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

Tuesday, July 13, 2010

9 days post op - pics added

Not much to say today.

Feeling a bit sad about tomorrow, just really hoping it goes well.

I've been to mums this morning, she said we can never stop praying for Joel and that she prays every day. I wish I had her faith, sometimes it alludes me. Sometimes I pray so much that I get goosebumps and other times I feel like what is the point. If God gave me Joel to test my faith, He is achieving His goal.

I just feel really down about it all today. I took heaps of photos of him yesterday and looking at them tody just makes me so sad. They only look good in black and white, that way you can't see how bad his eye looks. I feel like I've become that mum who other mums think of and are glad it's not happening to them. I honestly never thought it would happen to me.

Til tomorrow.


  1. Awww Trace... you are the mum we all wonder if we would have the strength to be!!! You and little Joel are in my thoughts always and I'll be checking regularly for updates tomorrow. Your mum is right you know :) Big Hugs xxx

  2. I agree with Mel. Reading your blog doesn't make me think I'm happy to not be you or in your situation, it makes me wonder if I'd be as strong as you if I was in the same situation and honestly I don't know if I would be. You're amazing.