Recent Eye Appointment Recap

We had our check-up yesterday and it went ok. Not good or bad, just ok. I always get super nervous before any of his appointments. No idea why, I just do. I guess I hate losing that feeling of control, of not knowing what the doctor will say after shining a flashlight in my two-year-old's eyes. I hate seeing B act nervous or upset as the elevator door opens and he remembers where we are, the sad way he clings to me like a koala bear, extremely afraid and visibly upset.

The doctor was pleased to hear that B does not have any wandering of his eyes while wearing glasses...that's a relief! It means the glasses are "working" as they should. Quite honestly, we don't really see much wandering when he's NOT wearing glasses. We see it sometimes, maybe 15% of the time, moreso when he's tired, but it's not nearly as bad or obvious as it was 7 or 8 months ago.

That's a relief!

However, the doc said B will probably need glasses forever, or maybe his vision will improve when he's nine -- there's just no way to predict.

The pediatric ophthalmologist leaves a lot to be desired. For example, after the exam, he mentions that B will likely be a candidate for contacts or even LASIK when he gets older. I didn't know that -- I always assumed LASIK was for near-sighted people who can't see far away, not necessarily for someone with extreme far-sightedness like my little guy. Anyway, so he mentions the LASIK possibility in the distant future (like 20 years) for our son, and I say, "Yes, and you never know where technology will take us in that time, they may have an even better option for teens and young adults with this problem." And the doctor just looks at me like what I've suggested is the craziest thing ever and says, "No, not really, LASIK technology won't change." Uh, ok, buddy, thanks. Way to be optimistic? Can you fix that bedside manner and give this mama some hope?

Here's what would have sounded better to the upset mommy: "Yes, you're so right, technology is improving each and every day, we just don't know what wonderful options await. There's no point in worrying from now about the future." 

Pfffftt. 

Other than the doctor's negativity, the appointment was fine. We go back in six months for a dilation and prescription check.

By the way, B is still keeping the glasses on just fine. Did I ever mention we got the cable wires that hook on his earlobes? SO much better than the standard frames that slipped down his nose every three seconds! Highly recommend the cable wires for two-year-olds in glasses!

The only time he doesn't wear glasses is during naps or at night, and when we go to the beach (leave them in the car so they don't get sandy).

Question: What do you do at the beach with little kids who wear glasses? Are there summer-time frames that are worth getting for water/sand play for little kids?

Ok, that's my update! Thanks for reading.

Strabismus in the New Year!

Wow, hard to believe that January is nearly over already but better late than never to wish you all a happy new year. :)

2012 is off to a great start for us, though the Struggle to Keep On Glasses continues. Yes, he does well wearing them, but come on, he's not even two years old. It can be exhausting dealing with pediatric strabismus. If he's not in the mood to wear his glasses, my main concern is that his eyes are getting worse, not better. Sad, indeed.

Did I ever mention that his first pair broke within the first week? Thankfully the eyeglasses place sent it back the manufacturer and claimed "manufacturer defect" so we didn't have to pay for the replacement. But that was an entire week that he wasn't wearing glasses, and when you're already stressed about correcting his vision, it can be an extra headache, KWIM?

Oh, such a joy having a tot in glasses. {sarcasm!}

How is everyone doing getting their kids to keep glasses on their adorable, tiny faces? What works for you and your kids?

Glasses on Toddlers: So Far, So Good

Just a quickie little post to say.......so far, so good!

We've been wearing the glasses for a week now and he ACTUALLY KEEPS THEM ON HIS FACE. Every so often he'll take them off and we put them back on, but he's really gotten the hang of them. Totally a million times easier than I had feared. Apparently he likes the glasses because they help him see better. (Well, duh!)

One quick note: haven't seen his eyes turn in AT ALL since he started wearing them. Is it a coincidence? Is it that his far-sightedeness has improved a ton already? Where is the strabismus? No idea, just some things I will bring up during our follow-up appointment with the doctor in two weeks. 

We've Got Glasses!

We picked up B's glasses yesterday. The tech at the doctor's office helped tighten them on his face and he didn't even scream. He sat quietly in my lap and let her tighten the frames. Yay!

He did the cutest thing once they were on his nose -- he smiled, he pushed them up and down, peeking over the rims, admiring his clear vision and brand-new sight. And surprise, surprise: he kept them on his face!!

Until we got home. I took them off for nap, but then he refused to wear them again the rest of the day.

But today (day 2 with our glasses!) he's much better and willingly wearing them. He wore them all morning and we just removed them for nap time. Wish us luck he puts them back on willingly after his nap.

We have to go back to the doctor's office tomorrow though because the frames are too loose and slide down his face a bit more than they should. Not entirely terrible but they seem a little too loose for his comfort level.

So far, so good. I am keeping my fingers and toes crossed that the glasses correct his far-sighted-ness enough that the esotropia goes away and he DOESN'T need glasses or surgery and can live an easy life. And be a surgeon or a pilot or an artist or whatever HE wants -- without visual limitations or impairments.

Thanks for reading, and Happy Thanksgiving!

Social Stigma: Study Confirms Strabismus Easily Recognized Even By Small Children

Found this depressing study -- Negative social bias against children with strabismus -- and it makes me worry how strabismus may affect B in school.

This is scary:

"Strabismus might also be a handicap from an educational point of view. It is particularly interesting and important to note that children with strabismus may not be given the same opportunities as others at school. We demonstrated that teachers have major preconceptions regarding the performance of strabismic children. They believe that these children may not be as capable of learning as 'normal' children and may not be able to fulfill responsibilites given to them. Besides, they prefer to assign duties to 'normal' students during cultural activities at school. These results strongly support the suggestion that strabismus may potentially have a negative impact on a child's education."

And this paragraph from the same study just about breaks my heart:

"In one study, children older than 6 years of age almost uniformly gave a negative description of strabismic dolls and hesitated to play with them (Paysse et al. 2001). A child who is viewed differently by his peers because of strabismus would probably have difficulties in socializing with other children. Our results give credence to this concept as the participants suggested that it could be harder for strabismic children to be accepted into a social group of friends."

Sensitivity Training, Or What Not to Say to Families Dealing With Strabismus

Quick little vent today.

First, yes, my boy is healthy and happy. The diagnosis of double strabismus and accommodative esotropia is not a death sentence. We're very, very blessed with two healthy children and love them beyond life itself.

However, can I just say how disappointing it is that people -- the general public, friends, family -- don't get how upsetting this diagnosis can be? People hear, "Well, he has strabismus and will have to wear glasses to correct it" and respond with the following sensitivity-challenged comments: 

• "Oh, is that all?"
• "Well, I wear glasses, he'll be ok." 
• "If that's the worst thing to happen to you consider yourselves lucky."
• (Silence -- this may be the worst of them all, when people ignore your concerns altogether.)

I get that 99% of society doesn't understand strabismus -- we didn't either until a month ago. But making my son wear glasses to correct strabismus (and prevent ambylopia, and prevent blindness...) is not as simple as putting a Band-Aid on a scraped knee.

As the pediatric ophthalmologist has explained, putting glasses on my son is ONE approach to fixing his eyes. It's the very first itty-bitty baby step in a lifelong vision challenge.

Am I being dramatic? Sadly, no. If the glasses don't work, do we move to multiple surgeries? Are people so jaded that they think surgeries themselves aren't a big deal or do they think issues affecting the eyes are not a very big deal?

It's just vision, after all, no need to be dramatic...really, who needs those pesky and overrated skills like depth perception (sarcasm).

This is my kid, and it's his life stretched out ahead of him, and it hurts. People don't mean to be insensitive, but boy, how they act otherwise.

*sigh*

Better replies would include the following:

• "You must be worried, no parent wants anything wrong with their baby."
• "I'm so sorry. I'm always here to listen and offer support." 
• "Sounds like this will be a challenge for baby B. What are your biggest worries?" 
• "If strabismus affects B's ability to read or play sports, I have faith he will excel in so many other creative and athletic ways!"

What's the craziest or most insensitive comment you've ever heard? What's been the most compassionate?

Expensive Strabismus: So $570 Later...

Yesterday's appointment was so stressful and exhausting that we decided to return today to purchase the frames.

Technically *I* picked the frames while he screamed in his stroller and acted highly offended every time the doctor's assistant tried to place the frames on his face.

We chose these Flexon Kids X-Games Edge frames. They look sporty and cool, and apparently the Flexon brand is the most durable for clumsy toddlers.

The frames/prescription fee was $199. Then we added two upgrades:

• Aspheric Ultra-Thin Lenses. No Coke bottles for our kid...super-thin lenses for an extra $49. 
• Transitions Sun-Sensitive Lenses. This makes the eyeglasses transition to sunglasses outside, and since we live in Florida, it seemed like an entirely reasonable way to spend an extra $89.

At least they're cool frames...but $337 glasses for a strong-willed 21-month-old who hates the very thought of wearing frames on his face? Shoot me!

(Yeah, I probably could have found a cheaper place for glasses but didn't think of that til just now. We might be hitting up Target Optical for frames no. 2, 3, and beyond. Live and learn...)

Add in the price of yesterday's appointment with the pediatric ophthalmologist -- $233 -- and we have just spent $570 in two days.

This is definitely going to be an expensive and challenging test of patience for us all. Strabismus sucks, but fingers crossed the glasses -- which arrive in 10 days -- help my boy.