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

Monday, September 20, 2010

Annalise is asking questions

The last two days, Annalise has said things about her little brother's eye. Yesterday she pointed to him and said "his eye is all sore, what's wrong with his eye?" and then this morning in the bath she said "poor Joel, his eye is sore". She said "can he see?" and I told her that no, he can't just yet but if we keep asking Jesus, one day he will be able to see. What else do you say to that? Breaks my heart. His eye is gradually looking worse and worse. It's not helping that he's got conjunctivitis but the iris isn't going a green colour like I thought it would after we stopped using the drops. It's stayed a really dark, almost black colour.

What am I going to tell Joel when he starts asking about his own eye? I think about it alot, what questions he will ask, how will I answer them?

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