I've found some more interesting websites for anyone who'd like to check them out:
This one has stories of micropthalmia and anopthalmia (micro is when one or both eye/s is abnormally small- as in Joel's case. Anopthalmia is the absence of eye/s)
http://www.goldbamboo.com/pictures-t3799.html
Another blog with some good links to visually disabled youtube videos
http://www.caitlyns-story.com/
Another blog - this little boy has a slight cleft lip also which just reinforces my belief that the two (PHPV and cleft lip/palate) are somehow connected. Very frustrating, makes me want to go to medical school to learn more! There's just not enough on the internet about it:
http://www.andbabymakes4.com/?p=428
Video of a vitrectomy and lensectomy in a person with PHPV (bit gory for anyone with a weak stomach)
http://www.youtube.com/watch?v=phradRutgOU
I've posted this before, it's Miss Utah who has PHPV and a prosthetic eye.
http://www.youtube.com/watch?v=3qwJ0MeTH2s
A lady who I know on facebook, her blog about her little boy:
http://williamseye.blogspot.com/
Another mum's blog, love the pictures on this one
http://jennsconstantramblings.blogspot.com/
Great informative website for the medical side of it and has some great pics of eyes:
http://www.images.missionforvisionusa.org/anatomy/2007/02/persistent-hyperplastic-primary.html
Another mum blog:
www.babydebenham.blogspot.com
This guy is a PO, specialising in retinal issues, here's a link to his blog post about genetic testing for PHPV:
http://kidsretina.blogspot.com/2010/12/genetic-testing-for-unilateral.html
and I think that's it for tonight, I'll do some more in the next few days.
Thursday, February 10, 2011
Friday, January 28, 2011
Appointment to check up on pressure, bleeding etc
We had our appointment today to check up on how his eye is going with the drops. It definitely looks better and Dr Lam had a really good look in there and took the pressure and everything is great. Pressure is normal, ulcer is pretty much gone, bleeding seems to have calmed down a bit and the redness is gone. He's not rubbing it as much as he was before either.
Something I learned today - for all the parents putting drops in their kids eyes, Dr Lam said that even though they may rub their eyes after putting the drops in, the drops are designed to be absorbed fairly quickly so even if it seems like not much is getting in there, it is, and just rest assured they should be doing their job.
We have to go back again in 3 weeks for another check up then after that we are all set to get his shell. Very exciting.
Something I learned today - for all the parents putting drops in their kids eyes, Dr Lam said that even though they may rub their eyes after putting the drops in, the drops are designed to be absorbed fairly quickly so even if it seems like not much is getting in there, it is, and just rest assured they should be doing their job.
We have to go back again in 3 weeks for another check up then after that we are all set to get his shell. Very exciting.
Sunday, January 23, 2011
His eye is getting better
The drops are definitely working, the redness has gone down heaps and he's stopped rubbing it.
I've just added some more pictures of him today.
I've just added some more pictures of him today.
Thursday, January 13, 2011
Our last appointment with the surgeon today
I've just come home from our last appointment with Joel's Opthamologist. This is the private appointment I have been waiting for for the last 3 months.
Joel's eye has been red and swollen shut for 3 days, I've taken him to the GP and they prescribed Chlorsig (which I never filled because I know it's not an infection). It was amazing timing that this week has been a particularly "bad eye week", I will upload some photos when he wakes up but it is very similar to the pics I took in September. Today, the surgeon had a really good look in his eye (well as good a look as you can get with a squirming one year old - that's right - he's 1! Yesterday was his birthday, his party is tomorrow). I had to hold his arms across his chest and his head squashed into my body while Dr Lam used the magnifier to look right into his eye, all the while Joel just scream and screams. The screaming doesn't upset me anymore, it's something that has to be done and it is for his benefit to get as good a look into that eye as possible. His last operation was to drain the hyphema (blood filled eye) but it looks like his eye has heamorraged again and is full of blood once more. This is causing the pressure to rise and he is contantly rubbing it and it weeps. A lot. We have him outside by the pool with us and 10 minutes later his eye is tearing up and weeping. It is just so light sensitive. Dr Lam agreed Chlorsig wouldn't help and has prescribed us some steroid drops for the eye, so I will start him on those 4 times a day.
I did speak to Dr Lam about the prosthetic and he was extremely helpful. He is pleased that we have come through his private rooms as it takes the pressure off the public system. I am really disappointed in myself for not doing it before. Dr Lam has said that if Geelen (ocularists who will make Joel's new eye) can't get a good, proper mould of the eye that he (Dr Lam) is happy to do an EUA (Examination under Anethesia) to get a perfect mould of the eye and also test the pressure. This will give Dr Lam a chance to have a proper look, to really see what is going on with the eye, so that any indicators of it having to be removed down the track can be identified. His pressure today was very high, but Dr Lam puts a portion of that high figure down to Joel screaming and resisting while we were holding him trying to get a good reading.
This is a great blog about a lady whose 4 year old son has what Joel has, his eye was removed today:
http://jennsconstantramblings.blogspot.com/
So, all in all, a good outcome. I am pleased that I know he has more heamoragging and that we can treat it and make him more comfortable. It still breaks my heart that he goes through all of this, I always wonder what would have happened if we never did the surgery on him, but what's done is done and I know that as his mum Idid do what I really thought was the best thing for him. I am happy that Dr Lam has offered to do the EUA, he has also said that we should go straight for the glass eye and not try to paint over Joel's old contact lens. I just need to make the appointment with Geelen and get that happening. Dr Lam wants to see us in 2 weeks, our next appointment is Friday 28th January.
Thanks for reading and caring about Joel. He took his first step in Dr Lam's office this morning too :-)
Joel's eye has been red and swollen shut for 3 days, I've taken him to the GP and they prescribed Chlorsig (which I never filled because I know it's not an infection). It was amazing timing that this week has been a particularly "bad eye week", I will upload some photos when he wakes up but it is very similar to the pics I took in September. Today, the surgeon had a really good look in his eye (well as good a look as you can get with a squirming one year old - that's right - he's 1! Yesterday was his birthday, his party is tomorrow). I had to hold his arms across his chest and his head squashed into my body while Dr Lam used the magnifier to look right into his eye, all the while Joel just scream and screams. The screaming doesn't upset me anymore, it's something that has to be done and it is for his benefit to get as good a look into that eye as possible. His last operation was to drain the hyphema (blood filled eye) but it looks like his eye has heamorraged again and is full of blood once more. This is causing the pressure to rise and he is contantly rubbing it and it weeps. A lot. We have him outside by the pool with us and 10 minutes later his eye is tearing up and weeping. It is just so light sensitive. Dr Lam agreed Chlorsig wouldn't help and has prescribed us some steroid drops for the eye, so I will start him on those 4 times a day.
I did speak to Dr Lam about the prosthetic and he was extremely helpful. He is pleased that we have come through his private rooms as it takes the pressure off the public system. I am really disappointed in myself for not doing it before. Dr Lam has said that if Geelen (ocularists who will make Joel's new eye) can't get a good, proper mould of the eye that he (Dr Lam) is happy to do an EUA (Examination under Anethesia) to get a perfect mould of the eye and also test the pressure. This will give Dr Lam a chance to have a proper look, to really see what is going on with the eye, so that any indicators of it having to be removed down the track can be identified. His pressure today was very high, but Dr Lam puts a portion of that high figure down to Joel screaming and resisting while we were holding him trying to get a good reading.
This is a great blog about a lady whose 4 year old son has what Joel has, his eye was removed today:
http://jennsconstantramblings.blogspot.com/
So, all in all, a good outcome. I am pleased that I know he has more heamoragging and that we can treat it and make him more comfortable. It still breaks my heart that he goes through all of this, I always wonder what would have happened if we never did the surgery on him, but what's done is done and I know that as his mum Idid do what I really thought was the best thing for him. I am happy that Dr Lam has offered to do the EUA, he has also said that we should go straight for the glass eye and not try to paint over Joel's old contact lens. I just need to make the appointment with Geelen and get that happening. Dr Lam wants to see us in 2 weeks, our next appointment is Friday 28th January.
Thanks for reading and caring about Joel. He took his first step in Dr Lam's office this morning too :-)
Tuesday, November 30, 2010
We are all set to get a prosthetic eye
I have met with the Registrar at PMH and he has spoken to Joel's surgeon and they are happy for us to proceed with getting a prosthetic.
On one hand I am really happy that Joel will be getting an eye to help his bad eye look a bit more "normal". On the other hand I am a tiny bit sad because it's basically saying he will never see out of that eye. I am starting to come to terms with that though, I have probably dealt with it as much as I can and have accepted it. Because the hospital is happy for us to go ahead with the prosthetic, they will cover the cost. We just have to wait for them to send a letter to Geelen and then we can meet with them again.
Here is a link I found to a website with lots of pics of kids and adults with shells.
http://www.maparentsupport.com/prosthetics_and_ocularists
On one hand I am really happy that Joel will be getting an eye to help his bad eye look a bit more "normal". On the other hand I am a tiny bit sad because it's basically saying he will never see out of that eye. I am starting to come to terms with that though, I have probably dealt with it as much as I can and have accepted it. Because the hospital is happy for us to go ahead with the prosthetic, they will cover the cost. We just have to wait for them to send a letter to Geelen and then we can meet with them again.
Here is a link I found to a website with lots of pics of kids and adults with shells.
http://www.maparentsupport.com/prosthetics_and_ocularists
Saturday, November 13, 2010
Anterior Chamber Hyphema
After Joel's second surgery, he developed an Anterior Chamber Hyphema and then had a third operation to drain the blood from that. I believe the hyphema was caused by the surgeon pulling part of the iris away during the second oepration. The blood that went to the back of his eye, caused by the complication from the second op, is what is preventing light from getting through and causing his blindness.
I just can't seem to get over the fact that it happened. That an experienced surgeon would make, what seems like to me, an elementary mistake. I have done a lot of research into the rate of this sort of complication and it is very small. This is all leading me to question whether or not our preferred surgeon, the one we requested through our private health insurance, is actually the one who did the operation or if the Registrar who we saw in the weeks leading up the operation was the one allowed to do this to my baby boy's eye.
This is some information I have found on the anterior chamber hyphema.
http://emedicine.medscape.com/article/1190165-overview
Last week, I spoke to a different Registrar at PMH to ask what they believe the next step should be. They agree that he should get a prosthetic eye which on one hand is good because that means that if we are referred back to the Ocularist by PMH, they will cover the cost of the eye. On the other hand, it's NOT good. This means that we are giving up on any hope of him getting any vision from that eye, for it to heal and look better. I know it's been ages since his last operation but I have found myself hanging onto some hope that his eye will just one day look exactly like the good one. I know it's not going to happen but there is a part of me that doesn't believe it. I know God can heal him but then I feel like I am being some sort of religious freak by keeping that faith. It's so hard. If I cover the eye with a fake eye, how will he ever see? It won't be getting used at all.
We are going back to PMH in the next couple of weeks and I am going to ask for Joel's medical records. I want to know who did that surgery and I think once I know that I will be able to put all my worries to rest and move on with the next step.
I just can't seem to get over the fact that it happened. That an experienced surgeon would make, what seems like to me, an elementary mistake. I have done a lot of research into the rate of this sort of complication and it is very small. This is all leading me to question whether or not our preferred surgeon, the one we requested through our private health insurance, is actually the one who did the operation or if the Registrar who we saw in the weeks leading up the operation was the one allowed to do this to my baby boy's eye.
This is some information I have found on the anterior chamber hyphema.
http://emedicine.medscape.com/article/1190165-overview
Last week, I spoke to a different Registrar at PMH to ask what they believe the next step should be. They agree that he should get a prosthetic eye which on one hand is good because that means that if we are referred back to the Ocularist by PMH, they will cover the cost of the eye. On the other hand, it's NOT good. This means that we are giving up on any hope of him getting any vision from that eye, for it to heal and look better. I know it's been ages since his last operation but I have found myself hanging onto some hope that his eye will just one day look exactly like the good one. I know it's not going to happen but there is a part of me that doesn't believe it. I know God can heal him but then I feel like I am being some sort of religious freak by keeping that faith. It's so hard. If I cover the eye with a fake eye, how will he ever see? It won't be getting used at all.
We are going back to PMH in the next couple of weeks and I am going to ask for Joel's medical records. I want to know who did that surgery and I think once I know that I will be able to put all my worries to rest and move on with the next step.
Tuesday, October 26, 2010
Don't be discouraged
I've been thinking a lot about how things have gone with Joel. When we first started on this PHPV journey, I was sure he would be one of the "lucky" ones and get great vision from his eye, it would look as normal as possible, it would grow and we'd have minimal trouble with it.
The fact is that we have had a bad outcome from our situation. He's had 3 operations and still nothing and the surgeries have made his pupil very misshapen and his eye black and unseeing. It is not a good outcome.
I just don't want any other parents who read this to be discouraged. There HAS to be good outcomes with some PHPV kids. Why not yours? Why shouldn't your baby be one of the miracle outsomes? Keep believing for that. I've seen photos of some and read stories of others who have had amazing results. Just because we haven't had the dream outcome we wanted, doesn't mean that your child won't get that, that they may be able to see, their eye will look and function as normally as can be expected with a birth defect and that people may not ever notice there is anything wrong with their eye.
And, you know what? Even if they DON'T get the outcome you want, they will be fine. You will be fine. Gradually you will come to an acceptance about things and learn to love that little eye staring blindly back at you. It's so easy to love a baby when they are "perfect" but when you have to deal with a birth defect and the grieving process that goes along with that, that is when you can really feel and define unconditional love.
The fact is that we have had a bad outcome from our situation. He's had 3 operations and still nothing and the surgeries have made his pupil very misshapen and his eye black and unseeing. It is not a good outcome.
I just don't want any other parents who read this to be discouraged. There HAS to be good outcomes with some PHPV kids. Why not yours? Why shouldn't your baby be one of the miracle outsomes? Keep believing for that. I've seen photos of some and read stories of others who have had amazing results. Just because we haven't had the dream outcome we wanted, doesn't mean that your child won't get that, that they may be able to see, their eye will look and function as normally as can be expected with a birth defect and that people may not ever notice there is anything wrong with their eye.
And, you know what? Even if they DON'T get the outcome you want, they will be fine. You will be fine. Gradually you will come to an acceptance about things and learn to love that little eye staring blindly back at you. It's so easy to love a baby when they are "perfect" but when you have to deal with a birth defect and the grieving process that goes along with that, that is when you can really feel and define unconditional love.
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