imom: Spotlight of the week:Ruby

Ruby is the featured kiddo this week over at Eye Power Kids Wear!

Each week, Jessica, founder and fellow imom, features another wee one and their eye story to help educate people about eye issues, treatment and keeping the faith, hard work and love for our babies eye sight!

She's also starting her business designing fun shirts for kids who wear eye glasses and patches. Her kickstarter projected (blogged about here) has recently surpassed their goal!

Check out her site and some of the amazing stories!

imom: Worst. Eye Mom. Ever.*

*This post is not for the squeamish.

You know your child goes to too many eye appointments when she immediately runs to spot in the office where they keep the model eye ball. And then takes it all apart.

OK, now that the formalities are out of the way, I need to share our latest eye-adventure.

Last Tuesday, the hubby took Ruby to the contact specialist because it was time to get her contact swapped out and clean. Plus, her allergies were bugging her and her eye was red. By the time the hubby picked her up from daycare, she had managed to rub it out of her eye. Luckily, they found it so all was well.

So they go on their merry little way to see Miss Susan at the contact office. They clean the contact and look at her eye and realize it's pretty red and just needs a break. The doctor looked at it for a while and thought it was just irritated. They sent them home and told them to come back later in the week for the new contact.

Two days later, two days with no contact and no patching (and hardly any battles....sigh....) she and I venture up to see Miss Susan again. I'm hoping the new prescription contact has come in (she had her new prescription lens in less than 24 hours when she lost it. Another post for another day when I have a gin & tonic in hand). But as I'm getting her into the car seat, I notice something in her eye: a contact. Now I know this can't be because they took it out 2 days earlier and said no contacts for 2 days. But yet, here was a contact. In. Her. Eye.

Maybe I'm crazy? Maybe I'm seeing things because I always want a contact to be on her pupil. Maybe she found one in her crib and thought, "Huh, what's all the fuss about anyway? I'll just pop this bad boy in my eye and let's forget the doc office & hit the park!"

Ruby & Miss Susan, our contact lens savior playing on the floor. Susan is pointing out the lens in her play eye - the one she is missing. I told Ruby to pick up the lens and put it in her coat pocket. I know, another parenting win.

I arrive at the office and promptly tell them I'm crazy because there's a contact in her eye. They give me the same look I'm giving Ruby. We all look and sure enough, there is a contact right on her pupil. Apparently, at the Tuesday appointment I missed, one of the doctors thought he saw something in the far, far corner of her eye but couldn't really tell because it was so red and irritated.

We pop it out and give it a good cleaning. We pop in another contact** (an older one because of course the new one hasn't arrived when I'm off of work). Susan and I both hope the mystery contact is in fact the new prescription one we thought we lost a week ago and it had simply been floating around somewhere in the back of her eye. 

However a quick check under the microscope reveals that no, it is not the new one, but an older one. Meaning God knows how long that contact had been floating around in my baby's eye ball!!!!!!

If you've just had that squeamish feeling run up and down your spine, then yeah, you're right where I was too. I freaked out for a second and then said, you know, this isn't the worst thing in the world. It clearly didn't bug her as she gave no indication there was something wrong with her eye (and trust me, she usually does.)

I've known something like this can happen and frankly, will most likely happen again. And again.

So for now, I just do my best to make sure the contact is on her pupil and we start the patching process again. We're down to just an hour a day again. However today, she proudly wore her eye patch all day. On her shirt.

Ah Ruby....good thing you're so damn cute!

**I love how I say "pop the contact in" like it's a breeze when the truth is we can't do it ourselves. We have to go into the clinic about every other week to get it switched out and cleaned. It takes myself, an assistant and Susan to get the contact in her eye. She's a fighter. And a screamer. And a kicker. But with three of us (OK, somedays it takes 4 of us)....we can make it happen. Susan and I have also decided this counts as a workout because there's a lot of stress, increased heart rate, sweating, tears (mostly Ruby's. And if we're honest here, mine too). And then Ruby & I go to Starbucks for a treat which is thankfully next door.

imom: Will Patch for Cake

That's just one of the fun and great designs by Jessica Butler, founder of Eye Power Kid's Wear. She's another imom just trying to do the best for her little boy who, like Ruby, was also born with a pediatric cataract. 

She's got a kickstarter campaign for her t-shirt designs that are aimed at kids in glasses and patches. The fun designs and tongue-in-cheek sayings pretty much sum up things when our kids are out and about and people say things about patches and glasses. (Editor's note: Ruby doesn't wear glasses with her contact and patch but she will sometime I'm guessing within the year.)

I'm partial to the shirt with a super hero cape. Frankly, the world needs more shirts with super hero capes.

Especially for imoms. (Editor's note: that was totally and completely biased.)

Ruby will be sporting one of these Will Patch for Cake shirts soon. Because, really, what wouldn't you do for a yummy cupcake?

Patching Politeness

Ann over at Little Four Eyes has a great post this week about what not to say to young kids in eye patches. I think it's well written and very helpful. Especially now as our patching adventures have improved and we're venturing outside our house with the patch on.

We were at a play area at the mall on Saturday and I couldn't help but notice every kid that passed Ruby did stare a few extra moments, but not one of them said anything to her. She just laughed and kept climbing up the little slide, watching the big kids and then giggling as she made her way down.

(Ruby at our first out of the house adventure with the patch)

Thanks for the great advice Ann & LFE!

Progress!

Somethings happened recently. I'm almost afraid to put it out there in universe for fear it might change. But I'm willing to take a risk as it's been a long hard journey thus far: We Are Patching. 

 It started out slowly. What used to be 10 minutes of thrashing and screaming and crying (by both Ruby and me) with her squinting the bad eye so that she wouldn't even open it, has now turned into what I'm calling a symbolic eye patch protest for about 3 minutes, and then it's like, uh. ok, the patch is on, let's go play.

Don't get me wrong, I'm still on her the entire time. I have to keep my eye on her and my hands have to be faster than her speed of light toddler hands. She seems to forget the patch is on if she's occupied and happy. But if she touches it, it's back to square one.

When we venture out of the house, I'm in the back seat with her, keeping her happy, keeping her occupied, keeping her from ripping the patch off in the car.

And when I get cocky and think I've got this imom thing down, and get her patched and the two of us head out. I hear a little bit of laughter coming from the backseat as she rips it off and waves it around. (OK, maybe she doesn't laugh on purpose but I feel like she does. Like look mama, I'm totally in control - no patch for me!)

We've been able to patch anywhere from 1 hour to 3.5 hours. I'm still aiming for a 4 hour goal which is still low for our 4-6 hour a day recommendation from our PO. But as my hubby keeps reminding me on days when I'm bummed about a 1 hour patch session, this is a huge step from where we were two weeks ago. And he's right.

We had a visit to her PO about two weeks ago. The visit went well (I didn't cry for the first time, so really, there's a victory there). But we had the hard talk again about being strong with the patch. And this time, I think Ruby heard her doctor. The very next day she patched for 30 minutes at daycare. I almost cried when her teacher told me about it at pick up. We were both so excited! And it's been at least 30 minutes a day ever since.

Tomorrow we head back for the second part of her appointment (sometimes her appointments are really long and we have to break them up.) We are getting a new lens with a prescription that's not as strong as her current one (hopefully it's in so we don't have to go back a third time) and her glaucoma test. Fingers crossed we get good results on that one! Children who've had a cataract removed are at a higher risk for developing glaucoma.

But for today, we'll keep up the patching battle and be happy with what we have! Stay strong patchers! And stay strong imoms!

Patching, bracing & another guest post

I've written another guest blog post for Little Four Eyes, a great blog and resource for parents of children with a variety of eye issues.

This post is particularly important to me as it is heart wrenching: to brace or not to brace Ruby's arms in order to keep her from ripping off her eye patch after 25 seconds of wearing it. It's a tactic that does work. It's just one I was hoping to avoid.

I've been showing Ruby that her baby doll (the blue one) needs to wear her eye patch in order to see well. Each night when we come home, we patch her doll and give her a big kiss and a hug for being so brave. Now she's beginning to think all of her dolls have eye issues as well. This is going to be an expensive training lesson. 

A little "eye" obsessed

A while ago I started teach Ruby about body parts. 

We started with "Where's your nose?" and quickly moved on to "Show mama your toes."

She got pretty good at it. She can tell you where her head is. Her ear. Her tummy and of course belly button. She'll show you her teeth and pucker up her lips when you ask her. She knows her knees and she did look at me funny yesterday when I started explaining where her elbow was.

But, boy is this girl ever good at finding her eye.

Perhaps it's because we pay more attention to her eye than pretty much any body part in the house. And she knows it too.

She'll just look at me now and point to her eye and say "Eye!" She has no problem walking up to you and sticking her finger in your eye (when one is at her level) and letting you know that's your eye.

She points out eyes on all of her dolls and her teddy bear. The other night, as I read her a book, every time I turned a page we had to stop and point out all of the eyes on the little duck and little goose as they went on their merry way to find a pumpkin. (It's a holiday book but she loves it so much we keep it out all the time.)

The thing that gets me about this is, she only points to her right eye. The bad eye. The eye I'm always fussing over. 

Is the contact still in her eye? Is it actually over the pupil so we can patch? I now have eye patches in easily accesible places on both floors of the house so I can just grab one (or 5) and start the fun once we've looked at the eye.

I wonder if she knows she has two eyes since only one really works and we're always fussing over the other?

Now, if I can only teach her to say, "Mama, my contact has popped out of my eye. We must stop what we're doing right now and look for it."

For the record, when we took our baby sign language class I did ask the instructor to teach me to sign contact and she looked at me like I was nuts. I was the first parent in her 15+ years of teaching baby sign language that had asked that question. Come to think of it, she never really taught me the sign for "where's your contact?"

Patching update: little victories

Little victories.

That's what I'm savoring this week.

I've got a new eye patching plan. Two new boxes of patches. And new found determination to make us get through this phase of utter shit. At least that's what I keep telling myself.

I've started patching her baby doll. I talk about how important it is for baby doll (she really needs a name) to wear her eye patch so she can have two good eyes.

So far, Ruby just laughs when I put the patch on her. 

Then she takes off the patch and runs to daddy to give him the patch so he can be the hero daddy and rescue her and baby doll from the evil patch.

I also decided that eye patch = iPad time. I downloaded some fun toddler apps. She has zero interest in them. I also downloaded several episodes of Yo Gabba Gabba (all my mom friends swear this is the most adult tolerable show. So far I've seen about ten minutes of an episode and I think they're all smoking crack. This is the tolerable show? Oh lord....)

The other night, armed with my new tools and confidence, I put Yo Gabba Gabba on the iPad, put Ruby in front of it where she was immediately mesmerized by whatever those dancing things are. And then after a few minutes, I put on a patch, held her hands and helped her dance to the music. At first, it was working! She was watching the show, dancing and laughing! I was thinking OK, I did it! We can do this! We can patch! We can have two good eyes! 

And then two minutes went by and Ruby had had enough. Enough of the patch. Enough of me. And probably enough of Yo Gabba Gabba. After a long struggle with her to keep the patch on, she won, ripped the patch off and ran to daddy.

Not ready to throw the patch in, I let her calm down. Put the patch on baby doll. Talked about how important it was and then put the show back on the iPad and waited for her to come back over to me. She did. And I got her with another patch. This time she was on to me. We struggled, cried, wrestled and she ripped it off. Then she ran over to baby doll and ripped it off of her. 

Then, to give me a piece of my own medicine, she came back to me and stuck the patch on my eye and I swear she giggled.

She's right. Wearing the patch does suck.

But I'm sorry my dearest sweet baby girl. You have to wear this patch.

You can do it. We can do it together. You, me, daddy & baby doll.