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

Sunday, August 29, 2010

I've noticed something in his eye

On the left side of his iris, there are little white lines that go into the pupil. I have no idea what this could be. I don't know if I'd be able to see scar tissue if it has come back, if that's what it is. His last lot of Atropt drops were Thursday, he's due for another lot tomorrow. They are keeping his pupil large to try to prevent the scarring from coming back.

The lines look like they are part of the iris. It's really hard to explain and really hard to see. I can only see if when I look at his eye from the top, like if he's on my hip and I look down and him, then I can see them. It looks like there's 2 lines.

I am worried about it. Of course I would be, I'm his mum. I just don't want anything else to be wrong with the eye. We're not supposed to go back to PMH for another 3 weeks or so but I am going to ring tomorrow and see if I can get in on Thursday. Starting to wish I just took that private appointment for 7th September when I had the chance.

He's been really unsettled too, rubbing his eye a lot. I've been up at 4am with him most mornings after waking up 3 times during the night. See this is the thing, it could be just teeth that is keeping him up, it could be a sore tummy from the food because he's just started on solids. It's so hard not to think that it's his eye every time he cries. That it's hurting him or the pressure is too high or whatever.

He has started really crawling now too, he started commando crawling and within a week is really trucking along. He's very quick. It has made it more apparent though that he can't see out of that left eye, he has cut his cheek, hit the left side of his face on the corner of the tv unit and smashed his mouth on the side of the table making it bleed. All on the left side.

In the meantime, I'll just keep up the prayer and just know that this is God's will.

Wednesday, August 25, 2010

Haven't put the lens in, had healing prayer

I haven't put his lens back in. I tried to do it but man, he has gotten sooo much stronger since I did it before! It was so hard on my own, he just got really angry and frustrated so I stopped. I spoke to Rich about it and he said to just leave it, don't put it in so I haven't. I see the lens every time I open the cupboard though.

His eye looks like it's getting worse, like getting darker in colour. There's no light getting to it but in Jesus name, there will be. Our church held a healing service this morning so Rich took the day off work and we went and got some awesome prayer for Joel. I really believe that God is healing Joel as we speak, there are things going on behind his eye that we can't see. God is clearing and draining that blood that's stopping the light form getting in, I just know it.

I still feel sad when I look at other kids, even adult men, with their perfect eyes and think "Joel will never look like that" but it's getting easier to handle it.

There was a guy on tv yesterday who has this bionic eye, he can't see out of it but it's got a camera in it and it lights up red like the Terminator. Great sense of humour too, I've been meaning to google it to find out more about him.

Tuesday, August 17, 2010

I think I might start with the contact lens again

So I have been thinking about it and I think I might start putting his lens back in. It's been a month since his third surgery, his eye has healed and we are down to 3 times a day Predefrin Forte drops. He is slowly being weaned off those, next week we use them twice a day then the week after, just once a day. Two weeks after that we go back to PMH. It just seems like a long time to wait to see if we can use the lens again, this time is so critical for his vision, if any, to develop. We are continuing to use the Atropt twice a week to keep his pupil dilated to try to p;revent scar tissue from forming again.

I will speak to Rich about it, I know he will just tell me to do what I think is right. I'll pray on it and see what we can come up with.

Some times of the day his eye looks great, other times it is so dark and turns out or in. His pupil is still a really big teardrop shape. I am still believing he will see and praising God for the amazing little boy he is.

Thursday, August 5, 2010

Check up after third op - 18 days post op

Joel's pressure has dropped from 30 to 15. This is just awesome. I haven't been using the drops that Andrea gave me either. I got to see Dr Lam yesterday as Andrea has left PMH. They have replaced her with a guy about my age, who is, shall I say, very good looking haha. Dr Lam was GREAT. He is sucha brilliant doctor, I can't fault him at all. He said the pressure had gone down and I said that was a miracle because I wasn't using the drops and he said "keep praying". He told me never to give up hope that Joel will see out of that eye. He also said that if worst comes to worst, he wouldn't have a plastic conformer, he would give Joel a soft contact lens with a painted eye on it that was bigger than his PHPV iris so as to be the same size as the good eye. We don't have to go back to PMH for another month.

I am back to feeling so relieved, like I was after the first surgery was done. We are back to normal around here - the only thing is the drops we still use to keep the inflammation and infection away after the surgery. Apart form that, we've got another month before we even have to think about worrying.

In other Joel news, he has 5 teeth and a LOAD of snot. Poor little bugger has a cold, so he's been really clingy but oh my gosh do I love his cuddles. He also has said his first word - "hello". Clear as day. Gotta love him.

Off to church tonight and there will be a praise report going in for sure. Glaucoma has nothing on my God. My God is so much bigger than this and His plan for Joel is awesome.

Wednesday, August 4, 2010

Another check up

We are off to PMH again today. Before that I am taking Annalise to the park for a picnic.

Really praying for good news (or at least no bad news). Joel has been super unsettled lately, he has a cold, had his 6 month needles and cut two more teeth all in the space of 3 days. He hardly slept yesterday but he did sleep from 8pm - 4am last night so that's good. He was in sucha good routine before the second operation, we've gone so backwards with everything. He is all over the place. I really hope I can get him back into some sort of routine fairly soon.

His eye looks the same, not much difference there.