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, June 23, 2010

Date for next surgery has been booked

It's Monday 5th July.

It's a good date because Rich goes to Melbourne for work from the 1st to the 4th of July, so he will be back just in time. The pre admissions lady will call over the next week to talk about how it will all go.

On the subject of surgery, I was so pleased the other day to have a win with our private insurance. The first surgery Joel had was supposed to be covered by our fund, MBF, but when we rang to confirm they said Joel wasn't covered for anything because I didn't call to add him to our policy within 8 weeks of him being born. I let it go at the time but after thinking about it for ages and having a friend say I should follow it up, I called them. It took about half an hour and lots of being put on hold while th lady spoke to her managers but they eventually came back and said that he will be covered because we have an exisiting family policy and there is no time frame to add another child to it. Joel's PHPV is considered pre-existing so they weren't covering anything to do with his eye, which meant for the next surgery we would have one of the students or Registrars doing it because PMH is a teaching hospital.

So between now and Monday week, I will just pray for my little man. God, heal him. Guide the surgeon's hand and be with our family through this next step of our journey. Give us wisdom and peace with the decisions we make for him and make his recovery as quick and painless as You can. We know that You are watching out for him and that You love him and we just pray that You will have your hand on Joel and heal his eye and make him see. Amen.

I haven't put his lens in today. It's getting really hard taking it out and putting it in all day. He is starting to get really angry when he knows it's coming and we were getting to a stage before where he was smiling when we were putting it in or out. It feels like I put the drops in, put the lens in, he sleeps, wakes up, feeds, lens out, drops in, sleep, wake up, lens in, feed, sleep, wake up, lens out, drops in... argh. It's too much for him. I will put the lens in when Rich gets home from picking Annalise up from kindy and we will patch him tonight when we have the time to distract and play with him.

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