Decisions to be Made

William and I went to see Dr Small who did his original surgery when he was 7 weeks old. I like Dr Small he seems to take the time to listen and the questions I ask he always gives an answer. Anyway we talked about eye alignment surgery and he has suggested another option which is: 1. doing surgery early rather than later (Dr Maslin has talked about doing it at 14 months) 2. doing the eye alignment on his good eye (i.e. cut the muscles in this eye to make the two eyes look straight instead of the micro eye). 3. Then use Atroprine Drops in his good eye to blur the vision to make the micro eye work (like using a patch however the good eye can still see something even tho it is blurry so it would be like training the two eyes to see together at the same time. When we patch only one eye is working) and hopefully somehow get the two eyes working together which is a bit of a long shot but we could give it a try. Now it seems simple enough BUT the thought of operating on his good eye does scare me as I'd HATE it if something drastic happened and then he lost vision in that eye!!! And when I read about the Atroprine Drops that freaked me out as one drop on a child's tongue can stop the heart beating! I'm really not sure what to do, we make all sorts of decisions for our children in their young lives but this one is so difficult. Having monocular vision would be fine and having some sight out of the micro eye just in case something happened to the good eye is a bonus. So I'm not sure we want to muck around with the good eye - just in case!!! Anyway Dr Small is calling Dr Maslin to talk about this and then they'll get back to us! No doubt I'll have lots of questions next time I speak to either one of them.

EUA - 20th October 2010

William had his first EUA today and the results were all good. His little eye has grown in proportion with his good eye so its now measuring 11 mm and the good eye is measuring 12.5 mm. When we had them measured at his last operation his little eye was 9.5 mm and his good eye was 11 mm. The pressure in his eye is 8 which is good. He will also be getting a new contact lens with which will have a refractive power of +26 so he will have dropped 3 points from a +29. The only sad news is that we'll have to up his patching time to 50% of his waking hours. We have been patching him 2 hrs a day because his little eye kept on becoming dominant but now they've said lets try 50% of waking hours and then maybe 80% - arghhh! But all in all good news and now I'm trying to get him to sleep!!!! Hope he sleeps all night I feel shattered after an early start to the day and waiting around in the hospital for half a day!

It's Going to Be OK

I haven't posted in awhile as I've realised that in the last month or so I have come through my grieving and come to the realisation that William is really going to be OK! I don't go to bed anymore and think and cry about his eye and how unfair it is for him! I don't ring my mum every day to talk about it. I don't constantly stare at his little eye. I don't search the web looking for more info on PHPV or visit the PHPV Yahoo Health group website every day - I just feel a big weight has been lifted off my shoulders and I feel alive again! William is rolling around all over the place and reaching all the milestones that the girls did about the same age and I think that's part of it. Seeing him slowly growing up and doing things makes me realise he can do things and having just the one eye won't hinder him in most of the things he will embark on in life! He's not just a baby lying there not doing a lot. What a relief. He has cut two teeth and he looks just adorable, I love him so much and can't stop kissing him and holding him all the time, that's because he's my last baby and I'm making the most of these precious moments!