise, she just stopped paying attention, being not quite two years old at that time? They said there was a “one card difference” between her eyes. What on earth does this actually mean?

Does Stella have 3D vision or not (one office seemed to think so, another didn’t)?

If much of binocular vision is established by age two, though it can be corrected later, shouldn’t she have pretty good vision since her issues didn’t start until around 18 months and the crossing has been very rare (“intermittent”)?

Or, are her eyes crossing slightly all the time and I just don’t notice it? Current doctor says yes, her eyes probably are crossing and I just don’t notice. This made me sad and almost drove me insane. I didn’t think this was true, based on what the doctor at Seattle Children’s told me.

Relatedly, why the F is she wearing glasses if they’re not preventing crossing and her weak eye is getting worse anyway?

What exactly will vision therapy fix?

Are my hopes too high (for vision therapy)? They are very, very high. I can’t help it. (For those that have been following Stella’s journey for a while now: Vision therapy is the new Graz.)

Are my worries too big (again)? They are growing all the time.

It just never ends, does it?

Broken glasses, stained clothes, and other infuriating non-issues.

The other day during breakfast, I asked Stella to name her favorite animal. She sat there for a minute, with her brow furrowed and finger perched on her lips, obviously in deep thought. Stella then perked up and exclaimed, “MEERKATS!” We saw them at The Woodland Park Zoo a couple weeks ago. Honestly, I expected them to look more like rodents, but they were WAY more adorable than that. I remember Stella smiling from ear to ear as she watched the meerkats scurry around in their faux-desert environment. Melted my freezer-burned heart. Anyway, Cody and I were so impressed with her question-answering that we followed up with another query: “Stella, what’s your favorite food?” She immediately replied, “Animals!” Come to think of it, the girl does enjoy bacon and chicken.

It’s amazing to me how someone so cute, small and thoughtful can be so destructive. See, Stella’s first pair of glasses lasted only 18 days. Last night, while riding in the car, she just about tore one of the temples clean off. It’s still attached, but dangling and wonky. Kind of like my sanity, except with that, there’s no warranty.

Know what else is messed up? There are oil stains on every piece of clothing that I own. Pre-treating with dishwashing liquid helps a lot, but it’s hard to get them all out, because oil stains are invisible until you put the garment on to wear for the day. Then they leap from their hiding places, get all up in your face, and yell, “Surprise, chump!” And you’re not thrilled. Upon reflection, the amount of rage these stains have prompted from me is embarrassing. I have thrown tunics across rooms, and yelled angrily about how I have nothing to wear. And I’m 33 years old.

Perhaps my instability is linked to the fact that Stella’s been eating a lot less lately. Yep, when Stella’s appetite wanes to this degree, it still bothers me, even though I know better. When I said my sanity was dangling, I meant it. During the past week, more food has wound up on my clothes than in her mouth. She often refuses to sit in her chair and will only come to the table if she gets to sit in my lap. I’ve had to fight to remain calm–especially when she gets my hopes up by grabbing a fistful of tomato-y, olive-oil laden pasta, only to casually dump it back on her plate and grab me by the front of my shirt for leverage as she repositions herself in order to get down from the table, after eating just about nothing. Maddening. She’s just too busy thinking about meerkats to eat, and who has time for napkins when mom’s new t-shirt is at the ready?

But I’m not all hopeless or anything. Stella’s got a back-up pair of glasses (because I’m a genius). Even better–I haven’t seen Stella’s eyes cross since she got the glasses! Over the past couple weeks, I bought an entire new (summer) wardrobe for Stella and myself. But I’m no fool. At meal times I’m wearing that fun, striped apron I wisely bought a year ago and never used. Which reminds me, Stella happily ate a bit more at breakfast and lunch today–hooray!

Sorry, Cody and Stella. I’ve been a bit down lately. But it looks like we’ll survive. In the heat of a frustrated moment, I forget how good we are at that.

Adjusting

Our train, still rumbling through New Glassesville, jumped the track a couple days ago. Stella took an impressive spill in one of her signature, glorious full-sprint to flat-out moments. The temples got bent out of whack. I bent them back into approximate place. That marked the beginning of a new wave of resistance. I’d put the glasses on her head, and Stella would immediately and mercilessly tear them off. This went on for about two days. She’d only leave them on while completely distracted–like say, at the playground, on helicopter rides, or watching the fireworks I convinced the city to present nightly over our home. Not really, but the effort to entertain Stella (necessitated by the specs) had been waning when it seemed  she was taking to the glasses. And now I’m kicking things back up a few exhausting notches.

Clearly, it seemed, the glasses needed to be adjusted. But it was Memorial Day weekend, so we couldn’t go in. We had to tough it out, and I almost went insane because they’d be fine at first, and if she left them on for a couple minutes (an act of God) they’d wind up about a half inch off to the right. Finally, Tuesday, wondrous Tuesday, arrived. We went in that morning for the adjustment on her frames.

I found myself showing a distinct lack of trust in the very skilled optician. I just can’t help it. Because didn’t you know? The fate of not only Stella’s eyesight but THE WORLD rests in my hands. Apparently. if I’m not 100% on top of everything, this increasingly oily ball of life we call Earth is going to burst into flames (easier now, with the oil spill and all) and it’s all over.

Seriously. I spent a good five minutes explaining what had happened and what was off about the glasses. As if she didn’t know anything. She did initially ask, “What’s going on?” But I really took that ball and ran with it–just like Forest Gump. I just kept going, across the goal line, out of the stadium and across the nation, only I didn’t make friends along the way and inspire people to pursue greatness, I instilled new worries and pointed out everyone’s flaws.

So, probably because I kept insisting that the glasses were seriously “off” (she didn’t really see it) and not staying in place, she tightened them up a bit. Which created a whole new problem. They looked perfectly straight, but Stella’s refusal to wear the glasses reached new heights.  It got worse and worse and I got more panicky and angry with each passing hour. Then, driving home after running errands (which actually do a decent job of distracting Stella from her glasses), I looked back to see that Stella had removed her troublesome specs. Holding the temples in her white-knuckled fists, with an expression of sheer rage on her face, she stretched the glasses–temples and all–into one straight, flat line. They were no longer glasses. They became a bookmark. I was driving and there was nothing I could do about it except unleash a nervous, faux-calm, sometimes faux-perky, sometimes serious and admonishing, nonsensical string of, “No! Gentle! Glasses! Uh… uh… hey Stella! Look at the truck! No! Stella, gentle! Glasses! Gentle glasses!” Finally I just said, to myself because I never ever swear in front of Stella (usually sort of–I’m really trying!), “Ah screw it,” and she kept those glasses in that horrifying horizontal position until we got home a few minutes later.

Imagine my surprise when, not only did they spring back into place, but they seemed to fit better. She has been wearing them with much more acceptance today. What? Yes. Stella, in a fit of anger, managed to execute a perfect adjustment to her own glasses. And I didn’t even have to fill her in on what the several, nuanced issues were. Now she just needs to get a job at the optician’s office so we can pay for her stylish and amazingly resilient Parisian specs.

Baby got glasses.

I’m thrilled and proud to reveal Stella’s new look. Below you’ll find a selection of the bazillion photos I’ve taken since Friday morning, when we picked up Stella’s glasses. I love her beautiful frames, the TamTam by Lafont in Blue (color code 220), and Stella could not look more adorable in them. I’ve ordered a second pair with Trivex aspheric lenses to reduce the magnification of Stella’s eyes while providing her with a clearer view of the world (without sacrificing impact resistance), and to make sure she can still wear her glasses if one pair breaks or gets too bent out of shape to wear. Which already happened this morning. Ahem.

Really, though, Stella’s done fabulously. Her resistance is to be expected. Her vision is pretty great without them, so there’s no huge incentive for her to wear them. We know it will prevent her eyes from crossing and prevent vision problems associated with crossing, but she doesn’t. How could she? I’ve been worried about getting her to wear them–it’s tough.  I’m stressed when she rips them off and pretty much in general as we both adjust, but there have been many wonderful moments, too. On Friday, she wore them on the playground for a good while and had no trouble with balance or depth perception. (The optician said she might struggle with stairs or running on uneven surfaces. I’ve seen a little evidence of that, but it’s not too bad at this point.) Then she took them off on the way from the playground to the car, but once planted in her car seat she asked me to put them back on! On Saturday, she wore them for a glorious hour-and-a-half stretch, which included a car ride, even though kids with new glasses usually rip them off in the car, or whenever they get bored. On Sunday, she put two small pieces in a puzzle–she’s never really done that before, always seeming to have little to no patience with those sorts of precise tasks.

From what I understand of other parents’ accounts, shared on littlefoureyes.com, it’ll probably take two weeks for Stella to get used to wearing them without constantly removing them. Three days down, 11 to go!

You’re doing great, Stella. I’m very, very proud to be your mom. I don’t even mind wearing these CRAZY vanity frames, though I wish my specs were as cool as yours. You really could not be more beautiful.

Day 1

 

 

A new view of lunch.

A new view of lunch.

 

 

Newfound clarity, same ol' mac and cheese

Newfound clarity, same ol' mac and cheese

 

 

She even got to watch TV. Your Baby Can READ! DVDs are the ultimate distraction.

She even got to watch TV. Your Baby Can READ! DVDs are the ultimate distraction.

 

 

I wonder how her view of the playground has changed. In any case, she's still focused on fun. (Sorry. I'm hopeless.)

I wonder how her view of the playground has changed. In any case, she's still focused on fun. (Sorry. I'm hopeless.)

 

 

And the treats don't stop. Celebratory ice cream.

And the treats don't stop. Celebratory ice cream... at Molly Moon's, of course.

 

 

An impromptu, post-ice cream Sears-catalog-style photo shoot in front of the grocery store.

An impromptu, post-ice cream Sears-catalog-style photo shoot in front of the grocery store.

 

Day 2

 

 

New glasses distraction purchase #547: "Kat Kong"

New glasses distraction purchase #547: "Kat Kong"

 

 

HAHAHAHAHAHAHAHAHA!

HAHAHAHAHAHAHAHAHA!

 

Day 3

 

 

All she wants to do is read! Even on the bus!

All she wants to do is read! Even on the bus!

 

 

 

 

Sorry to interrupt your reading, Professor Sweetness.

Sorry to interrupt your reading, Professor Sweetness.

 

Strabismus confirmed. Glasses ordered.

Didn't you know? Cool characters wear glasses.

Didn't you know? Cool characters wear glasses. And have yogurt on their faces.

On Thursday afternoon, Stella’s eyes started rolling in again. All our questions evaporated. She has emerging accommodative esotropia. She really needs glasses. And that’s that.

So on Friday morning, we skipped Gymboree and went to find specs for Stella. She tried on three pairs.

Go ahead and judge me–I’ve watched “Say Yes to the Dress” once or twice. And our trip to the optical shop, in the Children’s Eye Care office in Kirkland, was a lot like that show. Except instead of catty commentary in the air and mimosas in our hands, there was extremely enthusiastic, high-pitched encouragement and a light-up spinning ball wand (which, somehow, is almost as intoxicating as OJ and bubbly).

The first and second pairs were total disappointments. Which in hindsight was perfect. Great for building suspense (and ratings). And then, as if scripted, we found the ones. They are French and fabulous. They are blue (also clear, white, purple and green) and if I described them in any detail, they would just sound crazy and over-the-top. But they are not. They work. Tim Gunn would most definitely approve–in fact, I bet he’d be super jealous. I am. As soon as the optician put those beauties on Stella’s face, she and I both knew. We just knew. We didn’t cry tears of joy, but we should have. Because audiences eat that up.

Her Parisian pair will be ready on Wednesday or Thursday of this week, barring any issues. You will want to wear glasses if you don’t. You may even view Stella as a budding fashion icon.* Stay tuned for the big reveal!

* All of this is assuming I’m able to get the glasses on her face for more than three seconds (the current record during try-ons).

Eye on Stella: Strabismus Watch 2010 Continues

They say that the eyes are the window to the soul and that the face is the soul of the body. Crap, now I'm confused. Anyway, if Stella gets glasses, they will just magnify the power of her soul, highlight her beautiful eyes, and possibly, shoot lasers to fend off bullies.

I’ve been hearing that many are concerned about Stella and wondering what’s up with her big blue eyes. To be honest, I keep sitting down to write about it, only to bail out and head directly to gossip blogs or pediatric eye health websites. The latter are now just as addictive as the former–but thankfully they don’t erode your soul. There are just too many details to convey! Too many questions! Too many nuances! Nuances can be real nuisances, you know.

Several weeks have passed since Stella’s ER visit during which doctors witnessed her eyes crossing and ruled out scary causes via a head CT scan. They stamped the nebulous “convergence spasms” n0n-diagnosis in our brains and promised they’d go above and beyond to help us to get in to see the head of ophthalmology at Children’s, Dr. Weiss, as soon as possible. As I fully expected, this never happened. They arranged for us to see another ophthalmologist, at a clinic that’s further away, after a two-and-a-half-week wait. All appointments are double- and triple-booked, so Stella is clearly not alone.

During our appointment, the ophthalmologist-who-is-not-Weiss and some other person, whose name and role I should certainly have noted, did a very thorough exam of Stella’s eyes. They dilated her eyes, with drops that nearly caused Stella’s eyeballs to unhelpfully shoot right out of her head due to sheer force of rage. They directed Stella’s gaze through lenses, at animatronic stuffed puppies and stickers, and on flicking, fast-moving fingers. They peered into her eyes through goggles that seemed to meld “space-age mind-reading device” with “old-timey miner helmet.”

Then, in very matter-of-fact fashion, the ophthalmologist told us that Stella is farsighted, and that they “think” she has accommodative esotropia, a type of strabismus (yep, I called it, and the ER can suck it). The doctor wrote a relatively strong prescription for glasses. This was big news in a way, but we took it well, considering the many worse scenarios we’d been ruminating.

Backing up. All toddlers are farsighted. They naturally outgrow it as their eyes get bigger and their vision develops. (By the way: Farsighted eyes are short eyes. Nearsighted eyes are long. Now you know.) Stella’s farsightedness is slightly above average for her age. Stella’s left eye is a bit more farsighted than her right, but the difference is not enough for concern. If her eyes never crossed, we were told, glasses wouldn’t be a consideration. The whole point of the glasses, we’re told, is to decrease strain in order to prevent her eyes from crossing. Because if Stella’s eyes start to cross more and more, her vision will suffer. Her brain, in an attempt to see clearly with two eyes that don’t cooperate with one another, would likely shut off one of her eyes (a condition called ambylopia). This would cause problems with depth perception and peripheral vision, among other potential worries. (Update: She totally wound up with amblyopia. Check it.)

Above all else, of course, we want to prevent problems with Stella’s vision–she gets frustrated enough already, trust me! Glasses are certainly nothing to cry about (though I have). But they will greatly impact her vision, for better or even possibly for worse. At this point, Stella rarely crosses her eyes. The last time I saw it, a couple weeks ago, it happened for about two seconds while she stared off into space–her right eye drifted in a bit, but snapped right back into place when I said, “Stella! Over here!” With accommodative esotropia, the crossing is expected to happen when looking at things up close. I think it’s possible or even likely that she has accommodative esotropia and needs glasses, but when I consult my gut, it doesn’t quite add up. I need a little more convincing before we move ahead with glasses. Yes, Stella’s doctors probably view me as a giant hemorrhoid. I am a second-guessing, question-asking pain in the ass that erupts at inconvenient times and makes it hard to sit down and relax. And proud of it. Pass the Preparation H.

I found a developmental optometrist via strabismus.org, and Stella and I ventured downtown for a second opinion. We only went to one wrong building and I only placed one out-of-breath phone call before we arrived seven minutes late at the correct destination–not bad! As suggested, Cody arranged for Children’s to send over the charts and notes from her previous exam. The optometrist reviewed them and conducted her own, less intensive exam with Stella, to see for herself how Stella’s eyes behaved.

Turns out that doctor number 2, after warning me that she has a “very different philosophy” from that of Children’s, strongly recommends holding off on glasses, and coming back to check Stella’s eyes in two months. A “wait and see” approach. (How’d that pun get in there?) Her opinion is that a strong glasses prescription is too aggressive at this point, because Stella’s eyes cross so rarely. She couldn’t get Stella’s eyes to cross during the exam–though she thought she may’ve seen one of them drift in very, very briefly at the end, while I got our stuff together and a tired Stella stared into space. During the previous exam, they put things right in front of Stella’s eye, moving to the center of her face and flicking quickly back out to the side. Again, far more aggressive. So, in the previous exam, Stella’s eyes did cross, but as I found out from doctor number two’s reading of the notes, only small number of times despite the intensive effort to get them to cross.

Here’s the thing that keeps me up at night. There is evidence that early intervention with strabismus reduces the risk of vision loss and other problems. Other studies inform me that glasses can inhibit the natural decrease in farsightedness that occurs at Stella’s age. We have a doctor on either side, for and against glasses. We also have solid research on either side, for and against glasses. I don’t know what Stella needs, and that isn’t a good feeling.

In a foll0w-up call with the ophthalmologist at Children’s, the one who prescribed glasses, I asked a lot of questions. During this chat, she tossed in, casually as an aside, “Stella has great vision in both eyes.” And that’s when confusion overload caused my own eyes to roll in and then drop out of my head. Turns out Stella’s visual acuity (acuteness or clearness of vision) is above average for her age. And she can track objects with her eyes very well. She, like most toddlers, has incredible focusing power. Stella can bring images into focus that adults with similar farsightedness just couldn’t sharpen. At the end of our talk, this doctor did reluctantly suggest that we could hold off on glasses but that she believes Stella’s eyes will start crossing more and more in the months ahead. (Update: This doctor was spot-on. I feel silly for delaying glasses at all. But you know what they say about hindsight: It’s a manipulative bitch!)

The consensus is that a short period of waiting is l0w-risk. Stella has great balance and her gross motor skills have always been ahead of schedule, she knows all the letters of the alphabet and numbers up to ten, and loves to read with us and page through books on her own. These are all reassuring signs that even if there is an issue requiring glasses, her vision is not hindering her at this point. On the other hand, Stella rubs her eyes a lot, and sometimes I wonder if the rubbing is really also “covering,” a behavior consistent with accommodative esotropia in which she is blocking one eye in order to help focus. She also stares into space quite often–but don’t most one-year-olds do that, especially when tired? It’s all so unclear (another pun?), so I find myself staring into her eyes all the time, looking for answers. Sometimes I think I see her eyes misaligned for a fraction of a second, but I’m never sure.

The optometrist told me that Stella is too young for vision therapy (eye exercises to correct vision problems), but that I should get Stella outside as much as possible, encourage her to crawl, and do “eye tracking” activities like rolling a ball back and forth. We’re going to get one of those collapsible fabric tunnels to get the crawling underway, and we’re spending even more time at the playground than before. I suspect it won’t make a huge difference, but you never know. And it’s something that, to some extent, I can control. Which is about as refreshing as a mimosa to my dehydrated, brunch-loving soul.

During that crazy ER trip when Stella was sick and her eyes were crossing severely–sometimes both at once, which is not really consistent with an early diagnosis of accommodative esotropia–I started blaming myself for this problem. Have I not made enough eye contact with her? Is it because she wasn’t fed in a “normal” fashion (bottle or breast) for some time as a baby, so her eyes didn’t get to “take turns” focusing during feedings? Is it because, despite our best intentions, we let her look at screens too much? Stella only crawled for two months–should I have encouraged her to crawl longer? Does she look at books too much at her young age?

During a session of my masochistic wondering, Cody made a remark that hit the spot. Among other possible sources for blame, and this is pretty ridiculous, I’d asked if we encouraged reading too much, if we rewarded that activity more than others without realizing it, because she sits in our lap to read. Cody pointed out that much of the time, she’s looking at books on her own. She’s always preferred books to other toys. She just loves books. He said, “That’s just who she is.”

He’s right. To the full extent possible, she calls her own shots. She has her own interests and preferences and personality that have little to do with me. I’m not, in fact, her. I’m her mom, and even at this early age, I only have so much influence over her. Stella is Stella. She’s an active little girl who walked at ten months. She loves to read, and cherishes her books above all other objects (except maybe Pup Pup). She couldn’t tolerate my milk but thrived on hypoallergenic formula while courageously overcoming a feeding aversion and moving on to develop a passion for cheese. She loves to do whatever we do, and that includes watching basketball when Daddy tunes in to a game and looking at pictures of herself on the computer and my iPhone at times. This eye issue, whatever it is and however it’s treated, is not so much a “problem” but just part of who Stella is. It’s not anyone’s fault. It just “is.” It’s something that needs to be addressed, yes. Something to lament or torment myself over? No.

After the initial diagnosis, I took Stella to several offices and shops to try on glasses. She hated it. I think the longest she tolerated wearing a pair was about four seconds, and that was with a very pained and confused expression on her face, and it required that I keep her fingers occupied–with a salted caramel cupcake. Yep, I really did resort to that. But since then, we’ve collected about six books featuring characters with glasses or getting glasses or finding amazing glasses. By the way, Stella and I absolutely love GOGGLES! by Ezra Jack Keats. As a result, her enthsiasm for glasses is growing, and it could come in handy. It would be great if Stella didn’t need glasses, to save us all extra hassle and to avoid inevitable battles over her having to wear them. But if after a third opinion (I’m working on that) and a few weeks of watching and waiting, Stella does need specs, we’ll figure it out. She’ll come around. She always does. My goal is to be ever positive, and as resilient as Stella.

No acute abnormalities.

This is part of a new segment I’m calling “Eye on Stella: Strabismus Watch 2010.” Sorry. I just thought that was kind of funny. And I’m running with any humor I can find these days.

The ER, whose job it is to save lives and not provide conclusive diagnoses, called Stella’s condition “convergence spasms.” A quick google search on this term terrified me (apparently, in some cases it’s brought on by hysteria–Stella’s tantrums aren’t THAT bad), and thankfully led me in another direction. After some research, and due to the nature of what actually happens to Stella’s eyes on occasion, I’m convinced that they’re incorrect. My theory is that Stella has the treatable, relatively common condition known as intermittent strabmismus, known to flare up during times of stress, fatigue, or illness. Of course, last time I checked I was a stay-at-home mom and copywriter–not an ophthalmologist. Though, I did diagnose my husband with photography-induced crazy-eye. Nailed that one.

So, last Friday. It was:

The culmination of a week during which Stella barely ate and lost a whole pound of weight (at least), due to a bastard of a cold entailing massive congestion and a cough that could drown out a chainsaw.

The day Stella may have bumped her head on the window sill in the kitchen. I was making lunch, heard a scream, and only saw what happened out of the corner of my eye.

When her eyes rolled in severely, a total of ten times by 11pm for two to ten minutes per spell. When this happened, she couldn’t see remotely straight.

The evening we headed to her doctor’s office having snagged the last appointment of the day, waited as they paged neurology at Children’s, then headed to the ER, where they awaited our arrival and Stella was not allowed to eat or drink for several hours and underwent a head CT scan that showed “no acute abnormalities.”

Since that day, I’ve been carrying around a feeling that threatens to burst my chest. It ebbs and flows. It makes me cry, sometimes. It makes me think about what-if’s and the meaning of life. It makes me wonder, once again, if I’m strong enough to survive parenthood. But I can’t quite pinpoint it. It’s too vague and all-encompassing to grasp. So I keep wondering what it is. I don’t think it’s as simple as “anxiety” or “fear.” It’s something to do with those. But more do to with love. It is absolutely huge and it is always there, probably in every parent, but right now it’s much too close to the surface. Which makes it hard to function.

On the other hand, after unthinkable tumors and lesions and brain bleeding were ruled out, I am obviously extremely relieved that the issue appears to be isolated to her eyes–or more specifically the muscles that control her eyes. If I’m right and it’s strabismus, early intervention ensures an excellent prognosis, ideally achieved through vision therapy (eye exercises) and maybe a patch to strengthen the weaker eye (which seems to be her right one). But I’m having a hard time as we navigate the two weeks that separate us from her ophthalmology appointment at Children’s Hospital. Every time she cries or screams in frustration or stares off into space or rubs her eye or refuses to nap or has a tantrum, I feel a contained form of panic rise up and I’m gripped by a question that is more of an all-encompassing mentality: What is wrong? This is a terrible way to live, really. A mode of existence encouraged by the worst-case-scenario culture of the internet, where I spend too much time. It’s a way of being that I am familiar with, as a worrywart by nature and having gone through Stella’s feeding aversion with her, but it’s currently heightened. Maybe there’s a touch of PTSD-like trauma from our tube days. Following Friday’s scare, I jump too quickly to the idea of wrongness. But! There are also times in which I see more clearly and with more appreciation everything that is right. The contrast between the two is sharp. It makes me ache.

I sometimes wonder what is wrong with me, and the way I see–the world and myself. Why is this all so hard for me? Why am I so jumpy around Stella since Friday? Why does it sometimes feel as if I walk on eggshells through life and motherhood?

As I sit here, I’m afraid of the radiation of her CT scan (ugh, do I remember correctly that they had to run it twice? why didn’t they work with us to keep her still in order to get it right on the first try?) and of an admittedly imagined potential for vision loss (could this nebulous eye issue make life harder for Stella?). Since Friday, I’ve seen her right eye drift in very briefly a couple times, and it jolts my entire nervous system like an electrical current. I’m disturbed when I see her eyes misaligned, not because she is any less beautiful or sweet for it, but because it’s a signal that something is likely amiss with my baby–something I don’t understand. What’s causing it? What does it mean? How will it affect her? My mind fills in the blanks, creating scenarios and possibilities with whatever is lying around: fear, anxiety, hope, and love so strong I can hardly bear it sometimes.

Back when Stella wouldn’t eat, I always felt 100% convinced that in the end, she would be just fine. Beneath all the panic was a kernel of certainty. It’s still there.

Just, wow.

Stella keeps busy at the ER. Thankfully, none of the many available tubes were used during the ER visit. (Sorry, inside joke.)

We were back at the ER at Children’s Hospital last night, our old stomping grounds. It’s a long story that I will tell soon. But all I can right now is “wow.” All the things I thought were so hard lately, all the things I’d been tired and complaining about, my occasional shortage of patience with Stella during a terrible cold, my lingering fear about her eating, my lack of perspective despite Stella’s earlier health challenges… they’re all punching me in the face simultaneously. And I’ve made the mistake of using Vicks tissues on my eyes while crying. Bad move. It feels like my eyes are radioactive–Cody tells me they’re not glowing but I’m pretty sure I just saw some sparkly green stuff shoot out of my pupils. I was a fool. Now I’m just scared.

A head CT scan did rule out some horrifying stuff. Which is great. But serious questions about my sweet Stella’s eyes remain. A nebulous initial diagnosis hangs in the air. Simply put, this is a rare situation. As one doctor put it: “Odd.” As another doctor put it: “I don’t like it.”  My mission for now is to get Stella an appointment with the head ophthalmologist at Children’s Hospital. As soon as humanly possible. I find myself sinking back into old habits, from the days of Stella’s feeding aversion, spending any free moment researching, grasping for answers, even though we’ve yet to see the proper specialist.

I feel like such a jerk for not appreciating more how well Stella has been doing. IS doing! This is just one more challenge she’ll overcome. I can’t overstate how incredibly lucky I am to have her. And no matter what the outcome or prognosis or course of treatment: STELLA IS PERFECT JUST THE WAY SHE IS. Always has been.

There’s so much to this story. I look forward to sharing it when I have regained a bit of composure.