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







Thursday, September 30, 2010

Private appointment and latest with infection

I called Dr Lam's surgery yesterday to get in to see him privately so I don't have to to go through the public hospital system any more. The earliest appointment I could get is the 14th January 2011. That's the day after Joel's first birthday.

I feel like NOTHING is happening. No one has looked at his eye for a month, I have no direction for where it's all going. I don't know if we'll end up back using the lens, getting a conformer, a coloured contact. I just have no idea what the next step will be.

As for his eye, the infection is clearing up. We are still using drops and I'll just keep using them to make sure nothing comes back. I have also noticed his eye is starting to shake a bit. I'll be glad to go back and see someone at the hospital before I see Dr Lam privately, I know that's an appointment I'll be able to get.
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