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".

traciereinikka@hotmail.com

Perth, Western Australia







Thursday, May 13, 2010

Joel's Contact Lens

At our third or fourth hospital check up, Dr Lam looked into Joel's eye and said that he could see all the way to the back. This was AMAZING news because it meant that if Dr Lam could see in, Joel could see out. Light was getting to the back of his eye where it needed to go. I was so excited. I rang Rich to tell him and he was really happy too. This meant that we could get Joel fitted for a contact lens and start him on the road to seeing out of his left eye. We got a referral to Ezekial Optometrists, but again, had to wait a week to see them.

We went in and spoke about the lens, how it works, how you put it in, what it looks like. I was surprised at how big and thick it was. It is called a Rigid Gas Permeable lens and is like a curved round disk with 3 holes in it. It is made of a hard plastic and is almost invisible once it's in the eye. It was ordered for us and again, we waited 2 weeks for them to manufacture.

Finally the day came where we could take Joel to have some "practice" fittings of the lens. Rich took another day off work and we went back to Ezekial. Damon, Joel's Optometrist, told us it would most likely take the whole day to get the lens right. We got there at 9 and went into Damon's rooms.

He explained how to put the lens in. One of us would be the "restrainer" and the other one would be the "do-er". It was decided I would be the one to put the lens in because Rich has a weak stomach when it comes to these things and chances are I'd be putting it in more often than he would anyway.

We laid Joel down on the bench with a little folded up towel under his head.

Rich stood behind his head, while I leaned over him with the lens in my right hand.

Damon stood next to me and gave me instructions.

It was SO hard. Rich had to hold his little arms beside his head to stop him from moving his head and thrashing about his arms while I lifted his upper lid with my left hand and tried to angle the lens onto the white of his eye. Joel screamed. He squealed like a little baby pig. I just wanted to get it done, I just wanted to learn how to do this for my baby boy. After a few minutes of trying unsuccessfully to get it in, Joel's eye and the skin around it was red and he was really upset. Damon suggested we take a break and come back in a little while.

We walked around and I fed Joel and after about half an hour we went back in. This time I was determined to do it right.

We all assumed our positions again and I held his eye open and eventually got the lens in. It felt good to know that I could do it, I was just praying I'd get quicker at it. Damon had a look with one of his machines and said the lens was a bit too big for Joel and he'd have to reshape it so we went for another walk, got some lunch and after an hour, went back to Ezekial.

This time, it still took ages to get the lens in and it was my turn to try getting it out. Getting it out was far harder than getting it in. Joel screamed and screamed while Rich held him down and I clumsily poked and prodded my fingers into his eye. The lens is so slippery. Before you put it in you need to rub a conditioner over it, which is like oil so if you get any of that on your fingers, they just slide on his skin and you can't get his eye open. We got it out but then had to put it back in again to wear it home. Again it took ages. We ended up leaving at 3 in the afternoon with his lens and a stockpile of saline, conditioner and cleaner.

Every morning, his lens goes in. Every night his lens comes out. I am getting better at it every day. Some days it goes in really easily, other days it doesn't but overall, it's a lot faster than our first attempt. The hardest part is trying to do it on my own. 5 days out of 7, Rich has left for work before Joel wakes up so it's up to me to get it in. We have tried waking him up before Rich leaves but he was so upset at being disturbed that it was impossible to get him to open his eye. Most days I have to drive to my mother in laws house, or my mums house, just to get someone to restrain him so that I can fit his lens. I still try to do it every day on my own but haven't quite worked out how to be successful at it by myself every time.

1 comment:

  1. You two are really brave enough. Joel is lucky to have parents like you.

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