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

Wednesday, July 7, 2010

Getting back on track

I think 2 days of feeling sorry for myself and my little boy is plenty, time to get myself sorted and get on with things.

He slept all day yesterday, from about 9 until 6. Annalise was with my mum. He woke up a few times in between having a bit of a cry but I could settle him fairly easily. We slept on me all day, if I put him in his cot he would wake up after 2 or 3 minutes and scream until I picked him up. So, needless to say, nothing got done and I didn't eat much. This is one of the reasons I am so grateful for the amazing girls in our church. They are doing our meals for us until Monday. It is such a blessing.

Rich went to the movies last night. I know he can't handle seeing Joel in pain, it is hard but it's not forever and it's to help him to see and try to give him as much chance as possible at vision. He left at 5:30, leaving me to put Annalise to bed on my own and deal with Joel. I understand it's hard for him but it's hard on all of us. Annalise wouldn't stay in bed so I got angry at her and she just laid on her bed and cried. She told me off for throwing her toy yesterday too. She said I was "mean". I was so upset, she was in there crying and Joel was crying and I was just standing in the lounge room with Joel on my shoulder praying to God to help me. Getting angry at God, feeling sad, over whelmed, angry at Rich, why Joel, why our family, poor Annalise, why can't he just be well, how am I going to do this for the next 10 years. So many things going through my head and only one man to give them to. Thank God for God. As it turns out, the tickets Rich had for the movie weren't valid and he was home beore 7 ;-)

So today, we are off to the hospital at 2. Annalise is with mum again, I miss her a lot. Joel has settled in his bassinette for the first time since Tuesday so I've had a shower and breakfast and I'm feeling better about things.

I just pray that today the bleeding has stopped and he doesn't have to have another operation tomorrow.

No comments:

Post a Comment