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

Tuesday, November 30, 2010

We are all set to get a prosthetic eye

I have met with the Registrar at PMH and he has spoken to Joel's surgeon and they are happy for us to proceed with getting a prosthetic.

On one hand I am really happy that Joel will be getting an eye to help his bad eye look a bit more "normal". On the other hand I am a tiny bit sad because it's basically saying he will never see out of that eye. I am starting to come to terms with that though, I have probably dealt with it as much as I can and have accepted it. Because the hospital is happy for us to go ahead with the prosthetic, they will cover the cost. We just have to wait for them to send a letter to Geelen and then we can meet with them again.

Here is a link I found to a website with lots of pics of kids and adults with shells.


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