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".

traciereinikka@hotmail.com

Perth, Western Australia







Friday, January 25, 2013

EUA and new prosthetic

Joel has been under another GA and had another mould made of his eye. The old eye was rubbing and causing a lot of irritation and he just flat out refused to wear it. The new one is taking some getting used to. He has had a fair bit of irritation from the new one and we are taking things really slowly. There's some new pictures of him on the blog :-)
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4 comments:

  1. UnknownJanuary 25, 2013 at 7:27 AM

    The prosthetic looks really good... He is so cute in the pic laying the grass. He looks so happy and grown up. Tiny tear. Time goes fast.

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  2. KittynoahJanuary 25, 2013 at 6:34 PM

    So handsome! I hope you find a kindy program for him to go to (I am guessing that is like our preschool here in the US). He looks so grown up in the new pics! Thanks for the update!

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  3. JanetAugust 19, 2013 at 3:13 PM

    Hi, Just found your blog. Found out 3 days ago that our daughter has PHPV, already had microphthalmia and nystagmus. Her cornea is ony a 1/3rd the size of a normal one, so surgeons can do not have enough room, are able to see into her eye enough to do any surgery. Her pressure was only 16, and will start drop, she also has a cataract forming, which will inevitably be what takes her vision. Based on the past year, she will be totally blind in about 3 years. Hope your cute boy is doing well!

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  4. UnknownJanuary 11, 2015 at 10:26 PM

    Informative blog for me. Keep sharing.

    www.artificialeyeco.com

    ReplyDelete

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