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, August 17, 2010

I think I might start with the contact lens again

So I have been thinking about it and I think I might start putting his lens back in. It's been a month since his third surgery, his eye has healed and we are down to 3 times a day Predefrin Forte drops. He is slowly being weaned off those, next week we use them twice a day then the week after, just once a day. Two weeks after that we go back to PMH. It just seems like a long time to wait to see if we can use the lens again, this time is so critical for his vision, if any, to develop. We are continuing to use the Atropt twice a week to keep his pupil dilated to try to p;revent scar tissue from forming again.

I will speak to Rich about it, I know he will just tell me to do what I think is right. I'll pray on it and see what we can come up with.

Some times of the day his eye looks great, other times it is so dark and turns out or in. His pupil is still a really big teardrop shape. I am still believing he will see and praising God for the amazing little boy he is.


  1. David's left pupil (his bad eye that he has no vision in) is also pear shaped...it has been like that for over 8 months now so I'm thinking it's permant...hopefully one day he can have a regular contact to put in that will make his pupil appear normal if he wishes...I'm still believing that he will have vision back in his left eye one day as well and prasing God for the amazing boy he is as well :) Hoping for the best for both our babies! Good luck...

    Shannah from PHPV yahoo group.

  2. Prasie God Shannah! Your David is so blessed to have you as his mum.

    Yeah his pupil is going to be like this for a while I think, it shows no signs of going round. His PO was talking about a soft contact that goes inthe phpv eye to make it look normal so that might be an option down the track :-)

    Keep on loving that gorgeous boy of yours! xx

  3. Awe thanks Tracie! I am the lucky one though to have him as my son! Even with vision problems he still does amazing...he compansates with for his left eye (although still not great vision) with his right...when he's walking using a tippy cup he puts it off to the side in front of his left eye so he doesn't trip! lol...he cracks me up every day and Joel will be just fine I know how hard it is (although we do glasses with David and not a contact...) as their mama's! Joels such a handsome little guy and seems SOO sweet and he's also lucky to have such a great mama!! :)


  4. Oh that's cool about the contact :) I am looking into getting it straightened since it goes in somewhat but Dr. Trese said to wait until about 5ish before he starts school. :)