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!".

Thursday, June 24, 2010

The day arrives - Operation #1


Well... Tuesday 22nd June, 2010. The day we've been waiting for had finally arrived. We had to be at the hospital by 10.45. We were up at 6.30 and fed Ryan brekky - he ate 5 pancakes (pikelet size!) with nutella! We usually struggle to get a piece of toast into him, he must've known it was going to be a while till his next feed! Rell & Josh headed off to work and we all said our goodbye's, we were a bit emotional with the stress of the day and not knowing what to expect so it was a little teary!

We left Narelle's at 9am and got into the city a bit before 10. Still another hour to wait! Mum & Dad met us and we just hung out outside and played and tried to keep busy. Ryan & Cody had a play around - running jumping & yelling! They had a great time - the rest of us were nervous as hell and just trying to keep a brave face.

Then it was time to go - we said our goodbyes and off we went. Ryan almost pulled us through the doors to the hospital he was in such a hurry. At this stage I was almost in tears because all I kept thinking was "the poor little bugger doesn't have a clue what he's in for!!!!"

Into the ward - Ryan was weighed, measured and given his special PJ's! We got him all ready and then went through the box of "goodies" the hospital gave us - a special teddy / book / texta's etc. This kept us busy for a couple of hours in between waiting for the dr's etc. We took lots of photos and played lots of cards etc. Ryan was amazing - took it all in, asked heaps of questions and just got on with it.

The doctor called in to check on us and let us know that we'd be in approx 1pm and that it would take approx 1 - 1.5 hours. I was in a little shock cause I thought it would take longer! The anaesthatist also called in and checked him out - asked lots of questions and asked us if we had any preferences as to using the mask or a needle. He said the needle was quickest and easiest and that he thought Ryan seemed to be "pretty easy to get along with" so we decided to try that. He said if Ryan was distressed or if he looked like having trouble he would use the mask.

And then we waited again.........

1pm came and we headed downstairs to the operating suite. We were told only one of us could go in with Ryan to the anaesthatist - Andrew went in. I gave Ryan some big cuddles and told him I'd be there when he woke up, then they walked off hand in hand. That is when I broke down - I cried and cried watching them close the doors. I was so scared for him. When andrew came back though he told me that Ryan was great - asked more questions and didn't even budge when the needle went in. He watched it go in and asked "what does that do.........zzzzzzzzzzzzzzz" He was out to it straight away!

Andrew and I went and had some lunch and then headed back up to the waiting room. I was quite sick at this stage (blaming it on my noodles for lunch!) but I think it may have just been nerves! It seemed to take forever but at 4pm we finally got the call that Ryan was finished and waking up. Again we were only allowed to have one of us in the recovery room but this time I went. By the time I got there he was dead to the world again ... it took another 45 mins for him to wake up. His eyes were covered in blood and a little bruised. We cleaned him up in recovery and he had an icy pole.

We headed back to the ward where Mum & Dad and Cody & Jesse had arrived. It was a huge relief for all of us to see Ryan had pulled through fine. He got up a few times and talked away to us then went back to sleep. It was about 7pm by the time we got him awake properly and he ate a cup of ice cream / icy pole and a vegemite sandwich! Needle's etc all came out with no problems and we were off home! WOW

It was a huge relief to be heading out of the hospital, Ryan slept most of the way home but when we got there was wide awake!

He ate again - banana bread and then ice cream, before falling asleep on Rell's shoulder in front of the tv.

Tuesday, June 15, 2010

One Week To Go


Well, the operation is next week. We've paid the Dr... got the admission information etc etc... now we just have to do it.

I had a big talk to Ryan & Cody last night about what to expect and see how they were feeling about it all. They are both scared... Cody said he was scared because "he'd never seen anything like this before in his life". I explained to him that we hadn't either but that the Dr had done it before on lots of kids and we just had to trust that he'll look after Ryan and us! He seemed to accept that and is ok.

Ryan said he was scared too.... to which I asked why????.... "How will I see if I'm drinking Chocolate milk or Strawberry milk if my eye's are covered?????" That's his biggest fear! Oh my god - what an amazing little boy. I would be scared out of my skin and maybe he will be in a few days too - but now, he's just taking it all in his stride. And he does understand what's going on - he knows that he'll be put to sleep, the dr will make cuts in the side of his eye's / nose and that he'll have his eye's bandaged when he comes out of the op. I've even said he will be very sore for a few days - so it's not like he doesn't know what's going to happen, he just accepts it.

And me... well I'm absolutely shitting myself already! I have already come out in excema and I'm not sleeping well. So I just want it all to be over and done with. I know I have to put on a brave face for Ryan - which I am doing - and be as up-beat and positive as I can but it is so hard. I think this is probably the hardest one though cause we just don't know what to expect yet. But this time next week I'm sure we'll all be ok and dealing with whatever is thrown our way!

As for the operation and our plans:

Monday we will travel to Melbourne. We'll spend the day travelling so that we can stop and have a few play's etc and have a good relaxed day. Staying at Rell & Josh's for the night.

Tuesday: Ryan is allowed to eat up until 8am so we'll be up about 7.30 and give him breakfast and then just not mention that he isn't allowed to eat again - I'm hoping this just goes un-noticed!!! Mum & Dad will be down in Melb for the day so they will look after Cody & Jesse for us and Andrew, Me & Ryzie will head into the hospital. We need to be there no earlier than 10.45. The operation time is set for 11am. Then it's just sit and wait... and we'll let you all know as soon as we can how our brave little boy is going!

I think we'll spend the rest of the week in Melb with Rell and head home on the weekend. But that will depend on how Ryan is and how I feel about taking him 4 hours away from the Dr. We'll talk to the Dr and ask his advice on this one!

I have found that I am doing a lot of staring at my beautiful Ryan's face this week. From next week it's going to start changing. It's a funny feeling, up until now all we've wanted is for his eye's to be like everyone elses - but now that it's here I feel like I'm saying goodbye to the face we've loved for 5 years!

Anyway... that's it. We're finally counting down the days! It will all be behind us soon.
xoxoxoxoxoxoxoxoxoxo