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, April 26, 2012

Joel is now 2!

I can't believe how fast time flies with three kids! Joel has turned two, Imogen is 8 months old and Annalise will be 5 very soon. We are all doing very well, albeit very busy! His eye started to irritate him about a month ago so we went back in to see the Geelen's and they have bulked up his prosthetic with acrylic and it now fits a lot better. He still absolutely hates having it put in every day, although it is getting easier to take out at night time. It's probably a relief to have it out, like when you get home and take your shoes off and have that "Aaaaaah!" feeling. The only thing I have really noticed that he has great trouble with is going down steps. If he is holding my hand he will just fly down, his feet don't even touch the steps. If he's going down on his own, he will use both hands to hold railings and go don sideways. He does do other small things that only I notice because I know he can't see out of that left eye, like looking at the iPhone at a funny angle. Nothing major, he's really just like every other two year old boy!