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

Sunday, July 25, 2010

We declare

Just downloaded We Declare by Equippers Church to my Iphone. Loving it. They were the guests at our church this morning, amazing amazing worshippers. So changed by having them at our church, so blessed and incredibly grateful to have been able to experience them. So in love with Jesus and I just know that He is protecting Joel.


  1. Hey H. Just caught up on the last week of your life. whatever happens joel is so incredibly lucky to have you as his mum, your amazing...
    keep on truckin, stomps xox

  2. Thanks Stomps, you're awesome for reading the blog. Thanks so much xxx

  3. Hi Tracie,

    I just caught up on the last several posts, and just wanted to take a few minutes to write. I am so sorry for everything you are going through.

    I have 4 children, 4 and under, and sometimes it's just so hard to deal with life. I totally get what you mean about it not just being the PHPV, but everything else that goes with. Not getting to spend time with the other children, seeing your baby in pain, and worrying about the future. I've just started out on this journey, and the doctors are hopeful for my 6 month old, but it's still so hard. A few things I've learned/am trying to remind myself of so far are:

    1. God loves me and my family. This is no accident what happened to my child and He allowed it to happen. Scripture teaches me that He does everything for His good and our good. That's a hard pill to swallow, but I do believe if my daughter never sees out that eye, it will be because ultimately it was for our, and her, good.

    2. Like you mentioned, I too, spend not enough time on my knees or trusting. While research and doctors are good, they shouldn't be the be all and end all of my time.

    3. It gives me a better idea of how God deals with me. Everytime my daughter cries when I do something for her that she doesn't like, it's hard. She doesn't know that it's for her own good. That's how God shapes and molds us to His Son's likeness.

    My prayer for Joel, as it is for Lily, is that he would be able to see God in ways we cannot.

    With love,


    Revelation 21:1-4

  4. Wow, Jennifer. Thank you. I so needed that today xxxx