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, July 12, 2010

7 days post op check up

It went as well as we could hope for. He didn't have to have another operation today although there is still a lot of blood in his eye so we have to go back on Thursday and get that checked out again. Andrea couldn't get a pressure of his eye, she mucked around so much with the guage and Joel just got so angry (so did I). She's worried about glaucoma because he has been so unsettled and a bit miserable still. At night he is worse, but he is also getting teeth so it's hard to tell what bothers him. The pressure in his eye or the teeth. Hopefully Dr Lam can see him on Thursday and do the pressure test properly. If he has high pressure they'll operate on Friday. More waiting.

Rich finally offered to help me around the house this afternoon, I think he realised how hard last week was for me. I was trying to clean up the kitchen, Joel was crying and Annalise wanted something to eat and Rich asked if there was anything he could do. I just wanted him to hold Joel so he did and even that tiny bit made a difference. I really struggled last week. I had so many people helping - making meals, looking after Annalise, calling to make sure I was ok - and it was still hard. I missed Annalise so much, that was the worst part of it. I had no time for her or with her and it broke my heart. Last night when I put her to bed she asked me to lay down next to her until she fell asleep. Her love tank was running on empty. I stayed with her for ages then Joel woke up crying and I had to leave her. That's the hardest part. I don't want her to think that she comes a poor second to Joel, I want her to know she's my absolute number one angel and I love her so much but it's just SO hard spreading myself that thin for both of them and even thinner when Rich wants time with me. I felt like last week there wasn't enough of me to go around and emotionally I felt so drained. I cried every time someone asked how I was. I just don't know how to do it all.

1 comment:

  1. Tracie, I really feel for you. I want you to let you know all Mum's feel like they don't have enough time for their kids. Don't think that this will make Annalise think that she comes second, try and think of the positive. It will teach her to be compassionate to other's needs, and independent, and strong. She will know you love her, how can she not?