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 4, 2010

Surgery day

What a hectic morning! We've got the guys here fitting the new shower screen, Rich left for work about an hour ago and Annalise is begging to go to Granddad's house. I got a quick 2 minute shower in between bathing Joel and the shower guys arriving then I tried to put him down for a sleep but I didn't realise how noisy the ensuite would be lol. No sleep for him. He cut another tooth yesterday and there's one more coming, so he's almost got 4.

It's almost 9, I am dropping Annalise off at Granddad's at 10:30. Rich has called to say he has a cold and is going to the doctors at 11:50. We are meant to be at the hospital at 12. So it looks like I'm going by myself. I don't mind going there on my own so much, it's just the fasting part that hard for me because when Joel gets hungry and I'm holding him, well it's a lot harder than if Rich was holding him. Anyway. Man flu afflicts the best of them.

Joel's runny nose is gone but the chesty cough is still there.

Next time I'm here to post it will either be after surgery, or still before.


  1. I just wanted to thank you for your blog. My little girl was just diagnosed with PHPV - she is 5 months old. We travel to Miami in a few days to meet with the specialist there and find out what's next. It's been so helpful to read about you and your familys journey.

  2. Hi JM and thank you for reading my blog. I really hope it helps you somewhat on the journey you've just started. Congratulations on the birth of your little girl! I am sorry about her PHPV diagnosis, I can completely understand how you must be feeling (some of the earliest posts in this blog were about how devastated I was to learn of Joel's condition) and I really hope you get some great answers and support from your Specialists. It is a bumpy road but some kids sail through, so here's praying you little girl is one of them. I would love to hear of her progress, just comment on any posts if you get time. All the best and lots of cuddles
    for your baby girl xx

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