Tag Archives: conformers

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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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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