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".

traciereinikka@hotmail.com

Perth, Western Australia







Tuesday, June 29, 2010

Still sick

This morning he's woken up with a cough too. I really don't think he's going to be well enough for the op.

I haven't been patching him for the last 3 days, he hasn't worn his lens either becuase of having the drops every few hours and taking it out and putting it back in. He is REALLY freaking out again while he's patched, so I am pretty sure he can see basically nothing again. Plus I was thinking that the surgery is only days away so those few days can't hurt but now....If his op isn't for another week, that could potentially be 2 weeks without the lens in :-( I feel terrible now, I wish I just pushed through it and put the lens in and kept patching. I don't even know how he'll go with the lens in today, his eyes are all red from this damn cold. I'm really frustrated.

Rich goes to Melbourne tomorrow for 4 days. He's back on Sunday. He's probably glad to be going so he doesn't have to listen to me going on about the op, lens, patching, drops, cold, coughs....

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