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, September 20, 2012


Poor Joel has conjunctivitis. He can hardly see, but it is getting better, poor little guy. His eyes have swollen up so much. I wouldn't normally go to the doctor for something like conjunctivitis, but I did take him because it was so bad and it came on so quickly. Literally within a day he had gone from clear eyes to caked full of puss. He is on Amoxcillan and Chlorsig which is helping. He hates having his eyes cleaned out though, he will only let Rich do it. We're waiting to hear back about the kindy, I'm so hopeful that he gets in. He begs to stay at Annalise's school every morning and loves to play there for ages after school. I've for lots of things planned for them over the school holidays to try to keep him amused, he's in that stage of asking a million questions about everything! He is sleeping better at night now, finally. He only wakes up once, if at all, each night. It's good for me because I'm up with Imogen at about 2am, then Joel was waking up at 11pm and 4am. We have moved house while we build a new house and he has settled in to his new bedroom well. He is still the sweetest little boy, always cuddling and kissing imogen so I'm hoping she doesn't get conjunctivitis too.


  1. I hope he gets better soon! Conjuctivitis is awful.

  2. It is awful! Thankfully Imogen didn't get it but every time I rubbed my eye I was sure I had it lol. Turns out I was jut tired haha