Tag Archives: prosthetic eyes

Oli’s Prosthetic Eyes

6 Mar

Today Oli’s daddy drove her to Dallas to get a new pair of eyes. Every 3-6 months Oli sees her Ocularist, Randy Trawnik, and he makes her a bigger pair. Because she has anophthalmia (missing eye) on the right and microphthalmia (little eye) on the left, her entire eye structures on both sides are underdeveloped. The goal of the prosthetics are to increase them in size each time she gets new ones. It therefore stretches out the sockets and it makes the eyes bigger. Her left eye is almost at normal size due to intensive conformer therapy (I use conformers, painted conformers, and prosthetics interchangeably)

Here are some pictures of Oli’s prosthetic eyes. If anyone has any questions about them, please ask. I’d love to answer any questions you may have.

These were some of her first peg conformers. Remember “OMG! What did you stick in her eyes!”? Well, these were the awful ones prompting that response from people.

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This is one of the first painted conformers that she got. Only the iris was painted because we needed to leave the rest clear just in case she had any light perception. Until we were absolutely sure that she didn’t it stayed clear. Now we know that she doesn’t see anything at all so the whole thing can be painted.

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These are some of the last ones that her Ocularist in California made her before we moved to Texas. They were getting really thick because the socket was stretching so much and it became deep. The conformers had to fill most of that space so they wouldn’t fall out. Also because they still needed to push against that tissue at the back of her socket so it would continue to stretch. She eventually had a surgery last year and she got an implant in that right eye. Now the conformers don’t have to be so thick.

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These last pictures are of her custom fit prosthetics made here in Dallas. Her Ocularist puts her to sleep once a year and takes molds of her eyes so he can make them fit exactly in the shape of her eye.
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Seth Was On The Teacups; I Was Still On The Tornado

21 Feb

“Home is where you are loved the most and act the worst.” ― Marjorie Pay Hinckley

I remember that first year of Oli’s life being full of incredible pain and sadness. I remember wishing that she was older so I could just get past all of those feelings. I thought that she would just hit some magical age and all of those feelings would just disappear in an instant.

“If only she was 6 months old…”

Then she turned 6 months. Nope. The pain was still there.

“If only she was 1…” Nope.

I couldn’t understand why I just couldn’t get over it?

Seth made a comment when Oli was about 6 months old that he was so glad the first 6 months were over because he felt so much better. The roar of our wild roller coaster ride had dulled to the excitement of the Teacups.

I looked at him and smiled.

“Yes. Me too. I feel the same way.”

I didn’t feel that way at all. Not one tiny bit. I felt exactly the same as the moment when the doctor said she didn’t have any eyes.

I…was stuck.

I feel like I missed enjoying Oli as a baby because I spent every waking moment worrying about her.

When she turned 1 and it was time for her to get her eyes I thought that, that would be the moment I had been waiting for. She would get eyes and everything would be right with the world again.

Nope. It didn’t happen then either.

Don’t get me wrong, it helped. Once her eyes were painted, I didn’t feel like I had to hide her in her car seat when we went out to avoid the stares and the comments.

It made it a little bit better, but it turned out that it wasn’t her appearance that was bothering me. She was beautiful either way.

The first couple of days after she got her first pair of painted conformers was a mixture of highs and lows.

(Her first pair fit perfectly and were not crooked.) The moment Beverly put them in and turned Oli around to face us was incredible. Suddenly my girl had perfect, beautiful blue eyes.

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She had eyes.

We couldn’t stop staring at her, turning her this way and that. Examining her face from every possible angle. Oli had a funny look on her face, feeling the emotion in the room.

“Oh, Oli. Look at you! Look at your eyes baby! You’re so beautiful!” I gushed over her and cried with emotion.

We got back into the car and started the drive back to Las Vegas. Oli was still in a car seat facing the back seat so I couldn’t see her face when I turned around to check on her. I found myself making up excuses to stop the car. Suddenly I had an attack of the munchies, the thirsties, and needed 10 bathroom breaks on the drive home. Of course I had to take Oli out with me. (Even though Seth was still in the car.) I would get her out of her seat, pick her up, and then spend 5 minutes just staring. It was an amazing day.

The next morning the rush of that high faded and I began my descent to another low.

They had given her a pair of eyes, but she still couldn’t see me with them.

My girl still couldn’t see.

Why Are They Crooked?

20 Feb

“One of the reasons I blog is because I can’t afford
to pay for proper therapy.”

Once we finally arrived in LA it was one of those hurry up and wait moments. After what seemed like hours but, really was only 20 minutes, the receptionist called Oli’s name.

“Have a seat and Beverly will be with you in a little while.” she tells us.

A little while? I was practically bursting from my skin with impatience.

The ocularist, Beverly walks through the door a few minutes later.

We started out with Beverly’s partner, Steven Haddad but transferred to Beverly after a few visits. She was working more on different custom made conformers although Oli’s had never been custom fit. What I mean is, no mold was taken of her eye sockets and then a conformer made based on the mold, like it is now.

I would have preferred to stick with Steven.

Beverly was nice, but she would just never listen to us as parents. She was a rough spoken, tall, blond, older woman who liked to think that exactly what the prosthetic looked like or how it was positioned didn’t matter.

I didn’t really care at first when it was a little crooked and never seemed to sit straight. After a few appointments, I started to get annoyed.

“As long as it doesn’t bother her, it doesn’t matter that it looks like one eye is looking at the ceiling or that one is turned in. The point is that it is bigger and it’s in.” she would tell me.

Yeah, Beverly it does matter because it bothers me.

I didn’t want her eyes to look crossed or rolled toward the ceiling.

She never listened though. I should have been more vocal about it looking right.

After all, we were driving 6 hours one way and spending about $1000 on each eye.

I guess I just didn’t want to make a big fuss and trusted that she knew best because she was the professional. This was a common theme in the first few years of Oli’s life. I just trusted that everyone treated and loved Oli like I did. I thought that if they were teaching or caring for her they would give it 100% each and every time.

Now I’ve learned that, that isn’t always the case. Most of the time it is, but I’ve learned to trust that nagging feeling in my heart that tells me something isn’t as it should be.

I trust my abilities as her mother and know that I will always do what’s best for her and if it differs from what someone else is telling me, I have the right to say no.

It is my job to always give 100% because it’s not always the job of everyone else even when it should be.

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See how her right eye looks like she is looking at the sky.

Real, Fake Eyes

19 Feb

“Never forget that anticipation is an important part of life. Work’s important, family’s important, but without excitement, you have nothing. You’re cheating yourself if you refuse to enjoy what’s coming.” ― Nicholas Sparks, Three Weeks With My Brother

A few days before Oli’s first birthday I woke up after only sleeping a few hours. The big day was finally here. The biggest day! She was getting her first pair of painted prosthetic eyes!

I could hardly contain my excitement. I couldn’t even imagine what she would look like. All of those feelings returned from when I was pregnant and would lie awake at night trying to picture her.

Before she was born I imagined her with big brown puppy dog eyes, long full lashes, and a sparkle that would melt everyone’s heart. Now I was imagining the same thing minus the long lashes and the sparkle. Little did I know how fantastically real, ocularist’s can make fake eyes. That sparkle was there, just painted on.

I rushed everyone through breakfast and we all piled in the car for the trip to L.A.

The drive seemed to take forever. Seth and I passed the time talking about what we each thought she would look like and what color we were going to choose.

“Brown. Or maybe blue. Kekoa has blue eyes. Or green like yours?” I couldn’t make up my mind.

“Blue. Kekoa and Thalia both have blue eyes and her little left eye looks like it is blue.” Seth makes the final decision.

“Blue it is.” I honestly really could have cared less by this point. All of those dreams of big brown eyes were receding from my mind and by the time she was 1 year old I just wanted her to have any kind of eyes. They could have been purple, red, or painted like cat eyes and I would have been absolutely thrilled.

Months and months of staring at blank eyes had made me realize how much I wanted to look at a pair of real looking ones. Although we had shed the ghastly pegs months ago, I was now anxious for the conformers to be painted.

I knew that I would love them, but I had no idea how much the prosthetics would change her whole face and appearance…

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Oli before she got her painted prosthetics.

Where do you look when someone doesn’t have eyes?

8 Feb

“what you need and what you want aren’t the same things,”

― Cherise Sinclair, The Dom’s Dungeon

Three weeks after we took Oli to LA to get her first pair of conformers we took her back to get her second pair. She was very fortunate because her right eye (the empty socket) actually stretched a considerable amount. The ocularist was able to fit her with a conformer twice the size of the first one. Sometimes conformer therapy just doesn’t work and kids are never able to wear them.

“So. . .Mr. Haddad, when are you going to lose the awful pegs and put flat painted conformers in? Next month? A couple of months at most, right?” I am incredibly impatient.

“No. It will actually be 2-3 more months before I can put a flat conformer in that right eye. It’s just too small. I wouldn’t be able to get it in or out of her eye without that peg. And she will probably be close to her first birthday before we put painted ones in that look like real eyes.” He explains quietly.

“Oh. That long huh? I guess that’s okay.” I almost start crying.

I was screaming inside my head,

No. No. No! That’s is absolutely not okay. I want to look into her eyes! Fake or not. I should be able to look into her eyes!

Where do you look when you are speaking to someone if you can’t look into their eyes?

To me, eye contact was very important. It showed people that I was paying attention, interested in what they were saying, and respectful. I could gauge their feelings and reactions to what I was saying when I looked into their eyes.

I had to learn with Oli that I could still do all of these things with her, in a different way.

I learned the delicate map of her facial expressions. The raise of her eyebrows and the little bit of furrow between them when she was listening. Her toothless smile, scrunched up nose and the turn of her head when she was happy.

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Her tightly pursed lips turned down at the corners when she was sad.

I learned to look at her whole face and body language to gauge her reactions and feelings. I learned to read her without making eye contact, but with the complete confidence that I knew her emotions.

I learned that I really didn’t need to see her eyes to make a connection with her.

I learned all of this. . .but it never changed the fact that I wanted her to have eyes. Real eyes, fake eyes, glass eyes, plastic eyes. I didn’t care. I wanted her to have them.

Memorizing the Cars Movie was not an aspiration of mine.

6 Feb

“Love doesn’t make the world go ’round. Love is what makes the ride worthwhile.” -Franklin P. Jones quotes (American Businessman, 1887-1929)

Our first trip to see the ocularist in LA was just a little traumatic…for me. Oh, you were worried about Oli? No, she was fine. I mean she cried a little bit when her ocularist Mr. Haddad first put her new conformers in but, it only took literally about 5 seconds for each eye. At least for her first set.

As her eyes stretched and the conformers got bigger sometimes it was hard to get them past her eye lids. She has only had a couple sets that were really difficult to get in. Once they are in they’re not painful.

Well, wait, I guess I don’t know that they’re not painful since she can’t tell me. I don’t think they are though because Oli doesn’t try to claw my eyes out or maim me in some way which is what she does when she is in pain.

The trips to see Mr. Haddad, and later his partner Beverly, were exhausting. We drove 6 hours (one way) to Hollywood, CA from Las Vegas every 3-4 weeks. We were usually gone about 14-16 hours total because of the time it took to snail through traffic in Los Angeles. We never stayed over night because it was just too expensive and usually one of us had to work the next day.

We took both children with us every single time. Kekoa was 19 months old when we went the first time and Oli was 2 months. To say that it was a little stressful sometimes would be an understatement. But that is what Oli needed so that is what we did.

Thank God for little portable TV’s you put in the car. However, if I never hear or see the movie Cars again it will be too soon. Kekoa watched that movie at least twice every time we went, for 2 years.

I’ll let you do the math.

Let me tell you, you get to know your spouse far more than you ever really wanted to cooped up in a small car with 2 crying children for that many hours. Driving that far so frequently was not without humor either.

I remember one night (actually the wee hours of the morning) we returned home after one of our trips. Seth got into the shower and then immediately laid down in bed and passed out. I was still awake reading when he shot up and out of bed in a panic 30 minutes later.

“Seth! What’s wrong? Are you okay?”

“I almost crashed the car Shannon! I almost crashed!”

“What?”

Apparently he was dreaming that he was still driving and thought he had fallen asleep at the wheel. It was HILARIOUS!

I know when he reads this he will give me his usual response to my rendition of this story.

“Shannon, it was NOT funny.”

It was.

I also want to dispel a common myth about Oli’s “glass eyes”.

They are not made out of glass any more, they are made out of acrylic. There, now you know. It bugs me when people say “glass eyes” I don’t know why, it’s silly. I know…I have issues.

Here is a little history about prosthetic eyes courtesy of Oli’s new ocularist Randy Trawnik.

A Brief History of Ocular Prostheses

The art of making artificial eyes has been practiced since ancient times. Egyptian priests made the first ocular prostheses, called Ectblepharons, as early as the fifth century BC. In those days, artificial eyes were made of enameled metal or painted clay and attached to cloth and worn outside the socket.”
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The first in-socket artificial eyes made in the 15th century were made of gold with colored enamel. In the latter part of the sixteenth century, the Venetian glass artisans discovered a formula that could be tolerated inside the eye socket. These early glass eyes were crude, uncomfortable to wear, and very fragile. Even so, the Venetian method was considered the finest in the world. They kept their methods and materials secret until the end of the eighteenth century.
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In the 17th century the center for artificial eye making shifted to Paris for a time. Improvements in techniques and materials followed. The French word oculariste was given to the makers of artificial eyes.

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In the mid-nineteenth century, glass artisans in Thuringia, a region in eastern Germany, developed a superior glass formula for the making of artificial eyes. Combined with their techniques of blowing hollow glass objects, the center for glass eye making moved to Germany. The methods of making hollow kryolite glass prosthesis are still used today in Germany and many parts of the world. Glass eye making was introduced in the United States in the mid 1800’s by immigrant German ocularists. Although the American Ocularists of this era continued to make glass prostheses, the kryolite glass material itself was exported from Germany.

The onset of World War II cut of the export of kryolite glass to the United States. With so many injured soldiers needing artificial eyes, the U.S. government searched for a replacement material. Almost immediately the new plastics industry came to the rescue. Medical plastics were already being used in the dental field before World War II. The Department of the Navy set up a crash course in applying plastics to the field of Ocularistry that lead to the development of medical grade acrylic plastic and its use in eye-making. Combined with the use of impressions in the design of the artificial eye, modern prostheses can be perfectly fit for each individual patient. The popularity of these methods has continued to increase over the years. Today the vast majority of patients all around the world wear ocular prostheses made of acrylic.

A medieval torture tactic

26 Jan

“I liked things better when I didn’t understand them.” -Bill Waterson

So that’s what I did. I just took her home. I didn’t have a battle plan or an army and I certainly didn’t have a force field. I had the only things I could offer her at the time. I had an infinite amount of stubbornness, a heart bursting with love and two eyes that I would share with this little girl for the rest of my life.

An enormous amount of weight settled on my shoulders that day as I strapped this tiny person into her car seat. I could feel the weight threatening to suffocate me.

Before I left the hospital, my sister in law, gave me a website. It was for an organization called ican. International children’s anophthalmia and microphthalmia network. www.anophthalmia.org I did not know that this information would become a life line when I began my adventure into the unknown.

I did know that no one in that hospital had ever really seen a child born with this condition. The only person they could direct me to was a pediatric ophthalmologist.

So before I left the hospital I googled ican. It was full of people,terms and images that were so foreign to me, I had a hard time comprehending what they were saying.

I didn’t know what an Ocularist was. This was a profession? I had never heard of it. Of course, I had never heard of a baby born without eyes either.

So I googled ocularist. Apparently he was some sort of artist that made these things called conformers.

I googled conformers and was overwhelmed by what I read. An ocularist makes, and then forces these conformers into the eyes of anophthalmic and microphthalmic children in order for the eyes to stretch big enough to wear painted prosthetic eyes. At the time, this sounded like some kind of medieval torture tactic.

What? This sounds barbaric! Wasn’t there some kind of new technology for these children? Something not so painful?

We would have to do this every month for years in order for her to wear prosthetic eyes. And it might not even work. Her eyes might never stretch enough to wear prosthetic eyes.

It said that we would need to start this process as soon as possible to give her eye sockets and eye lids the best chance of stretching. Then I read on another web site that if I didn’t do this to her, her face might cave in. (Untrue, but I didn’t know that until talking with other parents.)

I had to turn off the computer. I grabbed Oli’s little pink newborn blanket, buried my face in it and just cried. I cried for myself, I cried for her, I cried for Kekoa and Seth. I cried like I have never cried before. I did not want to do this. I did not want to have to put this little baby through procedures that would hurt her.

What kind of a mother volunteers her baby for pain?

But, I didn’t want her face to be deformed either.

I cried harder.

And then I picked her up and whispered “I’m sorry” again.

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