eye patch

My own pilot study: Microwaves’ effectiveness in increasing compliance with vision training

Posted on by amberhj

The solution was there, sitting in the corner of the kitchen all along. My microwave timer has saved patching. The  obtrusive but helpful-in-a-pinch black box has also helped salvage the vision therapy we do at home. Cue an annoying series of loud, celebratory beeps!

It makes sense. The only reason women endure childbirth is because we know that it will end in a few (okay, maybe 32) hours. It’s a relatively short timetable. This is why, at the Cape Cod Bay Basketball Camp, I managed to swallow suffering and push myself to the limit of heat exhaustion and muscle failure during drills on sizzling hot blacktop that threatened to melt the soles of my black Nike hightops. It’s how I now carry my giant toddler home from the park down the street, when we’re running behind which is always, even when my arm is about to detach and my grimace nearly devours my face. The end is in sight.

Over recent weeks, Stella did her best to refuse to patch. Which meant I spent all day trying to eek out small periods of patching in order to accumulate two hours’ worth. But last week, the answer suddenly came to me. I took her hand and led her to the holy shrine of now-passe cooking technology that is the microwave, and said, “It’s patching time. So we’re going to set the timer for 90 minutes, and when the timer beeps, you can take it off yourself!” I said it the way you would say, oh, “We’re going to Disney World right now. When this timer goes off, you can eat ice cream while riding the tea cups with Mickey Mouse!” As if Tinkerbell had cast a magic spell, Stella quietly allowed me put the patch on the glasses and place them on her face without any fight or resistance or complaint whatsoever. It has been working ever since. Trust me this is just as miraculous as, say, seeing Jesus in a piece of toast.

So yesterday I tried applying this super brilliant countdown strategy to vision therapy. We are currently only doing very physical, “vestibular” activities (spinning, rolling, etc.), and they go fast (you know, when they go). I turned into Jack Bauer, set the timer for 15 minutes, and informed Stella that we had to do four eye games before the timer went off. I told her this with the urgency of a counter-terrorist expert called in to thwart an impending explosion. Only my voice was much, much higher, more enthusiastic. It helped! Though by about 10 minutes, we were significantly derailed by someone’s whining and avoidance tactics. So, I’ll split “eye games” up into two 10-minute sessions, spread apart, and see how it goes. Aaaaaand that sentence shows clearly how such mind-numbing minutia has officially taken over my life. Hey, we do what works, and you’ve got to celebrate the little triumphs (our children’s and our own), right? RIGHT? [Insert guzzle of wine directly from the bottle.]

Please excuse me while I go high-five Stella and snuggle with the microwave.

Knowing when to worry, and when not to

Posted on by amberhj

When I was an infant, I had to wear booties attached by a bar. The goal was to straighten out my legs. It worked, but my legs are a bit S-shaped to this day. They curve oddly at the knee, a quirk noticed by various coaches in middle and high school. But you know what? It’s subtle, and hasn’t been an issue. At all.

It just occurred to me that if Stella had needed a bit of leg straightening, even in this simple, relatively painless manner, I’d have been worried sick. Stomach tied in knots. All for nothing.

Stella’s foray with the feeding tube, and her eyeglasses and eye patch should be no different, really. I don’t mean to dismiss them, just to put them in perspective. I’ve let go of a lot of the anxiety surrounding them, but perhaps too much remains at times. It’s pointless, anyway. Counterproductive, even. She’s doing wonderfully.

There’s a huge lesson there. Hopefully it will sink in. This realization could help make 2011 a fabulous year.

P.S. Happy new year!

The eyes don’t have it.

Posted on by amberhj

I’ve always been proud of my perfect vision. I’ve bragged about it openly, and came to appreciate it even more after Stella’s visual challenges revealed the complexity and wonder of human eyesight. “I’m so lucky and blessed,” I thought, darting my hawk eyes around to appreciate my crystal clear view of life. Turns out it’s not that simple. News flash: My vision is decidedly imperfect. And if I hadn’t been so blinded by pride, perhaps, I would’ve realized it a lot sooner. But the realization didn’t come until Stella’s in-office vision therapy session today.

If you saw one of my recent posts at Little Four Eyes, you know about Stella’s experience with the quoits vectogram and how it showed that she can see in 3D! Well, today we did the same exercise, with a twist, and it showed that while Stella has a decent amount of stereoscopy, she has a hard time recovering 3D vision if the therapist “breaks” the illusion and then brings the sheets back into place for stereoscopic viewing. It takes Stella a long time to re-fuse the images after briefly losing fusion. It’s something we can work on, and greatly improve, according to our vision therapist. I feel confident that Stella will overcome this issue, and it helps that Stella was a rock star during vision therapy today. Her hand-eye coordination has come so very far. You should have seen her throwing beanbags into squares, tracking fluffy bumblebees, honing in on moving light-up targets, and stringing beads onto wobbly string! A thing of beauty, I tell you! Because of her improvement in this area, I’m now to shift our at-home vision therapy efforts toward making her eyes work across longer distances. Don’t ask me how I’ll capture her attention across the room. At times, I can barely achieve this with my face directly in hers. A way will be found, after much frustration and shouting in a chipper voice and bribing with chocolate chips. Or whatever.

At the end of today’s session, in an effort to help me understand the quoits vectogram, Stella’s vision therapist let me put on the polarized glasses and do the exercise myself. Drum roll, please… My performance was shockingly poor! And you know, I could tell before the therapist said a word. During the exercise, I sensed that it was taking my eyes (brain?) a long time to fuse the images. Simply put, it was difficult. “Maybe I have a vision problem,” I thought out loud, barely believing my plainly less-than-perfect eyes. According to the vision therapist, Stella actually performed better than me on the initial fusing of the rope circles! It took me longer! It seems I suppress input from one of my eyes when challenged to track closer objects and movement, but my eyes don’t cross the way Stella’s do. I’m guessing that’s because I don’t have Stella’s farsightedness, which puts extra stress on her eyes.

I was in shock! Sort of. But then I thought about a few incidents, and the testing results made sense. When I was in middle school, I tried refereeing a little kids’ soccer game. Fresh air, sunshine, control over younger humans–it seemed like the perfect way to earn money! But I forgot to add “barrage of insults” to the list of perks. The parents hated me, and heckled me like Red Sox fans at a Yankees game. It. Was. Brutal. They were a-holes, yes. But they weren’t wrong that I sucked. I absolutely could not follow the action close enough to make calls. Apparently, as the parents of one team made painfully clear, one kid was checking everyone else constantly. Oh I tried. But no matter how close I got or how hard I tried to lock my eyes on him, I just could not see what the parents were seeing. I couldn’t follow along, couldn’t catch the little movements. In a way, I felt blind. Clueless. Didn’t help that the parents turned me into their punching bag–that doesn’t tend to sharpen performance, you know? I still fume when I think about that, and if I could rewind my life and go back to that fall morning, I’d handle the scenario soooooo much differently. It would’ve involved a string of obscenities and several disturbing gestures. Perhaps assault with a deadly whistle. Nothing those kids didn’t see at home with their wildebeest parents, I’m sure.

Come to think of it, the same tracking issue plagued me during my sports career. Basketball was my passion, but I played pretty much on instinct and with general, big-picture court awareness. I swear that I never actually looked at anything in particular. I didn’t look at the basket when I shot, I didn’t look at the ball directly as I caught it. I didn’t look at my receiver when making a pass. Never actually even saw specific people in front of me while running a play as my high school team’s point guard. It worked out okay, but I was limited. I always wondered why I couldn’t get to the next level and become a really savvy, strategic player. I had the feeling that there was a deeper level of the game I couldn’t access, and it was frustrating. My husband doesn’t have that problem. He’s a fantastic, very tuned-in point guard who can watch individual players and movement and see the small details within the flow of the game. All I had was a very general sense of what was going on. Even though my eyesight has always been 20/20, somehow, it was foggy.

I now hope that, when all is said and done, and vision therapy and patching and early childhood are behind us, Stella will wind up with better vision than me. With her glasses, anyway. I couldn’t be happier (or prouder) about that possibility.

Excuse me while I go schedule an eye exam. For me. How refreshing.

 

 

 

Cirque de Okay

Posted on by amberhj

My official assessment is that this week’s in-office vision therapy went well. It was interesting, and eye-opening. (Once again I’ve let you down and resorted to puns.) Eye-patched Stella threw a couple blocks in frustration and engaged in impressive evasive maneuvers, but we managed to reel her back in while avoiding a fight. We totally persevered. It felt like a small victory for all of parentkind.

Helpfully, as the session got underway, the vision therapist answered all the questions I’d been asking, having gathered input from the doctor in order to do so thoroughly. And from there, she wisely kept things moving right along from exercise to exercise. In that way, Stella’s in-office vision therapy equates to a miniature three-ring circus with acts designed to mesmerize only toddlers. Imagine a large beating drum in the background and super dramatic announcer voice: “AND NOW, the great spinning disk of wonder three inches off the ground!… gasps and applause… AND NOW, the neighborhood’s tallest block tower, assembled and destroyed before your very eyes!… more gasps and applause… and now, feathers falling from the heavens… entranced silence, some “oohs,” then applause… etc. etc.!”

Here at home, Stella’s vision therapy is also a circus–one in which the elephants, lions and monkeys have escaped and are trampling the ring master and audience. It’s almost impossible to keep the show going for more than three minutes, so we do home-based vision therapy in small stints or whenever she shows interest. Sometimes, she even asks to do eye patch games! Yep. My heart almost stopped the first time she requested vision therapy. In order to better seize these moments, I pre-cut and keep handy eye patches of Magic Tape that I can quickly slap on her glasses’ right lens. Previously, I’d to stop the presses, take off her glasses, put two pieces of tape on the right lens, then carefully and annoyingly cut off the tape edges around the lens resulting in tons of tiny pieces of tape stuck to my fingers and scissors which is utterly unhelpful when you are in a major hurry in trying to take advantage of a very small window of  toddler attention.

At this week’s appointment, opening acts included a matching game–simple but smart in that it forced Stella to hold an image in mind and then scan the floor for its equal. Then, there it was. The therapist brought out this large spinning disc with slim, straight back and white stripes. On this briskly rotating table, the size of a super duper extra large pizza, the vision therapist placed some small colored blocks. Stella’s job was to snag whichever color the therapist dictated. It took a moment to teach Stella to resist grabbing the disc and to only touch the blocks. “Okay, Stella! Get the red block! No, not the table, the red block! You can do it!” She got a couple, placing her hand on them and slowly dragging them off the disc before falling into what looked like a state of hypnosis. So I put her in my lap and gave her a little pep talk/verbal assistance.  I did not, of course, help her get the blocks off the disc. I did say, “Ooh… here comes the blue block… here it comes…. here it comes…” to help keep her engaged and tracking. She got through about three rounds of this exercise (six or so blocks per round)–HOORAY! It was clear, and interesting, to me and the therapist that this was extremely challenging and exhausting for Stella. She almost fell asleep as the therapist stashed the disc away, a marked change from her energy level immediately preceding. We’re talking a full-on daze and string of yawns. Those moving stripes forced her to work so hard to focus, and it took a lot out of her. Even with Stella’s frustration level climbing higher due to fatigue, we plodded steadily through more “eye games.” But she did all the exercises presented. Some more easily, accurately, and agreeably than others. But she hung in there.

The imposing disc of wonder wasn’t the only overt difficulty. In particular, Stella seems quite uncomfortable tracking things that fall from just a couple feet above (with her left eye, anyway). She doesn’t even want to look up for the “balloon game” anymore, wherein I simply toss her a balloon from my standing position so that it falls right toward her hands for catching. But with a small but fun bit of dancing around with scarves and feathers, the therapist got her to follow their descent with her eyes and catch, with me holding her arms to receive them. Chalk up another victory for Stella’s left eye! And hope and sanity.

The session–the stretch following the disc exercise, anyway–reminded me of my basketball-playing days. Early on I was taught to practice free throws after games or drills, when my arms and body were nearly depleted. Because that’s how you get good, that’s how you become consistent, that’s how you hit the winning free-throw at the end of a long battle of a game. “Stella’s left eye is going to be a champion and leading scorer,” I thought! But that’s not QUITE how it’s going to work with Stella’s vision therapy at this point. The therapist noted that she’d save the more tiring exercises for the end of sessions in the future, so as to lower Stella’s frustration level throughout. This makes total sense, doesn’t it? It’s important for Stella to feel motivated or at least willing to go on. If she starts to feel more defeated than successful, her resistance would surely skyrocket. No, thanks!

This week’s vision therapy appointment granted me a couple realizations. First off, good vision therapists and good mothers have a core attribute in common: a careful balance of assertiveness. You can’t use brute force and you also can’t let the kid off the hook. You have to be firm, consistent and persistent, while mindful of the temperament of the individual child. Secondly, the fact that certain exercises are so uncomfortable for Stella made me understand how hard sports or perhaps even reading would likely be for her without the help of vision therapy. I don’t know if we’ll achieve visual perfection, but I have faith that Stella and her eyes will be very much okay.

With feathers, spinning circles, constant encouragement and gentle but insistent correction, we are preparing Stella for the visual demands that lie ahead in the circus of life. “…AND NOW, the social interaction and focus-requiring structure of preschool!… hearty applause… AND NOW, organized athletics of some kind…borderline obnoxious cheers!… AND NOW, completion of a puzzle without angry tossing of the pieces!… And the crowd goes wild!“

Rough patch

Posted on by amberhj

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?

Because we just can’t get enough therapy.

Posted on by amberhj

It’s official. Today, I scheduled Stella for weekly, ongoing vision therapy. I feel victorious! As in, “We’re going to the Super Bowl, baby!” (I probably need to get out more.) You see, our second opinion (the first being Seattle Children’s Hospital, where vision therapy was never mentioned, and the third being our current doctor) told us that Stella was far too young to do vision therapy. (How many times can I say “vision therapy?” Let’s see, shall we?*) Also, as I’ve said a million times lately, I just finished reading Fixing My Gaze, and it got me so pumped up about vision therapy that I felt physically uncomfortable with the knowledge that we weren’t pursuing vision therapy. And not only has Stella been taking off her glasses more, she’s been staring into space and rubbing her eyes frequently, too, as she did before getting glasses. Now I’ll have someone to gauge Stella’s vision regularly, someone I can grill in person and upon whom I can dump all my concerns on a weekly basis. Hooray for vision therapy!

So every Wednesday morning, we’ll be headed out for some mindblowingly fun “eye games” (aka “vision therapy”). That’s my brilliant branding for this new adventure. Wearing an eye patch is currently called, “the eye patch game.” I know, I know. My advertising background is coming through in its full luminescence here, I’m a genius and I put Don Draper to shame. Yes, yes and yes.

Upon confirming our slot, the vision therapy office emailed me a preparatory doc entitled, “VISION THERAPY: What you need to know.” Highlights include:

  • Vision therapy programs are individualized. “Each session consists of 45 minutes of one on one care combined with a program of daily home oriented therapy.”
  • We will be given “vision therapy handouts and supplies for home therapy use that will change periodically.”
  • “The majority of patients in a once a week program are in vision therapy for nine months to one year.”
  • Progress evaluations must be scheduled every three months regardless of the number of vision therapy sessions that have taken place during that time.

I am totally bringing chocolate chips, maybe even a baker’s dozen from Trophy Cupcakes, to each session. Whatever it takes to reward and encourage cooperation! Stella is 24 months old and is going to be asked to “focus” (in one way or another) for 45 minutes straight. I know she can do it. I’ve seen her concentrate intensely on an enormous ice cream cone for at least that long. I know we can make it work and I know this doctor knows what she’s doing and is fully aware that Stella just turned two. I know I know I know. But (shockingly) I’m a little nervous. Kind of like that time I bitched endlessly and fought like hell to get a promotion, then when it was finally handed to me, I freaked out and realized I didn’t know what the hell I was doing. “Idiots! What were they thinking giving me all these new responsibilities! I’m not ready for this! Oh wait…”

But seriously, it’s all coming together. Another bit of encouragement emerged on Monday evening at our PEPS (Program for Early Parent Support) gathering. (PEPS is just a bunch of parents-to-be that get tossed into a group that starts meeting weekly once the babies are born, within a month or so of each other. Basically, for new parents, it’s a way of feeling less insane.) Turns out one of the mothers in our PEPS group had double vision as a child, mainly when tired–fatigue is also what triggers Stella’s eye crossing. She admitted that in an attempt to see clearly, she wound up walking around with one eye closed. Her mother got used to seeing this, and like most young kids she was very good at compensating for the vision problem. As a result, she said her mom pretty much let it go until a friend called her out on it. She was told to wear a patch, but her parents opted for vision therapy instead! My kind of people! She did vision therapy for a year at around age six and that did the proverbial (literal?) trick–it’s just amazing to me. She’s had control of her eyes, and no double vision, since. Her recollection is that the sessions were fun, with engaging activities, but that she felt very tired afterward. And, because apparently she can read minds and intuited my concern about Stella’s age, she mentioned that while she was school age during her vision therapy, kids of all ages could found in the waiting room. (Thank you, PEPS pal.)

This sort of discovery keeps happening! Stella’s glasses and patch have been the gateway to all kinds of stories about patching and eye crossing and visual whatnot from just about everyone we know, and even some we don’t. It’s news to us but apparently everyone has a sibling or close relative who faced the same type of vision issues in childhood. I should’ve known! In Fixing My Gaze, neurobiologist extraordinaire Susan Barry points out that about one in 25 children has strabismus or a binocular vision problem. That’s roughly one in every classroom. It’s become clear that Stella is in good company, and it all feels so normal now. Which blows my mind. Normal and I aren’t close but I’ve always wanted to get to know him. Some say he’s boring but I find him absolutely fascinating!

One other bit of insight I took away from that vision therapy handout: This shit is going to be expensive. Did I mention I’m looking for freelance writing gigs? Go ahead and picture me, out on the internet highway, holding a shabby virtual sign that reads, “WILL WRITE FOR VISION THERAPY.” See? Completely normal.

P.S. Found this at covd.org, a “World Health News Today” segment on vision therapy for children.

* Tally: 19 “vision therapy” mentions. 20 if you count that one. I can totally do better. Vision therapy! 21.

Stella is two.

Posted on by amberhj

Stella is two. She wishes she lived at the beach.

Stella is two. She wishes she lived at the beach.

Stella turned two years old last week, during our beach vacation. She’s still singing happy birthday to herself, talking about birthday cake, and reminiscing about blowing out candles and good times with her “Happy Birthday balloon with smiley faces.” The balloon was accidentally released into the sky, but the sight of it drifting to ever more impossible heights pleased everyone, including Stella, and somehow seemed appropriate and celebratory. I know what you’re thinking. “How nice!” and “Hopefully no sea animals were killed by the balloon remnants.”

So Stella’s two now. All of sudden, she talks in complete sentences, giving crucial information, and answering questions. (Yeah, she shouts commands, but mastered that long ago. I guess they’re just more specific now.) Though she can string words together like a champ, it’s the short one-liners I enjoy most. Must be the advertising copywriter in me. Some examples of dialogue:

Me, in response to her crying: “What’s wrong?”
Stella: “My belly hurts! And my knee.”

or

Me: “Where are your glasses?”
Stella (walks over to the table, where her specs sit): “Right there!”

or

Stella: “I’m running! I’m running down the street!”
Me: “Yes you are running! Running down the street!”

or

Stella (returning to room after leaving for 5 seconds): “I’m BACK!”

Now that Stella is two, she treats her glasses with more care. She usually takes them off with two hands and carefully folds them before handing them to me. We switched to using magic tape over her right lens, instead of a solid patch, at her ophthalmologist’s suggestion. That’s made patching harder, I think because her right eye is still getting input but it’s really bad input, instead of being totally blocked out. But overall, she’s patching like a champ. When she peeks over the top of the glasses, I say “No peeking,” and that usually stops it at least for a little while. I use screen time as the “patch game”… so if she peeks while watching say, “Here Comes Science” DVD, I say “No peeking,” and if she peeks again, I turn off the TV and say, “You’re peeking so the patch game is over.” It works pretty well! Stella’s doctor was very helpful in coming up with strategies like these.

Stella really likes to nap. She asks to nap often. I’ve heard patching causes strain that can make kids cranky and tired. Plus, we went on a long vacation that involved a three-hour time change. In any case, this kid knows when she’s tired, and I totally appreciate that.

Her raw/giant-carrot-chomping phase seems to have waned, but Stella is now eating lemons like they’re apples, waxy rind and all. Her current favorite foods are: chocolate ice cream, mac and cheese, vanilla ice cream, extra cheesy mac and cheese, sliced almonds, peaches, cheese in any form, ice cream, cottage cheese, bagels, and carrots. And ice cream and mac and cheese. We are so alike in some ways.

We gave her a really cute wooden play kitchen center thingee for her birthday. She loves it–washing dishes and putting lids on pots, turning stove knobs, and removing the faucet. I’ve been letting her play with dried beans and bowls and my large kitchen utensils for a while. She’s really kicking things up a notch now and pretending to cook. Though she hasn’t made anything but mac and cheese yet, I expect her to branch out soon, menu-wise.

Stella is completely, 110% obsessed with the aforementioned “Here Comes Science” DVD featuring music videos for science-centric songs by They Might Be Giants (TMBG). Against my idealistic intentions, I let her watch it every day, because it’s an effective way of launching the “eye patch game” (the game? wearing her patch). During vacation, she watched it two or three times a day. She watched more TV that week than the rest of her life combined. She was teething, jet-lagged, patching, and got a fever and gastro bug, so I just let her go nuts with it (though at times I really did just have to start cutting her off). It was all worth it because now I get to hear appropriately bespectacled Stella belt out scientific yet catchy gems such as:

“ROY G. BIV is a colorful man!”

“STEEEEEAM is a GAS!”

“Meet the elemeeeeeents!”

She is fiery and fabulous and has me by the balls. She’s sweet and strong and fast as lightening. She’s a ruthless tyrant and cuddly snuggler. A monkey and a mastermind. She’ll read book after book after book until the cows come home, then happily “moo” right along with them. I may be diagnosed with severe OCD for admitting this, but I say, mostly in my head but sometimes out loud, at least hundred times a day in the exact same way, “I sure do love my Stelly girl.” I really, really, really do.

***

For your enjoyment, in celebration of Stella’s 2nd birthday, here are the “music videos” (do they still call them that?) corresponding with the lyrics above:

ROY G. BIV

MEET THE ELEMENTS

SOLID LIQUID GAS

I’ll post a birthday pic

Free webinar by Susan Barry: How the system lets down children with vision problems

Posted on by amberhj

Here we go again. Like tube feeding, vision is an area in which children aren’t getting the care and solutions they need and deserve. Stella just started patching, because her brain was starting to favor her right (strong) eye. And it’s already become clear (fun with puns!) that without extra effort and research on my part, her outcome, even though we are patching as directed, would be far less than optimal. Thankfully, I have the time and ability and insurance coverage to make it all happen. But I keep wondering, what about the many parents of children with vision and feeding tubes and other health issues who don’t?

Luckily for us anyway, three recent and perfectly timed events have made me feel that I’m on the right track in terms of how to approach Stella’s treatment…

1.) We recently chose a new eye doctor for Stella (our third opinion became our number one choice!) who emphasizes vision therapy in treating eye issues like Stella’s (conditions like strabismus, accommodative esotropia, ambylopia, etc. etc.). She was vastly superior to the others in terms of her attentiveness to Stella as a human being, her ability to do vision therapy with the very young (our second opinion did vision therapy, but said Stella wouldn’t be eligible for years), and her support and tips on how to patch successfully. Seattle Children’s Hospital? They just handed me some adhesive patches to stick on Stella’s almost-two-year-old eyes, with almost no explanation or and certainly no acknowledgement of how big a deal it was, noting only that patching is “not that bad.” Bullshit.

2.) I’m currently reading a ray of hope in paperback form, Fixing My Gaze by neuroscientist Susan Barry. She couldn’t see in 3D until her late 40’s (she had strabismus from early on, like Stella). The ability to see in three dimensions affects life in a myriad of ways, including the abilities to read, drive and play most sports. The book is as much about neuroplasticity as it is about vision, and I have found most of it fascinating (some of it a bit dense and technical and hard to follow). It has opened my eyes (the puns are too easy to resist here, sorry) in so many ways.

3.) Yesterday, I received an email from Stella’s new eye doctor telling me (and all her patients) about a free webinar being given by Barry, author of Fixing My Gaze, on Thursday. I was thrilled! The email, besides letting me in on a great opportunity to learn from a true knowledge leader in the field, confirmed that we’d found one of the rare doctors who can help Stella achieve her own personal best in terms of vision.

The meeting’s name pretty much says it all: “School Crossings: A Neurobiologist’s View of How Our System Fails Children With Vision Problems.” I was so thrilled to find out about this, and again, to get assurance that we’d found a wonderful doctor for Stella. One of the rare few who are truly informed about vision therapy, the kind that helped Barry see the world in full, volumous beauty.

I have only a basic understanding at this point, though it’s growing all the time. But most opthalmologists (including the one we saw at Seattle Children’s) and optometrists seem to heavily rely on patching (often alone) to address situations where the brain is favoring one eye, as is beginning to happen with Stella. When the vision imbalance is left untreated, blindness in the weak eye is likely. However, patching is not a real solution or adequate treatment for many, as upon completion of occlusion, the brain slowly reverts to favoring the same eye. Both eyes are strong after months or years of patching, or have equalized (sometimes the strong eye deteriorates due its suppression) but the brain has not learned to use the eyes together. Vision therapy is needed to get the formerly weak  (“lazy” or ambylopic) eye to coordinate with the  strong eye and create a complete, stereopic view of the world. Proper therapy often results in a long-term cure, enabling 3D vision and other vast improvements. So many children are having to settle for significant, even quality-of-life-reducing vision impairment when in fact, they could see major improvement or perhaps complete resolution of their issues.

Many doctors still believe that there is a small window in early childhood during which eye problems must be addressed, lest be rendered irreversible. Barry’s research and personal experience shatter this falsehood. For the benefit of children like Stella, Barry is shouting her discoveries from the mountaintop, and I am extremely grateful. On the other hand, as we recently embarked on the patching journey, which I was not expecting at all–I was truly blindsided (ugh, another pun?), the book has scared me and made me cry. It’s made me realize the full scope of how Stella’s vision and life experience could be impacted if she is not properly supported. Seriously, I’ve been listening to Celine Dion’s “That’s the Way It Is” and bawling, about once a day. And I’m not a Celine Dion type of person. I’m a Neko Case fanatic. But, “it’s an uphill climb and I’m feeling sorry, but I know it will come to you, yeah” kind of hits the nail on the proverbial, three-dimensional head. I’m working hard and it feels like, once again, there’s a lot on the line and if I don’t stay vigilant and question everything every doctor tells me, Stella will suffer.

Anywho, I’ve signed up for the webinar and encourage other parents of children facing visual challenges to do the same! Virtual “seating” is limited. I will blog about the talk here, in case you miss it. The details, from the original email announcement from the College of Optometrists in Vision Development (COVD):

School Crossings: A Neurobiologist’s View of How Our System Fails Children With Vision Problems
 
Hear Dr. Susan Barry answer questions about difficult school experiences that resulted from her vision problems; how, for example, she was mislabeled as a low aptitude student and assigned to a special problems class, and what her mother did to help her child succeed. And more….. including what you can do to help your child succeed!

TO REGISTER FOR THE MEETING:  Go to www.joinawebinar.com, fill in the meeting ID number 547-423-251 and your email address, click on “CONTINUE,” then fill out the brief form that comes up next and at the bottom of that screen be sure to click on “REGISTER.” 
If you have ANY difficulty registering or any problems during the webinar, contact TECH support for gotowebinar.com at 800-263-6317.

Click here to read the full press release, including more information about Susan Barry (aka “Stereo Sue”).

Back into battle! I think I’ll call it “Operation Shark Patch.”

Posted on by amberhj

I’m not even going to pretend to be positive right now. I’ll get there. But not yet. Because I’ve just been asked to do the equivalent of putting mascara on a shark. For hours each day.

Yesterday we found out that Stella is starting to favor her right eye–her left eye is just ever so slightly starting to be tuned out by the brain. So we have to patch Stella’s right eye for three to four hours daily, to force her slacker eye to work harder and get tuned back in. My first, very gentle attempts at encouraging patch use reminded me of the horrors of inserting Stella’s NG tube into her nose when she was three months old. The screaming and utter rage and fear and defiance. She will not let me stick that thing to her face–not even if it’s pink and red with music notes and hearts on it. No. Way. So I’m taking a step back and re-grouping. Ordering books about patching and pirates. Buying her a pirate costume and a DVD featuring a cast of patched puppets. Ordering five different types of patches–namely, a pirate-style patch, two styles of cloth patches that go over the glasses, and two styles of cloth patches that go under the glasses. Anything but adhesive on Stella’s skin. Seriously, F THAT. Been there, done that, and have pictures of redness and irritation to prove it. I’m not even going to TRY to patch Stella again until my patch propaganda has been absorbed, and the non-sticky patches are in hand.

Yeah. So I’m just going to go ahead and say that this blows. I was blindsided by this news in yesterday’s follow-up appointment at Seattle Children’s ophthalmology. I didn’t think this was on the horizon for Stella. Yes, a military metaphor is probably wildly inappropriate in this situation but I can’t help it: I thought we’d won the war. I had a “MISSION ACCOMPLISHED” banner hanging in our living room. Through much “strategerizing”, focus, effort, and expenditures, we got her to wear her glasses! Her eyes stopped crossing! But holy crap there is a huge battle is ahead. Could it be our toughest yet? Doesn’t matter. We have no choice! To save Stella’s vision, particularly that of her weaker left eye, we must patch her strong eye. No effing way am I going to let her eyesight and quality of life go downhill. Not when there is something I can do about it! Even if it’s as insane and seemingly impossible as putting an eye patch on the eye of a small tornado.

Guess I better set my ring tone to “Eye of the Tiger,” smear on some war paint, and do some push-ups and wind-sprints and shit. Oh wait–this is the new type of war. Where brute force is obsolete. I must infiltrate the mind and culture of my target (check! i.e. puppet DVD, books, pirate garb) and win her heart. Again. Possibly with chocolate and a new play kitchen. War really is expensive and good for the economy.

May God have mercy on our souls.