Back To The Ocularist

June 21, 2014

After about 6 months of getting more used to wearing her prosthetic shell (we call it a lens) we went back to the Occularist to check if everything was ok.  I had noticed that Emily's eye was getting red more often when she had it in for a whole day and she had been starting to complain that it was bothering her.  We hadn't been back to the office in (don't judge) a year and a half.  I know...mom of the year for sure right?  Before having Dr. Kane's help in getting Emily to finally wear the lens back in January, she had been scared to wear it, and I had been terrified to even attempt to put it in.  But...we've had a lot of success in her wearing it more consistently over the last 6 months.  She has gotten more used to it, and I've become more comfortable with putting it in and taking it out.

While at the office, Christina, the occularist, felt that the lens was touching the center of her eye too much, so she decided to make a new lens and create a deeper interior to allow for more space between the lens and the front of her eye.  She hoped it would help to alleviate the irritation and redness that she had been experiencing.  We left without trying it give her eye a rest. I would put it in the next day and see how things went.  If the size and shape was ok we would come back in a few weeks for a final adjustment.

July 9, 2014

The deeper sized lens seemed to fit better and caused less irritation.  Emily would wear this lens for about a month or so.  We hoped this size would be good, and if there were no issues, at the next appointment she would create the painted lens based on this size and shape.  We agreed that we wanted her to have the painted lens before school started, it would be really good for her.  Our next appointment would be August 16th.

Over the next few weeks we would be spending a lot of time in the lake, at the shore, and in the pool. So the lens was going to be out more than it was in because she can't wear it while swimming.  We were making progress, a little at a time, and I guess that's all that mattered.  Her eye was shrinking more, and without the lens in it was very much affecting the way she looked.  The lens really did change the way her face looked, I hadn't noticed it too much prior to now, but when she has the lens out, its very obvious. Its one more heartbreaking realization that her blindness doesn't just affect her ability to see, but so many aspects of her life.

But this appointment was very emotionally taxing for me.  In order to prepare for the next step, we discussed what we wanted her prosthetic lens to look like.  Did I want to have it look "normal", match her other eye as closely as possible, or something in between?  I hadn't put much thought into it before, mainly because it was something we really didn't know much about.  The few prosthesis I've seen in the past have always looked normal to me, I never realized that we could customize it to look exactly the way we wanted it to.  We talked for a while about color, the size and shape of the pupil and even the defined lines around the center and outer edges.  I decided that I wanted to start with something in between normal and what  her other eye looked like.  I didn't want it to look perfect and then draw attention to how different her good eye looked. I also didn't want it to completely match either because I knew at some point she may need another transplant and then it wouldn't match anyway.  Deciding how your child will look is surprisingly stressful and emotional.  Its not as easy as you would think.  A lot of details go into making it look just right...the shade of blue, the blurred edges of her cornea, even the not quite white part of her eye with just the right amount of blood vessels. It's hard to think that if I make the wrong decision, she won't look right. What if it looks TOO fake?  Will people make fun of her? Or will she look more beautiful than ever?  Parents normally don't get to make these decisions for their kids...its a lot of pressure to get it right.