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

Wednesday, May 19, 2010

Today is a much better day

This morning I got the lens in fairly easily. I wrapped him up in his big sheet and put him on his play mat with his feet facing the tv so he was looking down and I could put it in much quicker. He didn't even cry :-) So proud of my little man, he's just the best.

The hospital were supposed to call me this week with his next appointment time but they haven't yet. I called yesterday and they'd gone home so I called back today but no one answered. They are so busy and understaffed. They do such an amazing job with all these kids coming through. In January they saw something like 8,000 kids. Not just for Opthamology but also for other problems like hearing and neurology. I'll try again this afternoon.

After the hospital I'll go past Ezekial again an get his Optometrist to make sure the lens is all ok.

Annalise is at Kindy today, it's only her second time but she loves it. I am so glad. I am so happy she has something that's just "hers". I seem to spend so much time with Joel she misses out. Tomorrow we are making a herb garden together so I think she'll love that.

I have noticed that Joel sleeps a lot more when she's not here, must be the quietness in the house!

I am really hoping that my writing about the ups and downs of PHPV is helping other parents and giving others an insight into this rare condition. 4 months ago I knew nothing about eyes. It's funny how quickly you can arm yourself with information when you have to.

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