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, July 22, 2010

Got a phone call

From the hospital, they have cancelled the clinic for Monday.

I have to wait til Thursday. I don't know what else to do, who else to call. I might try the Optometrist who gave Joel his contact lens, that's the only person I can think of.

I am taking A and J to the park to feed the birds today. Annalise is so excited. She said "With mummy? Mummy's not taking Joel to the hospital?" She's so used to me leaving her places now. I told her that I was staying with her all day and she went and put her new sneakers on with her pajamas and said "let's go!" It was 7:10am, a bit early for me.

Joel woke up again at 3am and was up until 5. I tried to put him in his own room but he just cries, he wants to be in the bed with us. I don't know if the crying is because his eye hurts from laying down for so long (7pm until 3am) or if it's teething. Another thing I don't know! And to think I was expecting the second time around to be easier. Two kids IS easy. Without Joel's issue with his eye, I can honestly say there would be very few moments where I would be overwhelmed. I know that if it wasn't for the problems we are having with his eye, we would be planning a third baby for sometime next year. As it is though, I am done at two.

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