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

Thursday, July 8, 2010

Happy today

Joel seems to finally be happy again. He's smiling and laughing and farting like a trooper. My boy is back.

It's another day without Annalise today, she is going to visit her nanny. She slept in our bed last night and I missed out coz I was on the couch with Joel most of the night so he could be upright. I went in to our room when it started to rain really hard and just cuddled her. She let me cuddle her for ages. When the thunder came she said "Is it raining mummy?" and I told her "yeah, it is" and she just cuddled in more. I had Joel's head on my right shoulder and Annalise's head on my left and was thinking how lucky I am to have my two beautiful babies.

I'm still crying a fair bit, especially when I look at his eye. It's so bloodshot and red. He is really against having these drops put in, as soon as he sees the little white bottle he cries and turns his face into his shoulder. I know how important they are so I am holding him still to get them in. I do wonder what all this physical restraint is doing to his psyche. He has been held down to have lenses put in, to be anethetised, to get drips out and needles in, to be patched, now to have more drops in his eye...What are we doing to him. He's not even six months old yet and he's spent so much of every day being held down. That makes me sad.

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