A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS

Persistent Hyperplastic Primary Vitreous

also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".


Perth, Western Australia

Thursday, July 21, 2011

First fitting for painted shell

Yesterday we had our first fitting of Joel's painted shell with Paul Geelen from Artificial Eye Services. It went SO well, so much better than I expected and a lot less stressful on myself, Rich and Joel than I was thinking it would be.

When we arrived, Paul had an unpainted, white shell for us to try in Joel's eye. It looks like a very small ping pong ball, sliced in half horizontally. Before Paul had even put it in Joel's eye he said that he could tell it was going to be too bulky, so he disappeared for about 5 minutes to do some shaping of the eye, then came back and had me sit in an old fashioned style chair that Rich LOVED. It was brown leather and looked like it came from a 1950's doctor's surgery. I sat with Joel on my lap and Paul very calmly tried to insert the eye. Joel was quite comfortable with the whole process but the eye was still a bit too bulky at the top so it wouldn't go in properly. Paul took it away again and made some changes and we had a chance to see other artifical painted eyes and they looked so real. There was a pile of them on a bench next to some paints and they looked like all these little eyes staring back, some with blood vessels to make them look even more natural. Paul bought Joel's eye back and again we tried to put it in without restraining him but he'd clued on by this stage and resisted, so Rich held him as it was hard to hold him against my belly without him kicking and hurting me. The eye went in and Joel rubbed and rubbed it for ages. We just distracted him with all the toys and things in the office and he calmed down realy quickly. Paul said it was very cold when it first goes in and takes a while to warm up. The eye was white acrylic with green lines drawn on so that Paul could see where the centre of the eye is, which would enable him to paint the pupil on in the right spot. A few photos were taken of Joel with the eye in and some more of his non affected eye so that his prosthetic will look as natural as possible. Paul was able to get a good idea of where the centre was so he took it out and will paint it this week. We go back next Thursday at 3:30 to try out Joel's first painted shell! We're really excited. Even though the white eye looked like something from a scary movie, his eye was bigger and I can just imagine how much this will benefit him in the long run. I am really excited for him and so happy that I perservered with PMH to get them to write the letter to Geelen so we could go ahead and get it made.

The actual proceudre of putting the eye in and out is very similar to how we used to put in his contact lense, except the eye is bigger and thicker. Paul has a little suction tool to take it out too, something we didn't get with the contact although I can tell that will make things a bit easier because taking out the lense was our biggest problem. The artificial eye goes up under the top eyelid then the bottom lid is gently pulled down and the eye slots into place. I am not expecting that we'll be experts at it for a long time but it is good to have had that experience with the contact so we know what to expect.

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