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 29, 2010

First normal day in ages!

Well today we have nothing to do, nowhere to be. It's the first day in ages when I haven't needed to be at PMH or finding a babysitter for Annalise or anxious about Joel's next appointment. Life just feels normal.

I am taking the kids out for breakfast (well Annalise anyway, with all the surgeries, Joel hasn't really had a chance to try "real" food! He had a spoonful of mashed, warmed banana last night but that's it. I'm not worried about his solids, we do BLW anyway so it's worked out well). After brekkie, we are going to the craft shop to buy more supplies to make a rocket ship and some bracelets. Church tonight then Mundaring Truffle Festival tomorrow. This is how life was before we'd even heard of PHPV, just cruising along with no interruptions but you know what? All this stuff we're going through has to be of some benefit to someone! Surely I am helping someone with my experiences, or if not now then later down the track. Everything my little family has been through in the last 3 years just makes my life story that little bit more colourful and I wouldn't change it for the world.

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