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, July 28, 2011

Joel has his first prosthetic eye

At 3:30 this afternoon, we went to see the Geelen's to get Joel's first painted shell. It was all pretty straight forward: Rich sat in the chair with Joel on his lap and held him while Paul put the eye in. In expert hands, it took about 10 seconds to go in. Joel rubbed it a lot, it was still a bit cold but once it warmed up he was fine. After he'd stopped rubbing it and I got a chance to look at his little face, I cried. He just looked so normal. I hate using that term, "normal", because hey, who is! But he just looked like he would have if none of this had have happened to him. There are still a few adjustments to be made to the eye; the pupil is quite large and the eye looks down and to the right. But, it is an amazing improvement to the blood stained natural eye that lays beneath the prosthetic. Once the few changes are made to it, I really doubt anyone will know there is anything different about him. The eye makes his eye appear so much larger, basically as large as his right eye.

I have uploaded a few pictures to the blog, it was really hard to get one of him looking straight on towards the camera. The eye does look a bit off centre and the colour is perhaps a tiny bit too green in some lights but we are just so happy to finally be at this stage. It felt like we would never get here with all the surgeries, then the bleeding and waiting for his eye to settle down to a point where a prosthetic was even an option. We have to go back tomorrow at 9am and Paul will take the eye out and make the adjustments, unfortunatley Rich can't come to this one so I'm on my ownbut judging by the amazing way Joel handled it today, and the care that Paul and Jenny have for their smallest clients, I think we'll be fine. He has gone to sleep with his eye in tonight and hardly seemed to even notice it while we were at home. He was playing and wrestling with Annalise like he usually does. Nothing stops him!

Oh and we found out that the chair that Rich loved so much in the Geelen's office is 96 years old! There's a pic of joel and Rich sitting in it to the right --->

1 comment:

  1. Wow! That looks awesome.... YAY!!! for Joel!