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, June 16, 2011

EUA rebooked

We couldn't do Joel's EUA and take the impression for his eye because he had an ear infection and was just really sick so the doctor suggested maybe putting it off until he could handle the GA a bit better. It's been re booked for the 30th June. Now he has sprained his little foot, I have no idea how. He is constantly tripping and falling, more so than a toddler with perfect vision. He seems to struggle with depth perception a bit; stairs and small steps are a hurdle. He has learnt to do some other things way before his sister though, he can ride a little 3 wheel bike like he's been doing it for years and has absolutely no fear of climbing, getting down is he problem though, He just can't seem to work out how far he has to drop, whether it's 10cm or 100cm. His latest bruise on his forehead is from dropping way too far onto the floor, face first. I was worried about his foot because he was limping and I thought I'd better take him to get it checked out as soon as I could because if I left it and it was fractured and they looked at the bruises on his head I could be in trouble! Poor little guy looks like he's been beaten up! He's such a trooper though, he'll just keep trying things until he works it out and I really try not to do too much for him now because I don't want him to grow up thinking that he can't do all the same things as all the other kids. He is getting cheekier by the day too, makes me laugh all the time. We have finished with the Maxidex drops and his eyeball is yellow and brown, like an old bruise. I have heard that hyphema's can cause staining of the cornea and I am pretty sure that's what's happened this time, I doubt we'll ever see his iris and pupil again.

We have also been to see a geneticist, I have a letter fromt hem about what they think about his PHPV so I will try to scan it in and post it for those who are interested in any genetic link.

1 comment:

  1. That sucks... I hate talking yourself into being calm about something coming up and then the docs can't do it that day. Then you have to dread it all over again. I hope he gets to feeling better. I have heard that ear infections can also cause some balance issues. I don't know that for a fact. I don't know where I even heard it. He has such a cute smile. What a brave little boy!