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 1, 2010

All set for Monday

I just got the call from the hospital. His surgery is booked for 3pm on Monday. The pre op nurse said to just bring him in, last breastfeed at 12 noon, and see how he is. The Anethetist will make a decision on the day.

I patched him today. He FREAKED out, big time. I really don't think he can see much, if anything anymore :-(


  1. Tracie, from looking at the photos of Joel you wouldn't notice that there was anything wrong with his eye. I hope William looks this good when he reaches the age Joel is at now. Poor William doesn't have straight eyes like Joel so people definately notice that he has something wrong with his eyes!

  2. Kirstie his eye definitely turn out to the left. I have a few photos of it but because they're taken on the iphone, the resolution is really bad and they aren't clear enough to post on the blog. Hopefully we get a new digital camera soon so I can post some more pics of him because I think the photos that are here are a bit misleading! He does look good though, it is a real blessing the micro eye has grown since the last surgery.

  3. Good luck for tomorrow, it will all go well and you'll be back to patching in no time!! We are back patching as I think Willaim is using his good eye as the dominant one again! Yay.