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

Friday, January 25, 2013

EUA and new prosthetic

Joel has been under another GA and had another mould made of his eye. The old eye was rubbing and causing a lot of irritation and he just flat out refused to wear it. The new one is taking some getting used to. He has had a fair bit of irritation from the new one and we are taking things really slowly. There's some new pictures of him on the blog :-)

Joel is 3!

Can you believe it, he's 3. Feels like a year ago I started this blog and had all those emotions that come along with something being wrong with my perfect newborn. His eye now is something that I don't even think about, except if someone kindly points it out at the shops lol. I don't mind answering the questions, I do mind people who stare but hey, can't help that. He had a great birthday, was well and truly spoilt and now has enough Spiderman gear to start his own retail store. His favourite things are dinosaurs, trains, trucks (especially rubbish trucks), dirt, mess and anything chocolate. He is still the absolute sweetest boy you could ever meet and is quite aware that something is different about his eye. If kids point and whisper he will look at me, waiting for me to say something to them or answer their question "what happened to his eye?" He is just beautiful. We didn't get a spot at the Guide Dog Association kindy. Apparently they had lots of applications earlier in 2012, we didn't get ours in until October when we found out about it. I am thinking about putting him in a 3 year old kindy program because he is so ready for something, I'll just have to find somewhere that isn't full. I think he will like that.