accommodative esotropia

Something Amazing Happened at Disneyland.

Posted on by amberhj

(Note: This is not a sponsored post. I don’t get near enough traffic to attract Disney’s attention.)

In May, after our first three months of OT and PT with Stella, we splurged on a trip to Disneyland. We’d been worrying and agonizing about new realizations and a new path for Stella. We’d been working hard, with some really tough days, getting into a new rhythm with daily therapy at home. We needed to have some fun. We wanted to get away. We thought Stella deserved an enormous treat. So, shockingly, we did something about it. We up and went to Disneyland.

We stayed at the Disneyland Hotel, with watersides and pools for Stella, and an enchanted tiki bar for us. An excellent choice. I shelled out a little extra for a room on one of the highest floors. I was not paying for fanciness. I was paying for pure elevation. During a wedding-related hotel stay a couple years prior in Minneapolis, we were perched in a room on the 20th floor or so. I was struck by how deeply Stella enjoyed sitting on the wide, welcoming window sill and gazing out at the city. Her eyes scanned and rested, scanned and rested, and she took it all in. She enjoyed telling us about everything going on below. The hustle and bustle could be comfortably observed from above. I wanted to give her that chance again, this time with a view of palm trees and pools and the hotel grounds. She loved the view, even laughing at kids’ funny antics in the pool way down below, and the ability to see and know what could be explored. A very sound investment, if you ask me.

We are probably one of the only families in Disneyland visitor history to actively avoid interactions with Disney characters. We saw people waiting in very long lines for a picture with Minnie. Yet, when she approached our table at Goofy’s Kitchen, dread engulfed our table and we were tempted to pull down the proverbial drapes and pretend we weren’t home. Stella wouldn’t look her way, but gave her a no-look high-five. I chatted with Minnie for a moment, exaggeratively extolling her virtues and pointing out how kind and gentle she was, then she was off to the next table, and we exhaled. I know that Stella loves Minnie, but it was too much to be on the spot and face to face. One day she’ll have the confidence to tell Santa what she wants for Christmas and perhaps interact with, or at least not be afraid of, Disney characters. She’ll do that when she is ready. She loved the parades and waved to all the characters–again, from a distance that felt manageable, from the point of view of a spectator.

There are a million anecdotes I could share, but what stands out most about the trip is one ride, and Stella’s dramatic response to it.

I didn’t expect Stella to like this ride, which involves wearing 3D glasses, spinning through space in a way that feels unpredictable, and shooting at constantly moving targets. Because it’s a total sensory bombardment, and because we (foolishly) attempted a 3D movie not long before, and she lasted 15 minutes before we just had to leave with a very distraught Stella. But she absolutely loved Midway Mania. And for her, it was vision therapy.

Why did this ride work for her? She was engaged and motivated. She loves Toy Story, she loved the “game” aspect of it, she loved seeing beloved characters who seemed to be responding to her and cheering her on, she loved feeling like she could do it herself and, I suppose, be instantly rewarded by congratulations from her favorite characters and video-game-esque sounds and scores.

After the initial shock wore off and we realized that, seemingly against all odds, she really loved this ride, we went on Midway Mania at least eight times. Which to us was a whole lot. I often had to carry her in line, but it didn’t matter. When she expressed interest in going on that ride, we made it happen. We were shocked that she could do it and wanted to do it. Not only that, but her scores improved with each successive ride. The mere fact that she could tolerate the glasses, see in 3D, and play this fast-moving interactive game at all was beyond highly encouraging, but we didn’t really let ourselves wonder what it meant for her vision. We were thrilled that she was having so much fun with it. We followed her lead.

Then, for one fabulous week after this vacation and its highly entertaining form of vision therapy, I saw (temporarily–again, just for one week) astounding residual effects. Not bad for a grand total of 50 minutes (maximum) spent on a ride. For example, Stella had previously avoided talking to our neighbors, almost completely. And we’ve lived here in this house and neighborhood for a year and a half. A day or two after our return from Disneyland, while standing in our backyard, she talked to our neighbor for about 45 minutes. On her own. Cody and I were inside, watching from the kitchen, incredulous, watching the clock and marveling at what was unfolding. Later, the neighbor told me that Stella filled her in about every aspect of Disneyland, what flowers we were growing in our yard, and more. The neighbor postponed dinner and hung in there with her for so long–they knew how big this conversation was. We all did. At school that week, Stella’s teacher remarked on how well-rested Stella seemed, how she was not getting frustrated like she used to. Her occupational therapist noticed (without our prompting or telling her about the ride or any changes we’d noticed) that Stella seemed more regulated, and more aware of and interested in people, noises, and activities around us. It’s not that Stella doesn’t notice anything usually. She does! She hears everything, for starters. But she just doesn’t always slow down, remark on, and engage us about them. She just seemed more in tune with a bigger share of the world around her.

As Stella’s developmental optometrist explained it amid a much longer and more helpful description, so much of Stella’s mental energy goes into a conscious effort to simply keep her eyes straight. Interpreting and reacting quickly and gracefully to the world around you–especially the unexpected–can be extraordinarily difficult when it takes a large share of your inner resources to simply “see!” We believe that for that brief window after Disneyland, this was no longer the case. When her eyes were better coordinated without requiring strenuous effort, her world opened up because she could relax and take it in. It was a truly beautiful sight, and I’d seen flickers of it before, when Stella did vision therapy two years ago.

And so, two weeks ago, Stella began vision therapy again. For months leading up to now, we’ve been focused on building the foundation upon which vision rests, and that includes basic motor skills, sensory integration, and postural and primitive and reflexes. That work is ongoing alongside vision therapy. Yes, another crazy ride. We’re working hard to give Stella a better view of the world, but it’s more than that. We’re working to empower her to comfortably and confidently engage with the world, and without the urgent need to keep so much of it at a safe distance.

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Spring

Posted on by amberhj

I know that our efforts in OT and PT have really just begun, but I swear I already see little buds that will one day burst into blossoms. Slowly, steadily, surely. I see her ever-so-smoothly writing letters on the chalkboard wall with a nice grip. She is sounding out the silly non-words she lays out with her set of wooden Montessori letters. Several times the other day she briefly coasted, lifting up both feet, on her balance bike in a proud first! Snail chases, slithering laps that exhaust me but thrill Stella, have replaced last week’s bear hikes, and so joyfully and so perfectly in terms of fun and therapeutic benefit! So yes, I see positive signs peaking up.

Stella’s daffodil bloomed out front alongside the walkway. So while departing for dance class, I pointed out to her that the flower she planted had finally opened up. Later upon arriving home she stopped, bent over, gently cradled the blossom in her hand–the way you would a toddler’s chin–and quietly said, “Good job, daffodil.” She revealed her sweet nature and my over-reliance on “Good job!” despite knowing better. Regardless, the encouragement is called for. Blooming takes courage, hard work, and plenty of hopeful patience. 

Onward

Posted on by amberhj

After weeks of evaluations, we are now in the thick of OT and PT appointments and daily OT and PT work at home, and sensory activities, on top of three types of patching to help fight the double vision Stella experiences. More VT (vision therapy) will come after we finish laying the foundation with OT and PT.

We swing Stella in a blanket hammock each night. We do odd-seeming but clearly very powerful reflex integration exercises. We toss bean bags, and when we miss we re-enact the errant bean bag’s flight and laugh at how it plopped on the side of the coffee table instead of landing in the laundry basket. We become bears, after: setting up a blanket cave, laying fish in a river of blue silk scarves set up across the room, and cuing up gentle river sounds on Spotify. Mama and baby bear take turns hiking to the river, hunting for fish, and then hiking back with fish in mouth. And we put that fish on a party plate because we are fancy bears, with CLASS. And it’s magic because Stella will do bear walks again and again and use flat paws like therapy dictates instead of the fist or twisted finger-tipped paw she naturally prefers. She cooperates with her “exercises” to a much greater extent than I dreamed possible. Much of it is not labeled as exercises. It’s just fun stuff we do that happens to be really beneficial. We are mindful of fitting in lots of silliness and games and stuff that have nothing to do with therapy, too. Because you’re only 4 and a half once, and you better enjoy it. And, okay, Stella’s cooperation followed an extremely rocky start to the new therapy paradigm that resulted in a two-week reward calendar that culminated in a trip to the Disney Store to get the plush toy of her choice. She chose the peas in a pod. How adorable and wholesome is that? I mean honestly.

We are also trying to figure out where Stella will go to school next year. A process that I never imagined would be this complicated and crazy. While her therapy needs and developmental status were being evaluated, all the application deadlines passed. But just in time, I found the perfect school. A private school in our neighborhood with transitional Kindergarten that would be so expensive but so worth it. But will they have a spot for Stella? Will they think she’s ready and are they willing to help support her quirks and current challenges? I don’t know. She goes in to be reviewed this weekend. It’s out of my hands now. If she doesn’t get in, I’ll have to scramble to get on waiting lists. Or something.

I’m pretty stressed out and worried again. I read endlessly about neuroplasticity, which actually helps a lot. Not only with hope for Stella’s binocular vision and associated motor skills but also for better coping and handling of stress on my part. Stella’s brain can change and so can mine. So can yours. Watch this if you don’t believe me. (I just ordered the book: The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science.)

I think we’re doing okay. We are getting most if not all of our daily exercises in every day and we are not battling. We are having some real fun along the way. Not so much with the patching, though. Most days, we have been missing one of the three types of patching. It feels like a bit too much right now–how much can you push a little one before the solution becomes a problem? But we’ll figure it out. Stella’s developmental optometrist is in constant contact with us, proactive about new solutions both short-term and long-term, and very tolerant of my incessant questioning and reporting and occasionally getting upset about it all.

Ah yes, the word of this day is “but.” As in, “This kind of feels impossible BUT we are making it work” or “This is hard and I don’t know how we’ll fit it all in BUT we will find a way” or “I am scared that Stella will hate this activity and we will fail to do what is necessary BUT I have to try” or “I know Kettle Chips aren’t healthy BUT I need them at 9:30pm on a consistent basis.”

We would do anything for Stella. Before these evaluations shed more light on the extent of the issues she faces, we felt our parenting was to blame. We have more complete answers now, and new wind under our sails! The key is a worn out cliche: just take it one day at a time. If I think about a year or two of daily OT, PT and VT exercises, and the reasons behind them, I feel sad, overwhelmed, and discouraged. If I just think about today (or even tomorrow), and what I can do to help now, I come up with creative ideas that work, and wind up feeling buoyed by small successes. Like the above bear scenario, which while a tiny drop in the therapy ocean, felt huge. She hated bear walking, and now she asks to do it again and again. Charlie Sheen, you don’t know what winning is.

My only guilty failing is in giving Stella a piece of hard candy for her nightly reflex integration exercises. It feels wrong, but I was desperate. After discussing with Stella’s occupational therapist and seeing how she worked with Stella, I plan to come up with a special toy for her to hold during nightly stretching and other exercises instead. Preferably something that lights up and features a small keyboard worth of buttons to push and explore. Tips welcome.

My daughter is so resilient. She is a bright spark that nothing can fade. I didn’t think it was possible but I am even more proud of Stella now. And sometimes, of myself too. Go figure.

Judgement Day for Stella’s Vision, Part 1: Ophthalmology’s View

Posted on by amberhj

Well, on Friday morning, Stella and I made our way to Seattle Children’s ophthalmology department for her yearly exam. The high-level stats for those keeping score and not wanting to sift through a lengthy post: Clear improvement of stereoscopy, virtually unchanged acuity (still one line different at 20/30 and 20/40, though one examiner saw equal acuity), half a diopter increase in the prescription in both eyes (still 1 diopter greater prescription for the left eye), still no crossing with her glasses, and if I want to, we can stop patching for at least a few months and see how she does. The improvement in 3D seems huge–her eyes are working together!

Here we are, at another crossroads, 14 months from Stella’s initial ophthalmology appointment wherein glasses were prescribed and followed quickly by patching, and nine-ish months from the start of vision therapy. (A typical course of vision therapy is nine to twelve months.) This was slated to be our last month of vision therapy (with regular six-months check-ins, and therapy brush-ups as necessary as Stella grows), but I’m interested in perhaps continuing for a couple months to solidify her gains and help that left eye catch up further. This will be decided in a couple weeks, during part two of Stella’s assessment, in the office of Dr. T, our developmental optometrist/vision therapy practitioner extraordinaire. I’m also eager to hear her take on the ophthalmologist’s findings and prescription.

I’d like to pause and explain why I take Stella to see both an ophthalmologist and a developmental optometrist. I’m a big proponent of vision therapy but I’d be a hypocrite if I dismissed ophthalmology, wouldn’t I? Ophthalmology may have its blind spots but I love getting another, more traditional point of view to consider so I have all the bases covered. It really, really bothers me when people write off vision therapy and developmental optometry based on ignorance and bias. When I bring it up in discussions with other parents on Little Four Eyes (mainly the Facebook discussion board), it usually gets ignored, though there are a few supportive voices. I’m learning to keep my thoughts here, in my own posts on the Little Four Eyes blog, or in welcoming vision-therapy-focused forums, so as not to seem intrusive with my rabid pro-vision therapy agenda. The horror! How controversial of me! (Insert eye roll here.) I don’t take it personally, and simply want to share what’s working for us with anyone who is unsatisfied with the status quo. Because if you look closely at the status quo, it kind of blows. Patching alone is proven less effective, typically with far less enduring results. It addresses the weak eye, but not binocularity, not the brain-eye connections involved with fusion. Amblyopia is a brain issue, not a simple eye problem. So I have created a more powerful, comprehensive plan for Stella than the traditional, ophthalmology-only path would provide. It’s not “either-or.” I’m not narrow-minded about it. Vision therapy has changed Stella’s life in multifaceted ways. Hence my enthusiasm.

Relatedly, I’m no longer so nauseatingly nervous about evaluations of Stella’s vision. It’s simple: I am confident that we have done our best. We’ve done everything possible. I know that Stella has benefited tremendously in measurable “data collection” sort of ways, and in less number-friendly ways that are clearly observable to the people who know and love her. Once again, I am reminded of her tube-feeding and weaning days. The medical system is letting down many tube-fed children, by not helping them wean when physically ready. Quality of life plummets as tube feeding continues. And why does it continue? Because dietitians and doctors are focused on numbers, rather than the child. They are concerned with milliliters of intake, weight and height percentiles, and not the child’s (or family’s) experience or enjoyment of life. They ignore the absence of the powerful but unmeasurable sensation of hunger, and hyper-focus on the measurable absence or perceived inadequacy of oral eating. What I love about vision therapy is its intrinsic holistic nature. How Dr. T held Stella’s hand and escorted her in, and noticed Stella’s toe-walking upon meeting her. How Bethanie notes even slight changes in Stella’s behavior or demeanor during exercises. How Stella’s vision is not evaluated in a vacuum, detached from her personhood and day-to-day reality. I feel that many areas of medicine, not just ophthalmology, could learn a great deal from this model of care.

Back to Children’s. About thirty-nine people were involved in the eye exam process, so I’m not sure I’ll recall exactly how it went down, but I’ll do my best. I’m going to go ahead and break it down because while mind-meltingly boring to many, it could be helpful to other parents and maybe a practitioner or two. I hope so.

Stella underwent a series of exams, then eye drops to dilate her eyes, then another series of exams. And woven in with the charts and cards and gazing at robotic puppies through many lenses was a series of contradictory statements and findings that I found confusing. At the same time, I did note an effort by the Children’s ophthalmology team to be respectful and thorough. All of that considered, I’m not sure we’ll be going back. I may consult with another ophthalmologist, to at least see how the experience and approach differs.

The initial examiner/assistant declared equal vision in Stella’s eyes. Yay! At 20/40. Boo? This supposedly age-appropriate acuity represented a decrease in her right eye, as it had been 20/30 in her previous ophthalmology exam. This person conducted both the first run at the standard eye chart testing, wherein Stella calls out the pictures/symbols she sees, and teller cards screening. During the latter, Stella saw the lines on all the cards presented, with both eyes! That has to mean something great, doesn’t it? Stella even pointed at the lines, instead of just looking at them. Seemed like she nailed it, but what do I know? Very little, it seems.

In the very exciting component of stereoscopy testing, as it reflects binocular vision or lack thereof, Stella showed real improvement! She not only tried to grasp the fly’s wings, as always, but she saw all three 3D characters on lines A, B, and C. Previously, she’d only indicated seeing the character pop out on line A! I felt like this was a big deal, but the moment felt anti-climactic for some reason. Maybe because there was no reaction from the woman doing the exam so there was no feedback in that moment about the improvement. I wanted a parade! At least some balloons and champagne. Step it up, Children’s!

Then the friendly orthoptist, like a breath of familiar fresh air, breezed in and gushed over Stella’s super adorableness. As I recall her doing at past appointments, she checked and re-checked Stella’s acuity–with particular interest this time, after seeing that it had supposedly changed. She decisively measured acuity of 20/30 for the right and 20/40 for the left, as in all prior ophthalmology appointments. Stella just couldn’t quite get the symbol presented for 20/30 with her left eye, but I really thought she whispered it once out of the three or so attempts. This woman was in tune with Stella’s history and status. She cheered the fact that Stella’s glasses still keep her eyes perfectly aligned at near and far. Because that is big and not to be overlooked! She put a negative lens in front of Stella’s glasses lenses, and discovered that while Stella did pretty well, her alignment did suffer a bit with the lower prescription. So I knew then that Stella’s prescription would probably not be decreasing. A bit disappointing, but not a big deal. In any case, it was reassuring to have someone be extra thoughtful and careful. As always, this orthoptist was delightful, and seemed genuinely invested and interested.

While I can’t guarantee the accuracy of my recollection of the order of events, I believe the eye drops were next. At bedtime the night before, and in the morning prior to our departure, I informed Stella about what was going to happen at the eye doctor–including the tingly eye drops. I explained roughly how and why events would unfold. Maybe that helped, because while she squirmed a bit, there was no yelling, no panic, no crying. Amazing. In short, Stella rocked the entire situation like a rock star who ROCKS. It impressed me, and everyone else, that she handled everything so calmly. Then she cruised through a 30-minute wait while half-watching Dora, impersonating a monkey while climbing chairs, and cracker snacking while making me nervous about insidious hospital germs being transferred into her mouth along with each bite.

Then the moment of truth, I thought. Nope! Another guy came in and looked in Stella’s eyes with that little handheld light, various lenses, and the contraption that looks like an old timey miner helmet combined with a futuristic mind reading device. At one point, he said, “Perfect!” What was perfect? Her posture? Her left cornea? This is how I think, people. Yet I held it in. I didn’t question him, mainly because Stella was shy and uneasy around the dude. So I was focused on her.

Okay, finally! The ophthalmologist came in, on a throne carried by an elephant, and warmly greeted us. She was accompanied by another dude. A student? A new resident? Not sure, but this was clearly a teaching situation. Stella eyed him with suspicion. The doctor casually and quickly delivered what could be considered an “intro,” saying that Stella looks to be doing quite well but needs a prescription change. Cool. I didn’t think too much of it as she proceeded to review the notes a bit and take her own measurements of Stella’s eyeballs. Not long into this consultation, another of the several small but confidence-undermining errors of the morning unfolded. She noted that Stella’s acuity was now equal at 20/40 in both eyes. I was all, “It is? Actually, I’ve heard both–that they’re equal and that they’re not.” So she looked closer at her folder and realized the mistake. This is the problem, I think, with Children’s “team medicine.” On one hand it may be reassuring to have many minds and specialists working on the issue of Stella’s vision, but as with her hospital stay at Children’s for GI and feeding issues, it seems to create confusion as information does not consistently track smoothly from one person to the next, to the next, to the next. Which makes me feel hyper-vigilant, as it’s up to me to prevent disaster. Fun!

This next bit almost seems impossible, so I’m thinking I must have actually misheard her. But here’s what I recall. On the topic of Stella’s unequal but close acuity, she said that everyone has a dominant eye, that many doctors don’t consider it actual amblyopia until there’s a two-line difference, and that Stella’s eyes seem to be working together well, but we may want to consider patching. Huh? We’ve been patching for at least nine months. I cut her off as she continued to say, “We are patching,  two hours a day.” She said something like, “Well, two to three hours of patching a day certainly won’t hurt…” I hope not, because you prescribed it, lady. I really am wondering if my hyper-vigilant self simply cut her off too soon and created this whole mess–so put a big mental asterisk there. She then said that it was up to me, but that we could take a break from patching and see where Stella’s acuity lands in four months, at her next appointment.

This when the doctor acknowledged my point of view as a parent. Nice! She said she knew that patching can be tough and that if it was agonizing, a break might be a really good thing for both of us. With a laugh, she said sometimes parents need patching breaks more than their kids, and besides, she was confident Stella would be just fine even if–worst case–her acuity went down slightly in that time, because Stella is still young and has more time for effective patching. I think I forced a laugh, but I really did like her nod to parental sanity. She also pointed out that if I thought it would be hard to get Stella patching again after the break, I could just continue our two-hour-a-day regimen and we’ll reassess next time. On the surface, these statements seemed 100% delightful. But then they sunk in and I saw their underbelly: a mentality that embraces years and years of unpleasant patching as the sole treatment for amblyopia.

When it comes to the actual examining and measuring, I get the sense that this doctor is very skilled. Efficient, calm, and precise. She asked Stella if she’d be willing to sit out in the waiting room and teach other kids how to cooperate during an exam. I was already very proud of Stella and this comment made me smile. Stella for the win!

At the very end of this saga of an appointment, I didn’t quite follow the reasoning about the prescription. I hadn’t eaten anything. My blood sugar was low while vigilance remained high. Maybe I shouldn’t feel such an impulse to completely understand all the makings of the figures in that glasses prescription grid. Maybe I shouldn’t be noting every comment everyone makes as they do the exams and comparing and slicing and dicing them. Like when the student guy took a turn looking in Stella’s eyes and the doctor told him he’d notice a “duller” something or other, and that was just a downer to hear. Maybe I should just trust that this is the right prescription and no mistakes have been made, no key bits of information overlooked. But dude! It’s not exactly smooth sailing over there! And when it came to the prescription I had a pretty sizable though fleeting misunderstanding.

After measuring, she said she was going to decrease the prescription to allow Stella’s eyes to do some of their own accommodation, which might help us reduce the prescription as she gets older. Surprised, I was all, “Wow, that’s GREAT!” Then she handed me the new prescription, and I stuttered, sadly, “B-but, this looks higher than her c-current prescription.” And I saw in her eyes recognition of my misinterpretation. She paused to look in Stella’s file to find her previous prescription and said, “Ah, yes, this does represent an increase in her prescription from last April.” Then she explained that she was reducing the prescription as measured TODAY. It makes total sense. But when you present a new prescription to a patient, or her mom, shouldn’t you talk about any change and reassure about or explain that change at least somewhat? My confidence wasn’t exactly 1,000% by then based on the other slip-ups, so I started thinking about the doctor’s and orthoptist’s statements that Stella’s eyes are perfectly aligned in her glasses. If they’re aligned, why does she need new glasses? Isn’t that the point of the glasses? Honestly, by then I’d contradicted, questioned, and corrected the doctor a few times already and didn’t want to keep pushing. It was just getting awkward so I let my anxiety start to take over a bit, and I backed off. But now I wish I’d just said it. I wish I’d expressed that lingering doubt, and resolved the issue for my own benefit. For some reason I protected the doctor from further scrutiny. Why I feel the need to shield surgeons from any cutting remarks is a mystery! (Sorry.) Mainly I protected myself from further cringing–I still judge myself to be overly worried at times, and overbearing. I don’t want to create an antagonistic mood wherein people are more likely to make mistakes or be unreceptive to my questions. But I’m Stella’s advocate! It’s up to me to ask all the questions. It’s my job to make sure she gets the best care. This shouldn’t feel like a heavy, overly complicated task, should it?

We had a vision therapy appointment at 5pm that same day. Yep. Our therapist and I thought her eyes would be back to normal by then. Nope! They were still quite dilated, and I had to wake her up from her nap in order to get there on time. Which, duh, is a recipe for sour Tantrum Soup! I expected a tough session and said so to Bethanie, Stella’s vision therapist. I was so wrong. Stella stepped up and knocked it out of the park. We enjoyed tasty Giddy Cooperation Quiche, or something. Bethanie got another heaping helping of Stella’s growing adaptability, sociability and even her hilarious fake evil laughter during the “red light game” in which Stella and Bethanie had great fun together. A delight to behold. We were on top of the world, I tell you! We were invincible! Remember when a regular session of vision therapy resulted in angry desk-clearing? When the yoked prism goggles created an instant bad mood? No more. She wore them agreeably, base-up and base-down, on a balance beam, popping bubbles, reading the letters corresponding with a little moving light, calling out the color of the arrows on a chart while bouncing on a trampoline, and on and on. She did some impromptu victory laps. She said, “I did it!” several times, with glee. How far we’ve come.

In a perfect world, the ophthalmologist’s exam would’ve shown 20/20 (or 20/30) acuity in both of Stella’s eyes. But it’s not quite so simple. The greater context includes minimized toe-walking, dramatically improved peripheral vision, and clearly enhanced stereoscopy. To me, the results of our sojourn with ophthalmology were affirming, like all of the improvements I’ve seen in Stella’s vision throughout the last nine months.

To conclude, a few things I’m looking forward to: Dr. T’s upcoming optometry evaluation and input. Much needed new glasses for Stella as purple tie-dye duct tape is now holding her specs together. A patch-free summer with my vision therapy champion of the world (toddler weight division).

The Great Peripheral Awakening of 2011

Posted on by amberhj

A few weeks ago,  I noticed a distinct change in Stella’s vision. Bam! It could not have been more obvious if she slapped me across the face and said, “Damn it, mommy woman! My vision is changing! Give me a god damned hug!”

In short, her peripheral vision opened up in dramatic fashion. Last year, when the esotropia hit the amblyopia fan, I would not have even known that Stella’s peripheral vision was limited if not for the input of our developmental optometrist and vision therapist. Our ophthalmologist never made mention of peripheral vision, which is a sizable piece of the pie in terms of how we take in our surroundings. It affects how we feel, not just how we see. Anyway, I suddenly had clear evidence that Stella’s peripheral vision had been turned on or amped up by the yoked prism goggles, or at the very least she became more aware of it and more tuned in to her surroundings.

How did I know? Walks became more stressful for a while. We live in a bustling urban neighborhood. In fact, it’s been declared the dessert capital of Seattle, with quaint cupcake, gelato, ice cream, chocolate, and pie shops all within a couple blocks. Strolls can be highly caloric, though I like to think we break even, what with the ambulatory mode of transport. For a while during this period of visual transition, when we walked along the sidewalk and approached a crosswalk leading to some sort of sweet destination or none in particular, Stella would get very upset. She experienced panic at intersections. At first I didn’t quite get it or its significance, and in my ignorance probably thought, “Yeah, I wish the cupcake place was closer, too! Mommy needs chocolate NOW!” Honestly, her agitation was too high to downplay and her actual reasons became clear quickly. Her anxiety was sparked by cars approaching from the cross street. She reacted as if the cars (moving in our direction on the cross street, so at a perpendicular trajectory, and I should really have my engineer husband proofread this) were coming straight for us. She lacked the common, seemingly natural understanding that vehicles would stop for us if we just waited at the curb. She was downright afraid they would hit us–even if they were a good half a block away. Stella refused to walk all the way up to the curb to wait to cross, she wanted to stay back from the road, so that’s what we did for a while. Until the fear faded away and she found a new “normal.”

Stella simply wasn’t used to being able to see the cars’ motion in her periphery. The difference was clear as day and her reaction was made my heart race. I knew that a sizable shift was taking place. My gut had no doubt that this was a positive development, and that she was simply noticing the previously unnoticeable, but I also felt her visceral fear and desperately sought to soothe and reassure her. The intersections that never bothered Stella before, with the usual rhythm of cars coming and going, were now somehow very different to her. This was around the time that I noticed, during a vision therapy session with the yoked prism goggles, that she was locating letters on the floor without looking directly at them.

As she has time and time again throughout her 2.75 years, Stella adjusted. She learned that this is the way streets and intersections and crossings work. That cars approach but are not actually barreling for us. It wasn’t long before she incorporated this new broader, more inclusive view as normal. Stella now seems less afraid of most things, in fact. She’s been more and more social and talkative, and increasingly adaptable in general. Her babysitter recently marveled at the fact that most of Stella’s talking to her had been echoing, simply repeating what she’d said, but now Stella initiates and offers her own thoughts. The echoing is drastically reduced if not gone for the most part. We recently had company and Stella brought item after item to Cody’s best friend Tom, engaging him excitedly and chatting away. This is new behavior. Part of it may be simple advancements that come with age, but I think just as much is related to her vision. I have other observations to back this up, like her weeks-long fear of playground structures and other kids on said structures. That’s gone, too, and its disappearance coincided with what I’m calling, as you can no doubt guess having read my witty subject line, “The Great Peripheral Awakening of 2011.” If only the United States’ financial industry could follow suit.

Life is less stressful and more secure when you are aware of your surroundings, I imagine. To me, nothing feels better than seeing her happy. To witness her blooming into this more engaging, engaged, often fearless kid.

Like many people with esotropia, her vision has been focused centrally–like tunnel vision to some degree. We’ve done vision therapy for almost nine months now, and have devoted many recent weeks to use of the yoked prism goggles (20 minutes a day at home, with 10 of those base up and 10 base down) to open up her field of vision. Vision therapy, including our goggle time, will likely end in a few weeks. This Friday, Stella will have an exam with our opthalmologist, and a couple weeks later we’ll head in to Alderwood Vision Therapy see our developmental optometrist, Dr. T, for a progress evaluation. This is a crossroads. I’m still nervous about her amblyopia, and about whether her prescription will increase. But I’ve seen real progress that can’t be denied, including the minimizing of her toe-walking. I’ve been amazed on a weekly basis by the thoughtful, individualized approach and powerful yet nuanced, seemingly subtle but life-changing, results of vision therapy.

It’s been one hell of an eye-opening journey! (You didn’t think I’d given up terrible vision-related puns, did you?) When I look back, I’ve been most struck by my sharp yet sweet two-year-old Stella and her ability to adapt to a new way of seeing the world, a place that to her now feels wider and more welcoming.

Artist, and goggles, at work

Posted on by amberhj

Artist at work, wearing yoked prism goggles

Vision therapy? Art therapy? Either way, we're winning.

Stella’s Easter basket included a sweet set of watercolors and accompanying pad of paper. She’s used them every day so far, at her request, and as it so engages her, I’ve been putting the goggles on her while she paints. We’re starting to branch out, no longer limited to the brush that was included with the set. Fingers, Q-tips, and other brushes and random household items are coming into creative play. Relatedly, today’s “watercolor goggle time” turned into “manic sprinting while tossing cotton balls all over the place goggle time.”

Currently, Stella’s only at-home vision therapy exercise is to wear the yoked prism goggles, base-down, for a minimum of 20-30 minutes per day. It’s going very well! The first couple days wearing them at home, she took them off after five minutes and I didn’t push her to do more. I figured she’d adjust, and she did. Voila! Less than a week later, 20 to 30 minutes (or even a bit more) are flying by and I don’t have to work so hard to keep her busy and entertained during goggle time. Plus, I could fill a gallery with her prism-goggle-influenced masterpieces! Naturally, I’m accepting bids starting at $500. GO!

Nest

When asked about her inspiration, Stella said, "I made a nest for birdies!" Sure, it's a nest, but the underlying narrative taps into Americans' current longing for security and "re-connection" with nature. Brilliant work.

Untitled. Stella's first foray into watercolors, on Easter Sunday. On the surface, it's a tribute to the joys of spring and candy, but underneath, there's a deeply conflicted expression of the promise and peril of modern childhood. Stunning.

Quick VT note: TLC for Stella’s transitioning toes.

Posted on by amberhj

Stella’s toes are starting to relax. The yoked prism goggles continue to benefit her, but it’s created a small, surprising side effect. Turns out, her toes have been clenched so consistently for so long that the skin is actually having to stretch out as her toes extend outward. There are now raw, sometimes bloody cracks on the bottom of her toes in the incredibly deep creases that formed where her toes folded and curled over. Her right foot is more affected and cracked. I’ve actually noticed that when walking, her right foot is more consistently flat than her left, which has just a slight bit more reliance on her toes still, though both feet have clearly improved. Stella’s brain is figuring it all out, and it’s fascinating to watch. Well, almost as fascinating as watching her attempt to unwrap and quickly devour a foil-wrapped chocolate chick this morning. Only Kevin Garnett of my beloved Celtics can match that level of intensity.

I’m making sure antibiotic ointment is liberally applied and socks are worn when she is up and about. With those two pieces in place, she’s fine. Otherwise, it’s painful and she limps over to tell me her feet hurt. I apply a thick layer of “booboo cream,” usually tickling her in the process. Then all is well.

Those little piggies have been tasked with gripping the ground tightly in an effort to keep Stella up high. As previously explained, she was positioning her body in a way that made sense for her visual field. The goggles are helping re-wire her brain and create a more accurate map of her environment and her relation to it, spatially. Ten tiny toes have carried much of her weight for most of her walking life! Through vision therapy, her toe-walking is dissipating. When she runs I hear her feet slap the sidewalk. It makes me smile. I’m thinking about making it my ringtone.

And hooray! We currently have a pair of the goggles checked out for use at home, and she’s doing very well as she ramps up to wearing them in the base-down position for 20-30 minutes a day, minimum. She doesn’t mind them so much but still prefers close-up activities for now. Like unwrapping rare bits of candy or making play-dough Easter cookies.

For now, I await the healing of those little wounds as Stella’s toes delegate responsibilities to the rest of her foot. I’m constantly noting positive changes in Stella, including a heightened awareness of her periphery, which I’ll talk about here soon. But most of all, I relish the small but big changes that unfold as her vision therapy enters what looks to be its final phase.

Happy Easter, everyone! I wish you jelly beans in only your favorite flavors, and happy relaxation from head to toe.

Re-entering the ring: Stella the Spella!

Posted on by amberhj

Just a few small updates for now.

Stella can spell her name and delights in doing so. I’m extremely proud of her, as you can imagine. I suspect she’ll start spelling other words soon. She’s making a habit of quickly rattling off the letters in the words she sees. I have to say that it’s encouraging, vision-wise, to hear her say the letters one after the other, so smoothly and accurately. Maybe I’m over-thinking it, but I’ll take it. Bam!

She’s turning into my little kitchen helper. Tonight she had cheese-sprinkling and cauliflower-tossing duties. She kept moving her stool from one station to the other, requesting to check on the dish in the oven, and nibbling leftover chopped onion, shredded cheese and avocado–oh and a slice of lemon. She’s proud of herself and the results, more invested in the meal, and I have less to clean up. Bingo!

Stella is a gymnast now. We go once a week to a nearby gymnastics academy, and many of the exercises we do there are identical to ones recommended by our vision therapist (like animal walks, donkey kicks, etc.). Of course it doesn’t feel like therapy. It’s just fun! And Stella is quite fearless and adept! She can walk the entire length of the balance beam by herself with her arms straight out, do somersaults down ramps, hop like a bunny down the bouncy track, launch herself into the foam pit, and pull her feet up under the bar when hanging from it. She’s so strong. Her enthusiasm overflows.

She’s owning her current at-home vision therapy, which includes use of flippers for near work (hand-eye coordination stuff) and red and green overlays side by side on the TV with red/green glasses (five minutes each way). Stella breezes through these. We work in vestibular activities here and there, too. My current goal is to purchase a toddler-sized pair of the yoked prism goggles. Having access to them only once a week is creating too much stress and pressure. Getting our own pair is the solution to the currently upsetting and unhealthy situation. Despite my efforts to stay neutral  during goggle time, I’m sure she senses my expectation and feels pressured–it’s time to take that away. It’s time to be reasonable and not expect her to tolerate them for a large chunk of time once a week and allow ourselves to break it down into more comfortable, age-appropriate pieces.

Tomorrow we return to vision therapy, in a new afternoon time slot after an illness-induced hiatus. I’m bringing a document I’ve typed up that outlines suggestions for making vision therapy more beneficial and less stressful for Stella, including the need to purchase our own pair of goggles. I know Stella best, after all. And I want to make sure I’ve done everything I can to make these sessions work for her, instead of producing such angst (for both of us). The new non-morning time should help, but there are more creative, thoughtful strategies we can implement, or at least try. I’ll share the ones that work, along with overdue descriptions of how creative solutions have helped make home-based exercises successful. You’d laugh if you peeked in our window and saw the silly things I do in the name of vision therapy. You’d be amazed if you could see how far Stella has come with specific abilities, how resilient she is, and how wonderfully willing she usually is when it comes time to play her “eye games.” And you’d be shocked if you could witness how such small adjustments can make all the difference!

There’s always hope if you ask me. We may get down after a rough appointment, but we never give up.

 

 

Sucker punched!

Posted on by amberhj

Well, today’s vision therapy could not have gone much worse.

She refused to wear the prism goggles for more than a minute or two at at time. Not only did she kick, throw and scream, she attempted to toss all the folders and paperwork off of Bethanie’s desk with several angry sweeps of her little but surprisingly strong arm. I had to fight back tears most of the time. I enforced a much needed time-out and we ended the session early.

All is not lost, certainly. We realized that on the days we’ve done vision therapy in the afternoons, we make more progress with Stella. Having to wake her up, rush her through her morning routine and have her start these exercises after only an hour of wakefulness seems to be problematic. Next week, we have an afternoon appointment.

Today, I’m getting myself a treat. Today, I’m doing what I want to do and Stella is merely coming along for the ride. I need to focus on myself right now, because the hope and energy I put into her may be too much at times. Like today. I was so crushed. I know it’s definitely not true, but it feels like she just crapped on my head, for kicks.

In closing, for a future in which my dear daughter reading this: I love you so much Stella, even when you were a ruthless tornado in toddler form. That’s why days like today are so hard.

How vision therapy is saving Stella’s toes, and then some.

Posted on by amberhj

The hardest working toes in the business (of running around)

The hardest working toes in the business (of running around)

Stella is a toe-walker.

She’s been tiptoeing around for as long as I can remember. Prancing, really. Her gait has been so bouncy and adorable, so evocative of a little ballerina, that her physical effervescence has charmed even sour onlookers. I’ve been kindling a small flame of worry about her overworked and constantly clenched toes, despite an inner voice that told me to stop looking for trouble where there was none.

Early last year, I met up with Stella’s occupational therapist–the OT who helped Stella overcome her feeding aversion–to check in and discuss ideas for an article about our feeding experiences. I couldn’t help but ask for her expert opinion on Stella’s toe-walking. And just as I’d hoped, she reassured me. She rightly noted that Stella could stand on flat feet, bend her legs and pick something up with ease. Stella walked flat-footed here and there, and when she stood still, it was often on flat feet. Clearly, Stella was not incapable of walking flat-footed. Besides, she was less than 18 months old at that time, and toe-walking is relatively common in such little ones. In my heart and soul, I agreed with this assessment. I mean, really, do we have to make every little kid quirk into a problem to be fixed? It made me angry to think that something so seemingly age-appropriate and  harmless about Stella could be pathologized. Enough with the medicalization of childhood already! As my dad used to bellow, in Braveheart fashion complete with a raised fist before leaving to pick up our Friday night pizza, “Who is with me?!” So I stopped worrying about it. For a while.

Fast forward a few dizzying toddler months. Sail past the great eye-crossing incident of 2010 and whiz by the diagnoses of strabismus/accommodative esotropia, hyeropia, anisometropia and amblyopia. Jump to Stella’s first appointment with her developmental optometrist, Dr. Torgerson (“Dr. T”) of Alderwood Vision Therapy Center. (‘Bout time I named her–we’re very lucky.) Upon meeting Stella, having taken her hand in the waiting room and led her to the exam room, Dr. T noticed that Stella walks on her toes. (Note: Stella’s ophthalmologist never noticed, or at the very least never mentioned, this.) During that consultation, Dr. T placed yoked prism goggles over Stella’s regular specs. Stella’s toe-walking was completely eliminated. She walked flat, instantly. No. Joke. Stella seemed to be looking at everything with new eyes. Dr. T seemed interested but unsurprised and made a note that this was worth exploring. I was still a bit defensive, a bit reluctant. I tried to reason around it. As in, “Well, she was just walking very slowly and cautiously due to the weird distortion of the prisms and that’s probably why she wasn’t as bouncy or tiptoe-y.” Of course, while my focus at that time was beginning a course of vision therapy to address the aforementioned diagnoses, I did at least make a mental note about the prisms’ elimination of her toe-walking. In truth, I pushed it aside, not wanting to create another problem. Not wanting to accept that in addition to her feeding and vision challenges, Stella’s toe-walking was “an issue.”

Turns out that the toe-walking wasn’t so much a seperate issue as an unexpected (to me) extension of her visual one(s). Since that fateful day, Stella has worn the prism goggles many times during vision therapy sessions. After the first time Stella wore them under the guidance of our vision therapist, Bethanie, I was sold on their effect. There was no denying it! I was struck not only by how her gait instantly changed, but also her demeanor. With the yoked prism goggles (the stronger the prism, the more pronounced the effect), she not only walks “flat” but also seems more calm and able to focus. The stronger ones are pretty overwhelming, however, so we’ve scaled back to some less powerful ones with plans to work in the original stronger pair soon. It’s a mind-blowing work in progress, if you will.

Stella's first run with the uber nerd glasses--I mean, yoked prism goggles

Stella's first run with the uber nerd glasses--I mean, yoked prism goggles

In essence, yoked prism goggles help re-wire the brain, forcing it to re-map spatial relations. Every time she wears them, they help her gauge the world more accurately. The repercussions are stunning. This isn’t just addressing Stella’s vision. Changes are happening in her brain, in how she perceives the world and her place in it. And that dramatically affects how she feels and behaves.

When Stella leaves those vision therapy sessions (wherein she wears the prism goggle, of any strength, really), she is more outgoing. She is open. Allow me to explain why that fact is so incredibly huge. I don’t label Stella as shy. I don’t want to presume, at age two, that “shy” is who she is and I don’t want to convince her that it is. But I will say that she is often quite tentative. We do see flashes of wonderful social interaction and friendliness–she’s very attached to her best friend, Cooper–so I know her social self is in there. But most often, she shrinks back under even the friendliest gaze from a stranger, or is daunted by mere proximity to people.

On the playground, Stella’s crowd avoidance is overt. She rarely uses structures if anyone else is there already. If someone playful soul is on or near the slide, instead of waiting for a turn or walking up with the understanding that they’ll be down soon, she avoids it completely. If people step aside and watch her, with a smile and friendly encouragement or quiet patience, she refuses to go down. She’s protective of herself. At music class, when the basket of instruments is placed in the center of the room, every other child in the room just flat-out goes for it. They make a beeline for the basket, and grab what they want, carefree! Stella immediately takes a step or two forward, only to halt as everyone rushes by. She waits for a big opening instead of squeezing in willy-nilly like the rest. Part of me has long wanted to push her into the fray. To tell her that she’s just as entitled and doesn’t have to wait for everyone else to take first pick. I just chime in with lighthearted encouragement, and a hand on her back.

Qualities like patience and shyness seem almost beside the point when I think about her vision, and the effect of the yoked prism goggles. I’m now convinced that such reserved, cautious behavior is due, at least in part, to the effect of her visual field–not just her innate personality. Crowded places (especially new ones) and chaotic situations can be so, so anxiety-producing for Stella. Thankfully, at long last, I now believe I understand why. She has trouble gauging her place in relation to a crowd. Per Dr. T and our vision therapist, Stella’s peripheral vision is likely limited, creating a type of tunnel vision that makes life more stressful. She’s always on guard because she’s learned that objects in her proverbial mirror are closer than they appear. She can’t quite trust her visual system in those situations. How startling that would be! And how draining and frustrating to be startled so often. So she takes extra precautions. Her separation anxiety, viewed through this lens of understanding, makes much more sense to me now. I’m her anchor amid the unfamiliar and unstable.

The same visual issues that cause this sort of defensiveness also give rise to her toe-walking. It’s not so much a problem as a solution Stella has come up with to better orient herself in the world as she perceives it. I get it now–the details may be hazy, but I am starting to understand a bit better how Stella sees, and how it affects her way of being.

Back to those yoked prism goggles! Despite some difficulty in getting her to wear them for extended periods, they seem to somehow relax her, and the results are stunning. After her last vision therapy session, during which the goggles are now a prominent therapeutic fixture, Stella ran out into the waiting room and strode right up to a much older child, looking him in the eye and beaming! I was elated. A few sessions ago, in the waiting area following one of her first (“full-strength”) prism goggle trials in vision therapy, Stella started chatting with another family. The mother was gently encouraging her children to put away the toys, and put on their coats, because “we’re going home.” Stella walked up to her, looked her in the eye and said, “We’re going home too! I’m going home!” She kept engaging them, over and over, as they walked out. They smiled and acknowledged her, probably regarding it as typical little kid behavior, but to me? I had to hold back emotion. On yet another such occasion, in between those two examples, Stella walked into the play area of the waiting room after goggle-clad vision therapy, waltzed up to the small play table which was closely encircled by older and taller children, and she confidently and without hesitation joined them. She nudged right in next to a 6 or 7 year old boy. She looked at him, started talking, and reached for the toys on the small table as the others played as well. She was unphased. I was awed. Deeply heartened. That was Stella, freed! That was Stella, no longer feeling caged in by her vision. Her world had opened up. She seemed lighter, less stressed, and more engaged with everyone around her. She carried an innate sense of security. I want her to feel that secure all the time (hek, I wish I did!), or at least more often. My hope is that continued use of the yoked prism goggles will get her there–in tandem with our other vision therapy efforts.

Already, Stella’s toe-walking is fading away. She isn’t so high up on her toes, and she uses her heels more often when getting around. Also! She used to flap her arms, especially when happy and excited, but we just realized that she hasn’t done that in a long, long time! Bear with me: Based on limited but fascinating reading, I’ve gathered that autistic children and others with tunnel vision (or other related visual issues in which ambient vision and/or depth perception are compromised) use arm flapping and toe-walking in part to help gauge their place in relation to their environment. Stella is not autistic, but there are clear parallels between Stella’s vision challenges, and even her behavior in specific situations, and those of autistic kids. Many of them would greatly benefit (not just visually but socially and emotionally and in all kinds of ways) from vision therapy yet never get exposure to it. Hopefully that’s changing as awareness of vision therapy grows. So much needless suffering could be eliminated or at least significantly reduced. I am the wanna-be Gandhi of vision therapy.

My view of vision therapy has greatly expanded over the months, along with Stella’s vision therapy regimen. At first, back in the dark ages, I viewed this work as the remedy for Stella’s amblyopia and probable accompanying deficit of stereoscopy. Plain and simple, just like the initial exercises: catching balloons, stringing beads onto pipe cleaners, and the like. Now, her exercises are centered around yoked prism goggles and vestibular activities. She’s using her whole body. Her brain is re-configuring the world. This isn’t an effort to “fix Stella’s eyes.” It’s a campaign addressing the myriad of ways her vision affects her physical and psychological wellbeing. And mine. Our stress reverberates between us, and can be overwhelming at times. I try to take a tip from Stella and just step back and be patient as we work through this, but sometimes I fail. It’s okay. We’re both doing the best we can. I get cupcakes for myself too often, but that’s a small and delicious price to pay.

The goal as I now see it? Stella won’t feel the need to tiptoe through life–literally or figuratively.