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

Friday, June 18, 2010

More praise

Today Joel was patched and he reached out and grabbed a big fluffy teddy. He smiled while he did it too. It wasn't directly in front of him, it was to the left of his head.

I am so sure that patching him while he has the drops is the right decision.

I spoke to his Optometrist today and told him that I am sure he can see something and he told me to keep patching.

I was thinking about it too - I know the lenses are expensive and yes we could wreck it with these drops, but we can always pay for another lens, we can't pay for another eye.

The doctors may think that the mesh of scarring stops him from seeing, but we know differently. All the prayer is being answered, I just know it.

Praise God.


  1. You are so right, you can always pay for another lense you can't pay for another eye! Absolutely go with your gut instincts Trace!! You are amazing the way you are looking after him. He is one lucky little boy! xx