cindy's world

Allie had her eye appointment this morning to check visual acuity with a pediatric optometrist/vision therapy specialist. I wanted someone who specialized in vision therapy with kids to double-check the diagnosis and treatment plan from the Kaiser pediatric ophthalmologist (Dr. S)’s exam last month.

Allie was great; very cooperative (albeit fidgety) and because she was able to identify colors and shapes, Dr. T was able to get a read on the eye chart, altho she didn’t tell us what the exact numbers were. So instead of letters, Allie was making distinctions between square, a house-like pentagon, circle, and something that has the top of a heart but also has the bottom sharply pointed in, sort of like an apple. Allie alternated between calling that shape a “heart” and a “strawberry.”

The diagnosis was pretty much the same. Dr. T found Allie to be a bit far-sighted, and as for the “wandering eye,” said it was intermittent and alternating, meaning Allie sometimes favors the left eye and lets the right eye turn out, and sometimes focuses with the right eye and the left eye then turns out. That, at least, means the brain is receiving signals from both eyes and the neural pathway is there. Dr. T said the brain is just somehow unaware, when Allie’s looking out far or is relaxed and spaced out, that the eyes are turned away from a focal point, but once brought to the brain’s attention, such as by asking Allie to look at something in closer range, Allie is able to immediately bring the eyes back in and focus properly. So the auto-pilot of keeping the eyes forward-pointing is what’s slightly off. Her brain’s supposed to regulate the eyes without her need to consciously do it, and her brain doesn’t do it all the time. Like Dr. S, Dr. T thinks this isn’t an urgent situation and surgery is a distant option.

Dr. T. asked what Dr. S’s treatment plan was, and I said he wanted her to be patched 4 hours a day, alternating eyes between the days. Dr. T said that this is a good plan, and whatever amount of time Allie would allow for this patching will be good, even if it’s 20 minutes a day to begin with. She suggested that since Allie so wants to watch and play with the iPad, to tell her iPad time is okay as long as she’s wearing the patch. I asked wouldn’t this patching split up the cooperative use of the eyes that we want to keep and encourage for proper binocular vision? She said there are multiple theories on this, but that if we don’t want to do patching at this point (I really, really don’t), it’s okay and we can try vision therapy first. She said she’s not promising that SOME patching won’t come later. This is great because Dr. S not only doesn’t do vision therapy for kids this young, but he also said he didn’t think vision therapy would help Allie’s condition. Mr. W and I think it will because we’ve recently increased Allie’s permitted video/iPad time, seeing that Allie’s eyes are always focused and cooperating when she’s watching a video on or playing with the iPad, since she’s so interested in it, and in a week or so, she’s able to bring her focus in much more easily and quickly when she’s having a turn-out moment.

So next step: we’ll make an appointment with the vision therapist at this office to evaluate whether Allie is able to do in-office vision therapy sessions. She needs to be able to follow directions and do what’s needed for 45 minutes, and to give proper feedback so they know what she’s seeing. Dr. T thinks Allie’s sort of borderline in being able to do this; she was impressed that for a kid not even 2, Allie follow directions well and is able to verbalize what shapes, colors and pictures she sees, and was tolerant at wearing glasses that covered each eye in turn and in looking through that big contraption that goes over her face to check her vision.
If Allie is able to do in-office vision therapy, she’ll likely start once a week with “homework” daily that we’ll help her on, such as activities and special movies wearing special glasses. If not, we’ll still get “homework” in vision therapy to start, most likely a red/blue video(s) that she’ll watch wearing red/blue glasses, so that if her eyes diverge during the video, the side of the video with the eye she’s not favoring will turn black, and it’ll give her brain a kick to say, “Oh hey, something’s wrong,” and train her awareness to bring the eye back in.

Because we have Kaiser and it’s not a PPO, this office visit is completely out-of-pocket and cost me $185 today. Each subsequent vision therapy appointment is $100 a pop, which is insanely expensive when you consider that if we go the eyepatch route, it’s less than $10 for a box of adhesive eyepatches, but I’ve gotten so much feedback from adults who were patched as kids who say it did nothing for them except make them miserable, that I’m willing to throw money at a different Plan A first. That’s what rainy day savings are for, right?

Allie’s play in her pretend-kitchen is endlessly fascinating to me. It keeps evolving. Today, she trotted over to her kitchen in the corner of the living room and announced, “Allie make coffee for mama.” She dug around in the accessories box until she found a little tea cup, saying, “There,” as she pulled it out. She grabbed the coffee pot accessory with her free hand and then almost as an afterthought, looked at the teacup again and said, “Need to wash cup.” She put the coffee pot back down and put the cup under the plastic faucet in the sink, turning it around and around directly under the spigot. Then she looked at the cup again as if to inspect its cleanliness, then turned back to the coffee pot and shoved it in a coffeemaker type attachment on her play kitchen counter. She touched her right index finger to a sticker over the top of the “coffeemaker” protrusion, then stood back and just stared at the plastic pot. I was about to ask her why she’s all spaced out, when she suddenly sprang to life again and pulled the coffeepot out. I guess she was waiting for the pretend-coffee to finish dripping into the pot. She then made a pouring motion from the coffeepot into the teacup, then walked the teacup over to me. “Here you go, mama.”
I thanked her and said, “Mmm, Allie’s coffee smells really good!”
She was digging around in the accessories bin again, talking to herself. Suddenly she pulled out a spoon and ran back to me. “Stir stir stir,” she said as she stir stir stirred in my cup. “There! Okay, mama,” she said, and I took my pretend-sip as she watched.
“Mmmm, it’s yummy!” I exclaimed.
“Yeah!” she said, like Duh, of course it’s yummy. I know what I’m doing, mom.

We liked our pumpkin patch photos from 2012 (in San Juan Capistrano) so much that we wanted to take Allie to a pumpkin patch again this year. We walked by the same pumpkin patch/petting farm when we were taking photos with Kari in October, but the place was so crowded that we decided to pass and find a smaller, more intimate pumpkin patch. We tried a couple of small ones, but they were SO small that we just did a walk-through and left, and I didn’t let Allie participate in the bounce house or the inflated obstacle courses where bigger kids were going nuts, for fear she’d be kicked in the face or squished. At one patch, she requested, “Allie go in that house, Allie go in that house,” but I explained that the bounce house was for big kids and Allie could go in those when she’s bigger, maybe next year, but now she’s too small, and she was fine with that. “House for big kids. Allie little girl. NOT little boy. Allie little girl. Allie too small.” And we left. Then I was told by a friend about a larger nice pumpkin farm relatively close to our house, near the Laguna Hills Mall. THAT was a hit. Here are some of those photos, from October 26.

A giant pumpkin, lit up from inside by our little grinny goofball.

There were lots of rides, including Allie’s first pony ride!

And of course the carnival-type vehicle rides.

Allie said this is her favorite ride (“swing-swing!”), not that you can tell by her serious expression.

This isn’t a ride, but it’s a vehicle. She likes to climb on high things, so she’s finally smiling. A little. Okay, at least she’s not frowning.

I know Allie looks totally unimpressed, but she claimed to have had fun. She wanted to go back the next day and talked about it for a few days afterwards. She’s just stoic like her mama when in public. Also, you may notice that in some photos she’s wearing pigtails, and in others, a ponytail. We were there in the morning (pigtails), went home, and after her nap she wanted to go back, so we did (ponytail).

Just for fun, here are some comparison pix between last year and this year.
Sitting on a saddle strapped onto a bale of hay.

Allie using the pumpkin patch to meet boys.

I realized with a start today that I’d missed the marker post about her turning 23 months old. I did post that day, but it was about her use of the word “never” (which she pronounces “nebber”) and about her first meal of true crap. I’ll flesh that out a bit more.

At 23 months, she’s using full sentences. I’m not sure when it started, because it seems she has been creative with her word use for some time now, finding alternative phrases to communicate when we don’t understand what she’s saying, being expressive to make jokes, to reminisce with us, to express her desires, to complain. I’m still surprised at her vocabulary of arbitrary things we didn’t teach her (such as “Look, mama, rockets! Just like Dumbo Ride!” when she saw the spinning Astro Orbitor ride at Disneyland today which, like Dumbo, is comprised of the passenger “car” circling in the air around a fixed center rod), and her use of conjunctions (“Allie and dada and mama in the car, going to Disneyland,” said this morning on our drive) and pluralization (“Mama has pink jacket, too, just like Allie! One, two pink jackets!”).

She loves playing pretend, such as serving us in her play kitchen. She served me “coffee” this evening, making a pouring motion from her coffee pot into a play demitasse and handing the cup to me, warning me, “Careful, mama, is hot, blow-blow,” and I said, “Mama doesn’t drink coffee. Mama drinks tea.” Allie told me, “Pretend.” So I did. I pretended to enjoy the hell out of that cup of hot air. Even when playing with us, she’ll tell me, “Mama, pretend eat Allie’s finger,” and then she’ll stick her index finger in my mouth and laugh as I make gobbling motions and sounds. Over the weekend, she placed her bottle of bath bubbles on the ground and squatted over it, saying, “Allie sit on bubbles.” I said, “That bottle’s to small. You can’t sit on that, you’ll fall.” Allie said, “Allie pretend!” and then proceeded to do exactly that. Then she picked the bottle up and put it back.

Mr. W’s noticed that when Allie gets to play with the iPad or watch videos on our smartphones, which we really try to keep to a minimum, her eyes focus inward. Today, I got her wandering right eye to come right back by putting the phone up to her face and she focused immediately on the screen and her eyes converged. Maybe we’ll have to do more close-up work with her.

Her broken front teeth still don’t seem to bother her. It’s still sad to see her having to put food to the side of her mouth to take a bite, but she doesn’t appear to have any qualms about having to readjust. Feeding her sandwiches is pretty messy, tho.

Allie definitely has an opinion about what she considers attractive. Luckily, I’m always in the “putty” category. Dada is a hit-and-miss. Ha. She prefers her pink shoes to brown shoes. She sometimes asks for pigtails, sometimes refuses them, but mama’s long hair is always “putty.”

Her biggest physical feat lately is her ability to jump. She loves it. She jumps straight up, she jumps forward, she hops in lieu of walk, she jumps off steps and sidewalks. She’s still pretty careful, thankfully, and won’t jump off of anything more than a few inches high without asking to hold our hand first. “Mama, help! Help Allie! Hold Allie’s hand!”

And lastly (that I can think of), she’s still on Team Mommy. Dada was tackling her and tickling her on Saturday, and she scrambled around, tried to get away in between giggles, and managed to get out, “Mama! Help Allie! Mama! Help Allie! No, dada, no!” I went over there to help Allie, and as I pulled Allie (gently) from his grasp, Mr. W let go of Allie and tackled me in the same way. Allie got away and ran a few steps, then stopped to look as I said, “Allie! Help mama! Allie! Help mama!” as Mr. W said, “I got mama! I got mama! Hahahaha!” Allie developed a look of concern and ran right back toward me and said, “No, dada, no! Mama! Allie help mama!” and took my hand and pulled, then placed her own body between me and Mr. W in an effort to break his hold. I was so impressed. I’ll end on that note. 🙂

Mr. W has said before that he’s “always” gotten into trouble for his exaggerations. For saying things like, “You always…”, “You never…” etc. I’ve yelled at him before for that, too. I don’t like being accused of things that aren’t true and 2 times does not an “always” make.

Earlier this evening, we had dinner with Allie at Claim Jumper. Allie spent a good part of the time chanting about wanting to get out of her high chair, and/or to go outside and play. “Allie can’t get out. Allie can’t get out. Allie go outside. Allie go outside.” We didn’t cave. Suddenly, she said sadly, “Allie never never go outside. Never never never go outside. Allie never never go outside.” I told her to stop exaggerating, she’s outside plenty.

Then on the walk home, she pointed at stores we passed and said, “Allie never go in there. Allie never go in THERE. Allie want ice cream. Allie never eat ice cream. Allie never go in there.”
In amazement and awe, Mr. W asked me, “Where did she learn that?”
I looked at him incredulously and said, “From YOU!”

They’re always listening, parents. Always always always.

P.S. Today marks her least nutritious meal she’s ever had: restaurant chicken nuggets (but made with real chunks of chicken breast), mac-n-cheese, bits of carrots/peas/potato from my chicken pot pie, and a few pieces of shoestring fries. I took 80% of the fries off her plate and gave them to Mr. W. She did eat grapes, honeydew and cantaloupe for dessert, though. She tried the fries and said, “Allie like it.” She said the same thing about a tiny bite of her dada’s pickle. Crap. Well, she’s almost 2 years old, I suppose it’s inevitable that she try some of this junk, but it’s so high in sodium and so low in nutrition that I felt like the shittiest mom in the world when she stopped mid-walk on the way back and said with a sad little frown, “Allie’s tummy hurt.” I hope it was just because she was running and jumping so soon after she ate, and not because she ate total garbage. 🙁

We liked our photos shot by Kari Flores last year so much that I’d booked her again for this year. We did the shoot on Sunday in San Juan Capistrano’s historic Los Rios old town district. Allie was more temperamental than she was last year, since she’ll now exert her will just to assert her will, even if her true intentions are in line with ours. So when we asked her to smile, she said “no.” Just because she wanted to say no. Even when we make her laugh, she’ll clamp down on her lips and try hard to keep a straight face. Just because she’d previously told us she doesn’t want to smile for us. But she giggled up a storm in the car on the way back, and then declared to her dada, “Allie’s happy.”

Kari sent this “teaser” yesterday. It makes me hopeful that we have some smiley photos in the mix. 🙂

Bet you can’t tell I spent 40 minutes curling my hair that morning with a curling iron.

To address Allie’s eye issue, Mr. W and I took Allie to her first pediatric ophthalmologist appointment yesterday. The doctor was a young(ish) Indian guy and I liked him. Could’ve been one of my UCLA friends. By that I mean he seemed cool and was one of my generation. Allie did really well, was cooperative, even with the dilation eye drops. The nurse was expecting a full-on fight and tantrum but the most Allie did was whimper, and even held the Kleenex to dab her own eyes after each of the drops (3 in each eye, 30 secs apart). So here’s the diagnosis.

Like I thought, Allie has intermittent exotropia. This only happens when she’s tired or otherwise not “feeling it.”
Unlike what I thought, the doctor says it’s alternating, meaning both eyes turn outward, and that it only appears to me like only her right eye turns out because Allie favors her left eye. So she’ll fix on the image with her left eye and let her right eye do its own thing.
He also found some mild hyperopia (far-sightedness) in both eyes. This could be due to her difficulty focusing inward (converging).

He said her intermittent exotropia has good control and good recovery, and that he measured the degree of outturn at 20 degrees.
Also interesting, he found no amblyopia.

His treatment plan: alternatingly patch both eyes for an indeterminate amount of time. Followup visit in 3 months.
So basically, I cover her right eye with a patch 4 hour a day on Mondays, Wednesdays, and Fridays. Then I cover up her left eye with a patch for 4 hours a day on Tuesdays, Thursdays, Saturdays. She gets a break on Sundays.

We bought a box of patches on the way home and Allie allowed us to put one on her in the afternoon, and she asked me to do one, too. So I did. She kept hers on for 20-30 mins before taking it off. I was nauseated and had a headache within the first 5 mins, started to feel edgy, like I was on the verge of a claustrophobic panic attack, and my patched eye had an over-sensitivity feel going on. I wanted to rip it off immediately but kept it on cuz Allie still was going around and playing with hers on. My headache and nausea persisted the rest of the night. I still have a headache now.

Mr. W and I also spoke with 3 people who had patching done in their childhood. It didn’t correct anything for any of the 3. Two of the three, however, didn’t have what Allie has (drifting eye), but instead had what used to be referred to as “lazy eye,” where one eye’s vision was just a lot worse than the other eye. Allie’s eyesight measured at good and even between the two eyes, altho the doctor wasn’t able to tell us in the quantitative measurement of the 20/20 scale because Allie wasn’t cooperative in identifying the Allen pictures (which are used in place of letters) on the chart. At home, however, I could ask her what each image in the Allen pictures are, and she would tell me, “Birdie. Hand. Bike (it was actually a stick figure of a car, but I can see why it looks more like a bike with a steering wheel). Telephone (this surprised me cuz it was a rotary phone and she’s never seen anything but cell phones in the house). Happy burday cake. Horsey.”

Christi also asked her pediatric ophthalmologist friend about Allie’s treatment plan, and the response was she would’ve done corrective eyeglasses, and that alternate patching wouldn’t have been her plan because it discourages the eyes from working together. I agree; since Allie’s problem only occurs infrequently and the eyes get a chance to cooperate most of the time, why would we make the brain separate the eyes and take away that benefit? Yeah, it’s a separate muscle training thing, but still, there’s gotta be a better way.

I’m still interested in vision therapy. Allie’s pediatric opth does SOME vision therapy, but only for older kids (age 5+) and doesn’t think it’s effective for Allie’s condition, and he pretty much said what I’d expected a Western doc to say about it, i.e. there’s no conclusive evidence it’s more effective than traditional methods, such as patching and surgery. He said he’s conservative in his approaches, so he would only do corrective glasses that force Allie’s eyes to work harder at convergence if Allie were already wearing glasses, and would only recommend surgery if her eyes were turned out more than 50% of the time. We’re at less than an hour a day of outturn presently. Probably less than half an hour. So I’ve called 2 local pediatric optometrists who do vision therapy already. One said they don’t do it for kids this young because they’re simply not old enough to follow instructions, which I understand. But the suggestion was to bring Allie to them for an evaluation in a year, since if she’s ahead of the curve in her abilities and understanding, she can start this earlier, too. The second office is going to have their vision therapy coordinator call me back and discuss. I expect this call some time today.
Earlier, a coworker came in and told me that her younger sister had much more severe exotropia in her childhood, and that instead of patching, they were recommended to take her to vision therapy in a local college of optometry/ophthalmology. It worked. The sister isn’t completely cured, just like Allie’s ped opth said she wouldn’t be, but it’s well-controlled to where the sister’s eyes are cooperative and straight all the time unless she’s exhausted, and she has no issues with 3D vision. Allie, btw, tested fine on 3D so her eyes ARE able to work together. (Doc put 3D glasses on her, showed her a picture of a fly and said, “Touch the bug’s wings.” And she swiped 2 inches above the picture.)

Christi sent photos of Allie with my description of Allie’s eye symptoms to her pediatric ophthalmologist friend, who responded:
“sounds like intermittent exotropia which can manifest around that age. Doc will monitor to see if affecting visual development and frequency.
Not urgent but don’t want to wait a year either, like some of my pts wait for years…?!?!
Many reasons for eye to start wandering. Amblyopia, structural…etc. need to start with complete exam with Peds opth”

So I emailed Allie’s pediatrician at Kaiser, with a description of the symptoms and the 2 photos in the previous post. He responded within an hour or two saying that he has already put in the referral for Allie to see a pediatric ophthalmologist and that I should be contacted by the office of one in the next 2-3 days to set up an appointment. Wow, that ball got rolling faster than I’d dreamed. He recommended I see the specialist sooner rather than wait for Allie’s 2-year birthday. He also said that he believes Kaiser does offer some vision therapy, but thought that it was limited to kids age 5 and older. Bummer. So I may still need to go to an outside therapist and pay out of pocket, unless I can figure something out with insurance.

Some levity is needed…
Allie: Dada, why pee, why pee?
Dada: Huh? Why pee?
Allie: Why pee? Why pee? Why pee?
Dada: *blank*
Allie: Towel. Towel?
Dada: You want a towel?
Allie: Yeah!
Dada: Sorry, I don’t have a towel, but I have a wipey — OH! WIPEY!

I guess dada not speaking fluent Allie is forcing her to expand her vocabulary.

Since late July this year, Allie’s eyes have seemed to occasionally point in 2 different directions. It was initially just before her nap or before bedtime as she sat in her high chair for her lunch or dinner, spacing out. More recently it seems to be anytime she’s tired, so it’s common after she wakes up in the morning, prior to nap or bedtime. It’s now become pretty apparent to me that it’s the right eye drifting out to the side (away from her nose), whereas the left eye remains focused.

I was hoping it’d go away, since it was only happening occasionally, but the occasions have become more common now. Since Flip Flop Girl (Christi) and I were online chatting about parenting-related things last night, I decided to finally tell someone about this and (eek) make it a reality with my acknowledgement. Turned out it was the best thing I could’ve done. She validated my concerns, did some brief research online and said it seems like it could be extreme farsightedness. I was just hoping it wasn’t a brain tumor suddenly pulling on Allie’s internal eyeball parts. Christi offered to ask her friend about Allie’s symptoms for me, since her friend is a pediatric ophthalmologist. I gratefully accepted. Meanwhile, I thought, since Christi did some research, I ought to, too. So I looked. And I looked. And I looked. And I narrowed down the possibilities. And narrowed down the specifics. And I concluded with intermittent exotropia.

Within my research, intermittent exotropia seems to be a brain issue and not an eye issue. This can be tested by having Allie focus on my finger near her face when she’s having an “episode”, then covering her good (left) eye and seeing if the right eye immediately jumps in to focus on my finger. If it does, then it’s not a weak muscle that makes the eye unable to focus inward. Instead, it’s that her brain does not acknowledge the image being broadcasted by her right eye, so it ignores that eye’s information intake. Surgery can cosmetically correct the eye and force it in, but it doesn’t cure the underlying problem of making her brain recognize her right eye’s information. But there is something called “vision therapy” that could train the brain to properly accept and use information from the affected eye. Things like wearing 3-D glasses or glasses where she gets 2 different color lenses on each eye, then she’s asked to see or follow something that only can be seen by the weak eye. It’s less invasive than surgery AND the old method of forcing a kid to wear an eye patch over her “good” eye 3-8 hours a day for 3-12 months straight. Talk about traumatic. And it seems like vision therapy may be more effective both in immediate correction and in long-term maintenance. Plus it doesn’t risk messing up the good eye.

It’s October, which means we’re within the window to change/add to health insurance coverage to take advantage of any help with paying for this stuff. So glad October hasn’t passed me by until I go this swift kick in the pants to do something about this; I was going to just wait until Allie’s 2-year appointment at the end of next month, but open enrollment would be closed by then. I’ve received some advice to look up pediatric ophthalmologists who are board-certified in vision therapy (apparently still a new thing not recognized by the American Academy of Ophthalmology, but you know what they do recommend? Surgery. Screw that as a first line of defense; learned my lesson in Allie’s broken teeth/pediatric dentistry situation), and will be doing that. Insurance typically will pay for a surgery, but not therapy, so I’ll probably be paying out-of-pocket for the less invasive therapy (less risks, more promising). But I’m willing, able, and ready.

These are very recent photos.

Last night, upon exiting California Pizza Kitchen with Allie & her dada…
Allie: Dok. Dok. Dok.
Dada: What?
Allie. Dok! Dok!
Dada: What? What’s dok? I don’t understand you, baby.
Allie: People sleeping?
Dada: Yeah, people are probably sleeping, because it’s dark — oh! DARK!
Allie: Dok!