Ryan was born on 4th April, 2005. Within moments of him being born I knew that something wasn't quite right with his eyes. All the midwives / doctors / nurses all assured us that it was ok, they'll open up in time. But unfortunately they didn't.
It took about 4 months before we finally got help from a local doctor who referred us to Dr Andrew Narita, an eye specialist, at Geelong Private Hospital. Dr Narita diagnosed Ryan with Blepharophimosis Syndrome when he was 8 months old. We were told that it was mainly cosmetic but that he would suffer symptoms such as watery eye's, blocked tear ducts and discomfort. Luckily for us Ryan has only really had problem's with watery eye's.
We were advised that corrective surgery was the best option but that it was best to wait until Ryan's face and leg's grew. The reason for waiting for the leg to grow is because a skin and tendon graft would be needed in one of the surgeries.
We have had to visit Dr Narita every 6 - 12 months since this initial diagnosis in order for him to assess Ryan's vision. We have been lucky again that his vision has been perfectly normal for a child of his age.
We have always tried to be very positive about this condition with Ryan. We didn't really mention anything to him about surgery until very recently. Ryan knows that his eye's are different but to him (and us!) they are normal. He has handled it very well despite the questions from his friends at school and people in general. I have found that is the very young and the very old people who are the most upfront with their questions. We have been asked why Ryan looks sleepy... why can't he open his eye's properly... is he asian.... etc etc I have at times handled these questions badly and have felt bad for Ryan, but he has taught me to be strong and that it is ok to just answer as honestly as possible.
OUR JOURNEY TO THIS POINT...
At this stage we were under the impression that surgery was going to be a lengthy and painful process for everyone involved. We made the decision in early 2009 to send Ryan to school early (at 4yrs 9mths old) so that we had some time up our sleeves in order to be able to have him repeat a year if necessary after or during his surgeries.
Ryan started school in 2010. He struggles a little academically but he is loving the social side of school! During his first school holidays he came up to me and wanted to know when he could go back to school... cause his friends would be missing him!!!! Which I am sure is true as Ryan has always been the life of any party and the friendliest, kindest and most caring little boy I know.
During the school holidays our aptm with the surgery was finally booked... we were finally going to get some answers as to when and how the surgery would take place!
MEETING THE SURGEON - DR ALAN MCNAB
We met Dr McNab on Thursday 9th April. I was very nervous about what we were about to hear. Ryan had been told that we were there to meet the doctor and decide if he could make Ryan's eyes look like everyone else's. Dr McNab was fabulous. He got along well with Ryan, Andrew and I felt comfortable asking questions and Cody was involved and asking questions too. But the best thing was that he was so positive. He informed us that surgery would take place in three stages.
Firstly: Fixing the inner corners of Ryan's eyes
Secondly: A brow suspension - taking some tendon and skin from Ryan's leg and inserting it into his upper lids.
Thirdly: Fixing his lower lids / tear ducts to limit the watery eyes.
The best news of the day was that each of these operations would be conducted as day procedures! What a relief - we had expected days of hospital stay's and Ryan to be in enormous amounts of pain and discomfort.
When I asked about the waiting time for this surgery I was told that it would only be about 3 weeks - I had expected months and months!
We did not book the surgery in straight away, I wanted to go away, think about it all and when it would suit us best.
We walked out of the consulting rooms feeling positive about the future for the first time.
SURGERY BOOKED!! THE COUNTDOWN IS ON.
Well, we booked the first and second procedures - 22nd June and 6th July. To take place at the Royal Eye and Ear Hospital. The countdown is on and I have gone from feeling happy and positive about it all to being apprehensive and scared! Don't get me wrong - I am glad it is booked and that we have a date to work to - but having it finally here is scary. I'm not scared for what is going to happen to Ryan's eye's because I have complete faith in Dr McNab - but I am scared for the recovery and how it is going to affect Ryan. Will he cope well?? Will he be in much pain?? Will he scar badly?? and so many more questions.
WHY DO THIS BLOG??
I have decided to put my thoughts and Ryan's journey into this blog for two reasons.
Firstly - as a journal for Ryan of his journey. For him to look back on in the years to come and answer his questions (hopefully!!)
Secondly - for me. An outlet for my thoughts / fears / concerns. I hope to write here along the way - post photo's along and share my thoughts with whoever wants to read this. Hopefully there will be other mothers out there who are going through what we have and this may help them. It may also be good for my wonderful family to read this and understand my thoughts and feelings - cause I know I am hopeless at sharing them with others without crying - which I do easily - actually I am crying know!
This whole process brings a tear to my eye because I hate that Ryan has to go through this all. But deep down I know he's going to be ok. He was born tough and will pull through it better than the rest of us. It will be hard on me, Andrew, Cody, the rest of the Family and even our gorgeous Jesse Leslie. My only wish is that in a year or so time Ryan will look up at me and smile and I'll see those beautiful big blue eyes and know that it was all for the best!
It took about 4 months before we finally got help from a local doctor who referred us to Dr Andrew Narita, an eye specialist, at Geelong Private Hospital. Dr Narita diagnosed Ryan with Blepharophimosis Syndrome when he was 8 months old. We were told that it was mainly cosmetic but that he would suffer symptoms such as watery eye's, blocked tear ducts and discomfort. Luckily for us Ryan has only really had problem's with watery eye's.
We were advised that corrective surgery was the best option but that it was best to wait until Ryan's face and leg's grew. The reason for waiting for the leg to grow is because a skin and tendon graft would be needed in one of the surgeries.
We have had to visit Dr Narita every 6 - 12 months since this initial diagnosis in order for him to assess Ryan's vision. We have been lucky again that his vision has been perfectly normal for a child of his age.
We have always tried to be very positive about this condition with Ryan. We didn't really mention anything to him about surgery until very recently. Ryan knows that his eye's are different but to him (and us!) they are normal. He has handled it very well despite the questions from his friends at school and people in general. I have found that is the very young and the very old people who are the most upfront with their questions. We have been asked why Ryan looks sleepy... why can't he open his eye's properly... is he asian.... etc etc I have at times handled these questions badly and have felt bad for Ryan, but he has taught me to be strong and that it is ok to just answer as honestly as possible.
OUR JOURNEY TO THIS POINT...
At this stage we were under the impression that surgery was going to be a lengthy and painful process for everyone involved. We made the decision in early 2009 to send Ryan to school early (at 4yrs 9mths old) so that we had some time up our sleeves in order to be able to have him repeat a year if necessary after or during his surgeries.
Ryan started school in 2010. He struggles a little academically but he is loving the social side of school! During his first school holidays he came up to me and wanted to know when he could go back to school... cause his friends would be missing him!!!! Which I am sure is true as Ryan has always been the life of any party and the friendliest, kindest and most caring little boy I know.
During the school holidays our aptm with the surgery was finally booked... we were finally going to get some answers as to when and how the surgery would take place!
MEETING THE SURGEON - DR ALAN MCNAB
We met Dr McNab on Thursday 9th April. I was very nervous about what we were about to hear. Ryan had been told that we were there to meet the doctor and decide if he could make Ryan's eyes look like everyone else's. Dr McNab was fabulous. He got along well with Ryan, Andrew and I felt comfortable asking questions and Cody was involved and asking questions too. But the best thing was that he was so positive. He informed us that surgery would take place in three stages.
Firstly: Fixing the inner corners of Ryan's eyes
Secondly: A brow suspension - taking some tendon and skin from Ryan's leg and inserting it into his upper lids.
Thirdly: Fixing his lower lids / tear ducts to limit the watery eyes.
The best news of the day was that each of these operations would be conducted as day procedures! What a relief - we had expected days of hospital stay's and Ryan to be in enormous amounts of pain and discomfort.
When I asked about the waiting time for this surgery I was told that it would only be about 3 weeks - I had expected months and months!
We did not book the surgery in straight away, I wanted to go away, think about it all and when it would suit us best.
We walked out of the consulting rooms feeling positive about the future for the first time.
SURGERY BOOKED!! THE COUNTDOWN IS ON.
Well, we booked the first and second procedures - 22nd June and 6th July. To take place at the Royal Eye and Ear Hospital. The countdown is on and I have gone from feeling happy and positive about it all to being apprehensive and scared! Don't get me wrong - I am glad it is booked and that we have a date to work to - but having it finally here is scary. I'm not scared for what is going to happen to Ryan's eye's because I have complete faith in Dr McNab - but I am scared for the recovery and how it is going to affect Ryan. Will he cope well?? Will he be in much pain?? Will he scar badly?? and so many more questions.
WHY DO THIS BLOG??
I have decided to put my thoughts and Ryan's journey into this blog for two reasons.
Firstly - as a journal for Ryan of his journey. For him to look back on in the years to come and answer his questions (hopefully!!)
Secondly - for me. An outlet for my thoughts / fears / concerns. I hope to write here along the way - post photo's along and share my thoughts with whoever wants to read this. Hopefully there will be other mothers out there who are going through what we have and this may help them. It may also be good for my wonderful family to read this and understand my thoughts and feelings - cause I know I am hopeless at sharing them with others without crying - which I do easily - actually I am crying know!
This whole process brings a tear to my eye because I hate that Ryan has to go through this all. But deep down I know he's going to be ok. He was born tough and will pull through it better than the rest of us. It will be hard on me, Andrew, Cody, the rest of the Family and even our gorgeous Jesse Leslie. My only wish is that in a year or so time Ryan will look up at me and smile and I'll see those beautiful big blue eyes and know that it was all for the best!
Yep and now the tears are running down my face as I read this too! Great idea to keep a record of everything. I love you all loads and know Ryan will be fine. xxxxxx
ReplyDeleteHi Kerri,
ReplyDeleteI too was born with Blepharophimosis & was so excited when I stumbled across your blog. What a thrill to read about Ryan & your journey so far. I have so much to say but not quite sure where or how to start. In the first instance I would just like to say Ryan looks exactly like me as a child (although I am now 43!!). I'm not sure if you have been in contact & met with other people with Blepharophimosis or Ptosis as me & my family always refer to it :) I too had operations as a child & its great to read on your blog that the procedure now is quick & Ryan is recovering well. Boy, it wasn't like that all those years ago when I had surgery! I am so glad for Ryan that he has a lovely & supportive family. What a remarkable job his Aunty did - well done Rell! Well "Ryan's Special Eyes" is so very apt for your blog for it is true but moreover what a special special little boy Ryan is - he looks simply gorgeous with a great, smiley face but it seems he has the inner strength & disposition needed to face the world & live a happy & fulfilling life. I'd love to go on & on but enough already I think. When you get the chance It would be great to hear back from you. Be safe. Cuddles to Ryan. Lesa :)
hey, me and my brother have it to! it's so nice to finally know the name of it! in the 2nd picture he looks exactly like my brother when he was little. we both had surgery to. i still am very insecure about my eyes because they don't look normal. i'm 14 now and i can't use eye shadow and that really bothers me... but i'm glad i had the surgery because when i see pictures of kids that didn't had the surgery i'm very happy that i got it. when i will have kids there's 50% chance that they have it to. but if they don't have it, their children won't have it to! Ryan is so cute!! he did a great job with staying strong! i'm not so good at the staying strong part but i'll have to live with it.
ReplyDeletekisses and hugs for ryan
xxx Jacqueline