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

Monday, May 17, 2010

Bad day

Well today is a bad day.

Every day, Joel wakes up at 7. I feed him, give him a bath, feed him again then try to put his lens in on my own until he gets tired at 8. Only two times have I been successful in doing it on my own. If I can't do it between 7 and 8, when he wakes up again at 9:30, I have another go and if I stil can't do it I drive to my MIL's place and get her to restrain him so I can put it in.

Today I tried between 7 and 8, then again for about 15 minutes from 9:30 - 9:45. I feel like I am NEVER going to be able to do it on my own :-( I ended up in tears, yelling at Annalise, angry at myself, and feeling pretty useless.

Yesterday I called another mum who has a daughter who wears a contact and asked her how she went about doing it on her own. She told me a big tip is to keep my nails really short, so short that there is absolutely no white nail showing. So yesterday, I cut off all my nice long nails. It doesn't make a difference. It's still impossible to get the lens into the eye of a screaming, wriggling 4 month old. She told me to get Annalise to distract Joel so he's looking down and that way I can slip the lens into his lid easier. All that happened was me and Annalise cracked our heads together as I was leaning over Joel to put the lens in and she was leaning over him to sing to him. It's just crap. It's so crap.

If I don't put it in, I can't patch him because he can't see without the lens. If I don't patch him, the chances of him ever seeing out of that eye are even more slim. It has to go in.

I am going to try it again and if it doesn't go in I suppose I will have to pack both kids into the car and drive to MIL's place again.

I just want to scream. Or cry.

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