I haven't posted in awhile but thought I had better do so now or else I'll forget everything. A few months ago we went into for a check up but William was not cooperating and Dr Maslin couldn't see what was happening with his eye at all so we had to be booked in for an EUA to get it checked out. His pressure in the eye was low so that was a relief and his sight was getting stronger so we have had a contact change and are now down to a +23 diopter contact lens. Then last week I had another appointment but Dr Maslin wasn't there and I had the registrar. I wasn't looking forward to it as I thought she wouldn't know much however the Registrar was really nice. She had been in with Dr Maslin when they did William's EUA and she said they can't believe how well he sees out of his micro eye and she said its all down to me and my persistence with patching so that was nice to hear. While in the consulting room she took the patch off him to watch his eyes she mentioned that his eye sight in the right eye must be very good as he flicks to look out of the eye sometimes so the brain must think the eye is worthwhile to look out of even though he's not patched. So the check up with well I thought. We did discuss reducing patching time but she wants Dr Maslin to see William and get his opinion on whether we can reduce it a bit so as not to disadvantage the good eye.
William is starting to walk which is so cute and he sometimes misjudges when to grab hold of the couch or my leg or some other object but thats to be expected I guess since he doesn't have binocular vision. I'm sure his brain will adapt over time.
Saturday, June 11, 2011
Sunday, February 20, 2011
Patching/Inserting Contact - 21 Feb 2011
We are currently patching William for about 60% of the day - so the patch goes on at about 7 am and doesn't come off until about 4 pm (he has two naps of about 1 1/2 to 2 hrs per day). He had started to pull the patch off and we'd go through about 3 a day but that seems to have stopped - for now. I believe patch pulling becomes more and more prevalent as they get older so I am storing up ideas from other mums what to do when you go through boxes and boxes of patches as they rip them off every time you put them on!
I've been thinking about what to say to all the kids out there that keep on asking what happened to his eye. It's easy to explain to adults but kids really just want to know what kind of accident he had. At the moment I just tell them that he had an operation and they look at me nod and move on but you can see they don't quite get that. One of these days (if I can be bothered) I'll try and explain that he was blind in one eye at birth and then the Drs operated on him and now he can see out of that eye as long as we patch the good eye. Seems so complicated and kids want a quick answer!
At the moment its getting harder and harder to put William's contact back in when we take it out for a clean. This morning I'm sure we've bruised his eye - poor little man. He fights us trying to hold him down and his little eyelids are sooooo strong - Jason pulls at the top lid I pull at the bottom and we try and pry it open 1 or 2 mm to slip the contact in. It takes a few goes as its not that easy to get in when he's trying to wriggle around and scream and cry. I can see this getting harder and harder before it gets easier.
We have also found out that William is allergic to a few foods. I tried him on egg a few weeks ago and a rash started appearing around his neck and chin. The ambulance arrived but the rash went away and that was that. I went to the doctor to get some blood tests done and they came back as allergic to Wheat and Cows Milk (low) Egg and Soy (Med) and Peanut (High). The Peanut thing is weird as I have been feeding him peanut butter sandwiches since he was 8 months old so not sure what's going on there. The Dr said not to worry about the milk and wheat though as it was such a low reading. We are off to see a pediatrician to find out if we should still feed him peanut butter sandwiches etc. Its interesting about Soy as I only drink Soy Milk and he stopped getting really bad excema on his cheeks when I stopped breastfeeding him - to think all this time I was poisoning him - argghhh!
William will be 1 year old in 2 weeks time and I find it hard to believe that a year has gone by since his birth. If someone had told me this time last year that I was going to have a baby that had one eye smaller than the other, was required to wear a contact, had to be patched every day and got stared at everywhere we went - I would have said - Nope I can't deal with a baby like that! But we have managed! Every week we have to take out the little contact and put it back in and every day as soon as I see my little baby I slap on that patch and get on with the day stares and all!
I've been thinking about what to say to all the kids out there that keep on asking what happened to his eye. It's easy to explain to adults but kids really just want to know what kind of accident he had. At the moment I just tell them that he had an operation and they look at me nod and move on but you can see they don't quite get that. One of these days (if I can be bothered) I'll try and explain that he was blind in one eye at birth and then the Drs operated on him and now he can see out of that eye as long as we patch the good eye. Seems so complicated and kids want a quick answer!
At the moment its getting harder and harder to put William's contact back in when we take it out for a clean. This morning I'm sure we've bruised his eye - poor little man. He fights us trying to hold him down and his little eyelids are sooooo strong - Jason pulls at the top lid I pull at the bottom and we try and pry it open 1 or 2 mm to slip the contact in. It takes a few goes as its not that easy to get in when he's trying to wriggle around and scream and cry. I can see this getting harder and harder before it gets easier.
We have also found out that William is allergic to a few foods. I tried him on egg a few weeks ago and a rash started appearing around his neck and chin. The ambulance arrived but the rash went away and that was that. I went to the doctor to get some blood tests done and they came back as allergic to Wheat and Cows Milk (low) Egg and Soy (Med) and Peanut (High). The Peanut thing is weird as I have been feeding him peanut butter sandwiches since he was 8 months old so not sure what's going on there. The Dr said not to worry about the milk and wheat though as it was such a low reading. We are off to see a pediatrician to find out if we should still feed him peanut butter sandwiches etc. Its interesting about Soy as I only drink Soy Milk and he stopped getting really bad excema on his cheeks when I stopped breastfeeding him - to think all this time I was poisoning him - argghhh!
William will be 1 year old in 2 weeks time and I find it hard to believe that a year has gone by since his birth. If someone had told me this time last year that I was going to have a baby that had one eye smaller than the other, was required to wear a contact, had to be patched every day and got stared at everywhere we went - I would have said - Nope I can't deal with a baby like that! But we have managed! Every week we have to take out the little contact and put it back in and every day as soon as I see my little baby I slap on that patch and get on with the day stares and all!
Saturday, January 1, 2011
15 December 2010
We went back to Wellington Hospital for a visit to Dr Maslin to see how William's eye is going on Wed 15th December and its looking good. Dr Maslin did say that he should have eye sight good enough in the Micro eye that would enable him to get a drivers licence so that was really exciting to hear. We also touched briefly on doing the eye alignment operation on William's good eye but Dr Maslin didn't even want to consider it and I'm thankful as I'd come to the conclusion that I didn't want anyone touching the good eye. So we discussed doing eye alignment surgery on the Micro Eye and hopefully he'll get it in the next 6 months depending on how busy the Eye Specialists are so I am (and not) looking forward to that.
He's almost 10 months old and has been rolling for a few months now but hasn't got up and crawled. I was wondering if it had something to do with his eye but NO I think I've got one big placid little boy! He's just delicious and we're so lucky to have this little man in our lives!
He's almost 10 months old and has been rolling for a few months now but hasn't got up and crawled. I was wondering if it had something to do with his eye but NO I think I've got one big placid little boy! He's just delicious and we're so lucky to have this little man in our lives!
Monday, October 25, 2010
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.
Tuesday, October 19, 2010
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!
Saturday, October 16, 2010
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!
Sunday, September 5, 2010
Contact Getting Harder to Pull Out
We are having a tough time getting the contact out now, it seems as though it is stuck on to the eye quite tight. It's Jason's job to pull it out as I haven't worked up the courage to do that yet so I hold William tight while he screams and screams and clamps his eye shut!! Jason has quite big fingers so getting in to his little microphthalmic eye to get the contact out is not that easy. The PO said at the last visit that we are due for a new lens with a different refractive power so it should be easier to get it out so hopefully we get that on the 22 Sept at our next appointment. By the time we have the contact out William is a screaming, yelling, crying mess! We both want to pick him up and cuddle him right away and it takes awhile to calm him down. I think Jason feels really mean having to do this, but I guess it has to be done!
Still haven't heard when William is due for his EUA, I think its suppose to be scheduled for sometime this month.
Other than that William is going to be 6 months old on 8 Sept, he's such a cruisey bubba! He's trying to roll but not that fussed as he's quite happy on his back looking around. I remember Lexie being a real late starter at rolling - I think it happened on her 6 month birthday while all the other babies in my antenatal group were almost crawling! I remember worrying that there may be something wrong with her but no she is fine. I guess with William I've got in the back of my mind that maybe something else is wrong with him because he had an eye problem. I did ask the PO if there could be anything else wrong with him but he said no as it only affected one eye, if two eyes had been affected then he may have had a different answer.
William is a very long and big baby! He's on the 97th percental of the plunkett graphs for both height and weight he must take after my grandmothers family as they were all 6 foot tall!
Still haven't heard when William is due for his EUA, I think its suppose to be scheduled for sometime this month.
Other than that William is going to be 6 months old on 8 Sept, he's such a cruisey bubba! He's trying to roll but not that fussed as he's quite happy on his back looking around. I remember Lexie being a real late starter at rolling - I think it happened on her 6 month birthday while all the other babies in my antenatal group were almost crawling! I remember worrying that there may be something wrong with her but no she is fine. I guess with William I've got in the back of my mind that maybe something else is wrong with him because he had an eye problem. I did ask the PO if there could be anything else wrong with him but he said no as it only affected one eye, if two eyes had been affected then he may have had a different answer.
William is a very long and big baby! He's on the 97th percental of the plunkett graphs for both height and weight he must take after my grandmothers family as they were all 6 foot tall!
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