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, August 5, 2010

Check up after third op - 18 days post op

Joel's pressure has dropped from 30 to 15. This is just awesome. I haven't been using the drops that Andrea gave me either. I got to see Dr Lam yesterday as Andrea has left PMH. They have replaced her with a guy about my age, who is, shall I say, very good looking haha. Dr Lam was GREAT. He is sucha brilliant doctor, I can't fault him at all. He said the pressure had gone down and I said that was a miracle because I wasn't using the drops and he said "keep praying". He told me never to give up hope that Joel will see out of that eye. He also said that if worst comes to worst, he wouldn't have a plastic conformer, he would give Joel a soft contact lens with a painted eye on it that was bigger than his PHPV iris so as to be the same size as the good eye. We don't have to go back to PMH for another month.

I am back to feeling so relieved, like I was after the first surgery was done. We are back to normal around here - the only thing is the drops we still use to keep the inflammation and infection away after the surgery. Apart form that, we've got another month before we even have to think about worrying.

In other Joel news, he has 5 teeth and a LOAD of snot. Poor little bugger has a cold, so he's been really clingy but oh my gosh do I love his cuddles. He also has said his first word - "hello". Clear as day. Gotta love him.

Off to church tonight and there will be a praise report going in for sure. Glaucoma has nothing on my God. My God is so much bigger than this and His plan for Joel is awesome.

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