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, September 20, 2012


Poor Joel has conjunctivitis. He can hardly see, but it is getting better, poor little guy. His eyes have swollen up so much. I wouldn't normally go to the doctor for something like conjunctivitis, but I did take him because it was so bad and it came on so quickly. Literally within a day he had gone from clear eyes to caked full of puss. He is on Amoxcillan and Chlorsig which is helping. He hates having his eyes cleaned out though, he will only let Rich do it. We're waiting to hear back about the kindy, I'm so hopeful that he gets in. He begs to stay at Annalise's school every morning and loves to play there for ages after school. I've for lots of things planned for them over the school holidays to try to keep him amused, he's in that stage of asking a million questions about everything! He is sleeping better at night now, finally. He only wakes up once, if at all, each night. It's good for me because I'm up with Imogen at about 2am, then Joel was waking up at 11pm and 4am. We have moved house while we build a new house and he has settled in to his new bedroom well. He is still the sweetest little boy, always cuddling and kissing imogen so I'm hoping she doesn't get conjunctivitis too.

Sunday, September 2, 2012

Kindy at the Guide Dog Association

I have been thinking about joining a playgroup for kids with vision impairment. I called up the Guide Dog Association after they came up in a google search. When I spoke tot he Receptionist, she said they didn't have a playgroup or know of one, BUT they do have a 3 year old kindy program. To say I was excited is an understatement! Joel is so ready for school, every day when we drop Annalise off he wants to stay, he even packs his bag every morning just like her and keeps saying "my school, mummy?" I was going to put him in the 3 year old kindy that was recommended to me by another mum but this program at the Guide Dog Association would be perfect for him. He will be 3 in January so I've filled out the forms and we're just waiting to hear back if he's been accepted. They also do a different program to help visually impaired kids, I guess it's kind of like vision therapy. I've filled out the forms for them to get all of his information from his surgeon so hopefully they can help him with that too. He hasn't worn his prosthetic in a while. He really objects to having it put in, like REALLY. He just never seemed to get used to having it done and most days, would go and lay on the floor for ages after having it put in. I had to restrain him and hold him down on the ground. I just felt like I am the one who is supposed to nurture him and love and protect him, and here I am every day, forcing him to have the eye put in. I really hope that he asks for it when he's ready, we've been talking about it and I've told him it's there and if he wants to wear it, he can. I always said that if it didn't work out with the eye, that's ok. He's still 99% oblivious to the fact he's different, sometimes he does look in the mirror and point to his eye and say "broken". A year ago, the thought of that would have sent me into floods of tears but now, it's just like :yeah, baby, it's broken but you're ok!" There was a disco at Annalise's school the other day and all the kids stood in a circle and stared at him. I felt so bad for him. It is so hard to see them all staring. Then they went up to their mums and were saying "that kid has a weird eye" and things like that. I wish their mums would ask what was "wrong" with it or something, instead of just saying "oh ok, go play". We have moved and the new school only has about 150 kids so everyone will know him eventually and it would be good for them to actually know what's gone on with him and why his eye looks like that.