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







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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