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

Monday, October 18, 2010

Met some other parents and kids

So today we went to visit the Ocularist to talk about Joel but also to meet two little girl's who have prosthetic eyes due to micropthalmia (the abnormal smallness of one or both eyes) Joel's PHPV is micropthalmic.

The first little girl, Emelia who is 4, poked her head out from behind the door and looked straight at me and I could not even tell she had a prosthetic eye. I was kind of waiting for someone to bring the "real" Emelia out haha. She was a gorgeous little girl and she and Annalise got along really well, playing and laughing. I saw the Ocularist remove the eye, he made it look so easy! Next we met another little girl who I think was being fitted for her first eye. She also had micropthalmia but also had what appeared to be a cataract or very cloudy eye. We met her mum and dad and also Emelia's mum and grandmother. It was so good to be able to talk to people who understand, who don't say "Oh well, it's just an eye" or "at least he can see out of the other one" or the most annoying "it could be worse". The other parents and the Ocularist seemed to understand that these were our KIDS, our babies and whatever happens to the them causes us some pain and is hard for us to deal with. That it is a real issue in our lives. I am so hapy we went.

What they are thinking of doing for Joel is using the contact lens that we already have for him, as we know that it fits, and painting an eye over that so it will look similar to his good eye. We go back on Thursday with the lens to have a proper consultation.

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