Stella's eyes

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.

Fashion visionary, so to speak

Posted on by amberhj

Right before Stella began wearing her fabulous French glasses, we purchased this (currently sold out) onesie from Threadless:

The "I Love Fairy Tales" onesie from Threadless

This is the "I Love Fairy Tales" design from Threadless. If you look closely, you'll notice small wings coming out of the bespectacled frog's mouth, and a tiny wand on the ground in front of him. Look even closer you can see the yogurt that Stella had just devoured.

Soon after Stella started patching, I found this beauty at Hanna Andersson (we got the onesie but they make a shirt version, too):

Pirate Girl Onesie from Hanna Andersson

Stella LOVES this thing. She keeps pointing at the skull and crossbones (complete with a pink bow) while saying, "Pirate girl! Wearing heart eye patch!" Which sums it up quite nicely.

Pirate girl onesie

Okay I just had to throw this shot in, too. I just like the pose. She was pretty delighted about her look. The onesie, rain boots, and black leggings totally WORK. On her. I could never pull this off.

Who knew visual challenges would wind up being such huge fashion inspiration? But then again, as I always say, “When life gives you lemons, make them the palette for a zesty, cheerful new wardrobe.”

Note: Even though we bought a Canon SLR, it’s somehow often dead or too far away when impromptu photo opportunities strike. So as you can probably tell, these are all un-fancified iPhone shots–no effects or anything added because I’m way behind the times in that particular area, among others. Ah, well, she’s cute through any lens.

Takeaways from Dr. Susan Barry’s Web Interview (School Crossings: How the System Lets Down Children with Vision Problems)

Posted on by amberhj

First off, I have to admit that I entered the web meeting eight to nine minutes late. This will be the opposite of shocking to anyone who knows me.

I was infuriated! I’d been anticipating this thing to a pathetic degree and just finished Dr. Susan Barry’s Fixing My Gaze, a godsend of a book for parents of children with strabismus. (Click here to listen to the NPR story about Sue.) Unbelievably, I was at my computer two minutes before the start time. And only then did I realize I had to download frigging webinar software, and this computer hates me and therefore refused to install it despite several admirable attempts. So instead of thinking about it for two seconds, I called Cody, who was on a walk with Stella so that I could have peace and quiet during the webinar. (Is “webinar” really a word? If so, it shouldn’t be. I hate it.) He said, with no annoyance in his voice whatsoever, “Use the laptop in our bedroom.” So I literally sprinted into our clothes-strewn cave of a room and logged on to an ancient IBM ThinkPad. Thank God it worked, or I would’ve thrown lamps and other breakable items in frustration. Pile of clothing, at least.

Anywho. My coverage, as promised…

By the time I got to the party, hosted by the College of Optometrists in Vision Development (COVD), Sue (I guess I’ll be cozy and call her that) was recounting some of the background laid out in her book. She had 20/20 vision in both eyes. So, in the standard vision tests they give in school, where you read a chart of letters (20 feet away) with one eye covered and then the other, her binocular vision problem went completely undetected. It’s not just because one eye was covered so as to avoid revealing the inability of her eyes to work together, but like Stella, her vision was pretty much fine from far away (say, 20 feet), and not so sharp within a few feet. Because the vision test didn’t reveal the source of her low test scores, she was labeled as a “dim bulb.” Literally. Teachers told her parents to accept the fact that their daughter had low intelligence.  Sue, neurobiologist and author Sue Barry, Ph.D., was placed in a “special needs” class with an assortment of children with widely varying impairments and diagnoses. Side note: Sue’s best friend was physically impaired by polio, though she said it was quite obvious his intellect was just fine. Sue never raised her hand to answer questions because she had no confidence in herself. Thankfully, her mother never, ever doubted her high intelligence, and Sue saw and felt that.

Of course, Sue’s mother did more than merely believe in her. She took action that contributed directly to Sue’s later success. She read to and with Sue constantly. More than that, whenever young Sue expressed excitement about or interest in any topic, she would come home to find that her mother had placed a perfectly chosen book about that very subject on her bed. A little surprise, an eagerly opened treasure. Reading was fun.

Sue explained why her mother’s efforts were so powerful. If a person anticipates a reward for an activity, brain activity is generated that changes synapses. By making reading to rewarding and enjoyable, Sue’s mother helped shape her brain! Despite the fact that her binocular vision problem made reading much more difficult than for most, she became a slow but competent reader. She found joy in it, which propelled her through the visual challenges. I wish I could give Sue’s mom a huge hug, and perhaps a parade. Honestly, read Sue’s book. That woman went to bat for her daughter. Much respect.

I have to add that Sue and the moderator further discussed the topic of how to encourage reading in kids who, as Sue did as a child, find it uncomfortable and difficult. For most kids with vision problems that make reading taxing (but not impossible), total avoidance of reading and reliance on books on tape isn’t the answer. They suggested that parents and teachers simply be patient, and take it slow. Start with less challenging material until their confidence and endurance increases. Provide breaks during reading. Small efforts like taking turns reading paragraphs with your child can make a huge difference.

After recapping how her childhood was affected by her vision problem, Sue delved into the story of a boy named Eric (also shared in Sue’s book). For a long time, no one knew Eric had a vision problem. Eric’s eyes looked straight. He could see well from a distance. Bu his vision was poor when looking at things close-up, which made schoolwork frustrating and aversive. As a result, Eric was a poor-performing and distractible student who was diagnosed with and medicated for ADHD! This unfortunate mistake wasn’t corrected until they happened to visit a clinic (for kids with ADHD) that offered binocular vision tests. Only then did they realize Eric’s true problem. According to Sue, following vision therapy, Eric has gone on to become one of the top students in his college class.

The moderator helpfully asked Sue to name any key studies or resources that she could suggest to parents. She cited two:

Reading Strategies in Mild to Moderate Strabismic Ambylopia: An Eye Movement Investigation (published just this year). Key finding: These kids have longer fixations and less accurate saccades.

Randomized Clinical Trial of Treatments for Convergence Insufficiency in Children (a study by the National Eye Institute). This trial resulted in recommendation of a 12-week course of office- and home-based vision therapy.

Note: Sue also suggested that parents visit COVD.org to check out their “Research and White Papers” and reminded us that the chapter notes in her book are full of references to the wealth of research and studies cited.

Because the point of this “webinar” was to empower parents and educators to better support children with vision problems, the moderator (again, very helpfully) asked Sue what activities she found most enjoyable as a child. My ears perked up. This is about building confidence, and focusing on strengths rather than worrying about weaknesses! But when I heard what she said next, as she began her answer, I got a tiny bit sad. Because she explained that ball sports were difficult and not very enjoyable at all, as they involved demanding eye tracking which requires coordination of the two eyes. She just couldn’t follow the ball, puck or other fast-moving object well enough. So, while it makes no sense and we really don’t know what Stella’s vision will be like or if she’ll even be interested in sports, I got a little misty. Maybe Stella won’t be able to play basketball. Or softball or tennis. Maybe she won’t get the same joy out of the sports that sustained me through middle and high school. (Sorry for the tangent.)

BUT. Sue said that less visually demanding sports like swimming and running (and I’ve heard ice skating is also a favorite of strabismic kids) were very enjoyable to her. In fact, she may’ve had an advantage. In Fixing My Gaze, Sue gives many examples of how the brain compensates for challenges in one area by building up abilities in other areas. That’s basically my lame-ass explanation of neuroplasiticity. In cases of injury or disability, the brain adapts to help us figure out new ways of doing things. In her book, Sue describes a key realization  during a vacation to Hawaii–she was far better at finding the way back to their accommodations at night, though a dark and winding path, than the rest of her family. She couldn’t rely as much on sight, and other senses were filling in the gaps (thanks, neuroplasticity!). Her mind seemed to note how her body moved and felt as it moved down the trail, and she was able to navigate easily and intuitively while her better sighted companions were lost.

Driving a car down the street was a whole different story, however. She was a terribly slow and unsure driver who actually designed her entire life around avoiding the activity. That was her prime motivation for beginning vision therapy–not a belief that she’d be able to see in 3D after 48 years of living in a flat world. After all, she’d been told that after early childhood, this type of correction was simply impossible.

Sue admitted that she often receives desperate emails from people with vision problems. They plead for help in figuring out a way to improve their vision, as past efforts have failed. Wisely, she pointed out that this desperation is a sure indicator that their current doctor is not listening and responding to their concerns. She urges people who feel unsupported and hopeless to find a new doctor right away. An easy way to find one who specializes in vision therapy is to go to COVD.org and enter your zip code in the upper right corner under “Locate a Doctor.” Only a real expert who specializes in binocular vision can help. In other words, you need a developmental optometrist, like the one we were lucky to find for Stella and through whom I found out about this interview with Sue. Hooray!

In the Q & A period at the end of the session, a listener asked if vision could regress following vision therapy. Sue paused a bit, and explained that beginning at age 48, she did vision therapy for one year. This entailed one day a week in the office of Dr. Ruggiero, and 30 minutes a day at home. While her vision has retained its dramatic improvement in the years since, she admits that she still does a small amount of vision therapy at home, just to be proactive. Sue noted that while adults can make amazing advances with help from to high levels of motivation and concentration, children are in a much more advantageous position. A child’s mind is more elastic, and her visual system still developing. For a young person, say, six months or so of vision therapy could very well do the trick, their eyes more quickly trained to work together and new mental habits more easily entrenched, quite possibly for life. With, perhaps, a tune-up here and there (in the form of vision therapy) as an adult.

It was clear to me during this meeting that Sue and her buds at the COVD are trying to get the word OUT! Not only in regards to better, earlier detection of vision problems, better support of children who have them, and awareness of the effectiveness of vision therapy, but also about the widespread belief that there is a critical early window for correction of vision problems associated with strabismus. As Sue put it, conservatively, “the ‘early window’ dogma is overstated.” Their shared hope is to educate eye doctors about vision therapy so that they will then “lay out options for their patients.” A booming AMEN to that.

In closing, I’m so glad I listened in. It helped me realize that I need and want more clarity on exactly what Stella is dealing with. I know she has accommodative esotropia, which is a type of strabismus, and has started down the path (at least) to ambylopia, hence the patching. But do anisometropia and convergence insufficiency also apply? They seem to, especially the former, but I’m not sure because no doctor has ever used those terms in regards to her. Knowing how these terms fit with Stella, or not, would help me interpret and apply what I’m learning. I’ll be bothering her eye doctor even more now. Thanks, Sue! Sorry, doc. (Not really.)

I hope my wordy recap was helpful to someone. That said, you can get all of Sue’s important findings and insights in Fixing My Gaze. As the cover attests, it’s a must-read for anyone interested in vision or our amazing, adaptable brains. Seriously, I have a new appreciation for my eyes and the contents of my cranium. Now if only I could make my keys stop disappearing….

Stella’s weighty two-year check-up.

Posted on by amberhj

So Stella had her two-year check-up today. She received two shots, a delicious wooden tongue depressor, fabulous height and weight percentiles, and a small bit of forgivable misinformation. I’m not sure how I will broach the latter with the doctor, but I plan to do that soon.

To kick things off, he asked about Stella’s vision. I explained the high-level details about her glasses prescription, patching, and the plan to do vision therapy in order to get her eyes to work together. He nodded, remarked that his brother had ambylopia, and said that we’ll probably have to patch (and do vision therapy, I suppose) intensively for “a long time.” He said that the pressure is on and at the same time the road long because it’s an eight-year process. After age 8, he explained, there’s nothing you can do for the weak eye because the brain shuts down the associated neurons. Yet I just read in the extremely well-researched Fixing My Gaze that this is actually not the case for most “strabismics.” The idea of a critical early window for correction of ambylopia and other strabismus-related vision issues has been shot down by Dr. Susan Barry (author of Fixing My Gaze) and other experts. Don’t get me wrong–I’m not flipping out about this contrasting bit of medical advice. I know that treating eye issues early is an excellent idea that improves outcomes. I’m not at all upset with the well-meaning doctor but I want to offer him relevant resources so that he may better  guide and give hope to other patients.

Anyway… here are the numbers:

Stella weighs 27 pounds, which puts her between the 50th and 75th percentiles.

She’s 36 inches tall, which lands her at the 95th percentile.

I know it’s completely batshit insane, but both Cody and I got totally verklempt when we heard these numbers. I know. I know. They don’t even really matter. I know. And I also know you’re thinking, “Why? Why on earth would we still have such a reaction? What is WRONG with you people?”

Sigh. Actually, we’ve discovered a new diagnosis in our family and I will touch on that in a future post. It explains so much. But for now, I’ll expound upon our insanity regarding Stella’s weight. Worry lingered because many openly note how lean Stella is, and those comments can really come across the wrong way and reinforce old fears. Because sometimes she’s too busy to eat and we see that through a filter of our distant tube-feeding past rather than viewing it as the normal toddler behavior it is. Because she just went on a long trip to the east coast, started wearing an eye patch, had two pesky gastrointestinal bugs in the past four weeks, and has been known to throw eating pretty much out the window in the face of disruptions. Because despite our intellectual understanding that she has long been healthy and happily eating to fuel perfectly Stella-appropriate growth, we remained a little too vigilant.

To his immense credit, the doctor must have understood the essence of all this. He paused to celebrate her growth, acknowledged all we’d been through when she was an adorable but feeding-averse baby, and then he smiled at me and said, “It’s over.” Those words hit me like a truck. This is a new era. She’s two. She is three freaking feet tall! And she’s fine. Glasses, eye patch, temper, and all. I feel it in my bones now. Worry doesn’t ever go away when you’re a parent, but right now, for the first time perhaps since Stella was born, I know she is okay. We are okay. It’s all okay.

I get it. For real this time. Pinky swear!

Stella at FarFar's in Duxbury

Stella ate her weight (27 pounds) in deliciously high-butterfat ice cream at FarFar's Danish Ice Cream Shop in Duxbury, MA.

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.

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

Posted on by amberhj

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

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

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

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

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

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

Adjusting

Posted on by amberhj

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

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

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

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

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

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