My Beautiful Ryan xoxoxoxo

Our beautiful Ryan was born in 2005. He was born with a condition called Blepharophimosis Syndrome. This condition affects the eye area making them look partially closed all the time. Our gorgeous boy is a tough little bugger though and has never let this condition affect him. He get's watery eye's regularly and has never complained, he just takes it all in his stride. He has now started school and gets asked by the other kids why his eyes are different and his reply is "I've got special eyes!".

Sunday, May 1, 2016

Operation No 4 - 2016

So, it's been a while since I've been here.  5 years!  Ryan has been going really well.  He's in Grade 5 at school and loves it.  He's a gorgeous boy, the kindest heart of any child I've ever met and just an absolute pleasure to have around.
With regards to his eyes we've been really lucky.  The only real negative with Ryan is that his tear ducts to not drain the fluid from his eyes properly and as his lower lids sit out from his eyes a bit he has very watery eyes all the time.  This is frustrating for Ryan as he has to wipe his eyes constantly and he does get funny looks and comments from other classmates etc.  It also causes irritation around his eyes and they are red and puffy a lot of the time.
So we made the decision to see our surgeon earlier this year.  He suggested that we operate on Ryan with the hope that we can improve the watery eye situation for him.  It wont alleviate it all together but it will help.  The procedure is a two part process... firstly they will pull his lower lids closer to his eyes and secondly his tear ducts will be re-positioned so that they drain more effectively.
The procedure is a day procedure and the plan is that we are there by 11 and hopefully leave that afternoon provided we have no complications and Ryan is feeling up to it.
The other boys, Cody (13) and Jesse (6) will stay with my parents and go to school as normal tomorrow.  Andrew, myself and Ryan will travel down to Melb and hopefully home again in the same day!  (Well that is the plan!!)

I will post another update in the next few days after the operation.  I will also take some photo's tonight as "before" shots so we have something to compare to!

Wednesday, April 13, 2011

The week after Operation 3.

These were taken about a week after operation 3. Also how he looks now with his beautiful glasses!

Before Operation 3 - in hospital ready to go!

The photo below is in the car on the way home from hospital - this is when Ryan wasn't opening his eyes and in quite a bit of pain. xox

This one is the morning after the operation after we had cleaned up his eye's and finally got him to open them up! What a beautiful smile from my brave little man!

Photo: After Operation 2 (Oct 2010)

Still in Hospital - Just after Operation no 2 - Bi-lateral Brow Suspension. October 2010 Bruised - but awake, happy and ready to go home!

And this one below is Day 2 - home and feeling great! This was the day I had to take him to school cause he didn't want to sit still!!!

Post Operation #3 Checkup

Back to melbourne for Ryan's post operation check up. We were hoping to get the ok that we didn't have to have any more operations! BUT... unfortunately this operation has not been quite as successful as first hoped. The watering hasn't really changed at all. Cosmetically the operation went well - the eye's look great, but the watering is still the same. We are to go back in another 6 weeks to see the Dr and make a final diagnosis, but it is more than likely that Ryan will have to have another operation to re-align his tear ducts. The ducts need to be pointed onto the eye's more than they are now. This will hopefully fix the watering. SO... I'll be re-posting after that aptm when we know some more. I do have some amazing before and after shots of Ryan's eye's though so I will try and find a spare ten minutes to post some pictures soon. I do also need to say a HUGE thanks to my family for being so wonderful again. I love you guys. xoxoxoxoxoxoxoxo

Operation #3

It has been a while since I have posted, life managed to get very busy over Christmas, New Year etc etc... Anyway, Ryan has had his third operation last week. This operation was to cut the outer corners of his eye's and lift his lower lids slightly. This lifting is aimed at angling the lids closer to his eye's and reduce the watering etc that Ryan has. The day of the operation was a hectic one, we had all three boys at the hospital for a change. Cody was fantastic - helping keep Ryan occupied and playing with Jesse when I was busy etc. The three BIG boys (Andy, Cody & Ryan) played Snap, Noughts & Crosses etc etc and all had a fun morning. Jesse decided he didn't want to sleep so he was a bit grumpy but it was all ok. When it came time for Ryan to be taken to theatre Andrew went with him and I took the other two boys downstairs to wait. The Anaesthatist gave Ryan a larger dose of anasthetic this time and gave it to him in his inner elbow, not the wrist as in other op's. He went off to sleep well and all was good. Andrew & I took the other two boys for some lunch then back to the ward to wait. The operation took about 2 1/2 hours then I was called into the recovery room. Ryan woke up with a bit of a fright as the ointment they put in his eye's was yellow and different to other times. He had trouble seeing and this caused him to "freak out" slightly. Ryan closed his eye's and kept them closed. He also complained a lot about the pain in his eyes this time so we gave him a cold washer to keep over his eye's and cool them down. We stayed in the hospital for another 3 hours before Ryan finally had some watermelon and a drink and they let him home! He didn't walk out this time - we modified the pram slightly and pushed him out - which Cody thought was pretty cool. Once we got home to Rell's Ryan was still in pain so I laid him down on the bed and cuddled him for an hour or two. He didn't feel like eating or drinking and still wouldn't open his eye's. I was quite concerned after a few hours and rang the hospital who told me not to worry and give it 24hrs. We had an ok night - Ryan slept with me. He woke the next morning in pain again, still not opening the eyes. I figured out that they were "glued" together with the ointment so used cotton buds to get them apart and clean them out for him. After a bit of an effort we got Ryan to finally open his eyes and once he realised that he COULD see he was ok. Slowly he started getting better and back to normal. We headed home from Rell's late that morning. This operation was quite different to other's but still ok. I think we expect Ryan to be absolutely amazing after each operation because he has been a little hero other times. He was really good this time still - but it did knock him around a bit more. He is fine now though - hardly any bruising and no pain. Back to the dr for our weekly checkup this week. xoxoxo

Thursday, October 7, 2010

Operation No 2 done!

Well we did it. Operation no 2 is done. I'm so proud of my Ryan. He did an amazing job again. It was a hard day again, they took the tendon from his leg and inserted it into his lids. No skin grafts yet - the dr is hoping that the tendon might be enough. We'll know more next week when we have the check up as to how successful it was etc. BUT>... it looks great. Not a huge difference but you can definately see an improvement. They have kind of created a "crease" in his upper lid and lifted it up a bit. I'll post photo's in the next day or so!
His leg has a cut in it about 4cm long and you can see the bruise going up his leg about 10 - 15cm. (that must be how much tendon came out?!?!) His leg is quite sore still, but his eye's are ok now.
We had a rough night the first night, he was up every couple of hours with pain in his forehead and leg, but I gave him panadol and a cold face washer to hold over his face and heaps of cuddles and we made it through! We headed home and he slept most of the way. He must've been quite sore and out of sorts though cause we took him to the pancake kitchen in Ballarat on the way home and he didn't eat anything!!!!!!!!
Anyway... Thursday (day3) was heaps better, we spent the day at home and then a couple of hours visiting his class at school. He was really good and didn't even need any pain killers on that day.
Today (day 4) has been a bit different, he's a bit grumpy and out of sorts again. But I think he's mainly just tired. we've been home again and he's only had one dose of panadol and seems to be ok. I think another good night's sleep tonight and he'll be 100%.

He didn't even get any shiner's this time! The only real bruising is to his leg which is amazing considering what he's been through. I can't speak highly enough of our amazing doctor. He's been so good and has done a wonderful job.

Anyway, we have a check up on Wed next week and will find out what the next steps are... but I think we might have a bit of a break now which will be good. It's been an exhausting and emotional time and I'm just glad to have a couple of op's down and out of the way.

I do have to say a HUGE thank you to Rell for the home away from home... Mum for being so wonderful with Jesse & Cody and ALL of my family for the support. I would not have been able to get through it without you ALL. I love you lots and lots.