Well I haven't had much time to blog lately with my beautiful three boys keeping me very busy.
This photo here is on the way home from melbourne - look at the difference already! We can see the white's of Ryan's eye's on the inside!
Ryan has done a fantastic job with his recovery. He hasn't complained at all and has taken it all in his stride. The first week we had to clean and apply ointment 3 times a day, the second week was 2 times a day and now we are just daily.
We had a check up in Melb on thursday last week (12 days post op) and Dr McNab was extremely happy with Ryan's progress. We were concerned that Ryan had opened up one of the corners during some rough play time with his big brother! BUT.. it's all ok, the stitches had come un done early but still looked fine.
The big part of the day though was that we have cancelled the second op that was due for NOW!! It had been scheduled for 11am Tuesday 6th (RIGHT THIS MINUTE!!). This was an error on the part of the assistants in the Dr's rooms though. He would like ryan to recover better from this op before doing the second which is skin grafts / tendon etc from his legs into his upper lids. The operation will now be in approx 3 - 6 months. We have an apptm scheduled as a check up in 6 weeks so we will make the booking then.
Overall it has been an ok experience. I had expected it to be an absolute nightmare but it hasn't been at all. Ryan has been great, Cody has been fantastic as has Andrew. Other than just being tired with all the travel, worry etc we've all been ok.
Ryan will go back to school next week and we'll just wait now until the next operation comes around. Hopefully it won't be so daunting now that we know just what a brave amazing boy we have!
Thanks everyone for your support and encouragement over the past few weeks. Narelle, it is great knowing we have your house to call our own while we are down there! Mum & Dad thank you for looking after the other boys and allowing me and andrew to concentrate on Ryan while in Hospital. It was nice to know the other two were being spoilt rotten and looked after and just be able to spend this time with Ryzie. Sherryn, your support does not go un-noticed - Thank you! And to all the friends, family and strangers who have offered support - we appreciate it all immensely. Thank you all. xoxo
What an amazing young man we have in Ryan. He has taught us so much this last two weeks. He has taken everything that is thrown at him in his stride. He just gets on with the job without any complaints at all. It is wonderful to listen to the new discoveries he has already with what he can now see with the opening up of his eyes. The whole family has been wonderful. We are all here to support each other. We love you all so much. Mum and Dad
ReplyDeleteWoo Hoo 1 operation down, and you have all done really well :) It's amazing how he's recovering, and seeing him the day after the operation bouncing around as usual was just great. We'll keep up the pancakes for the next one to keep his strength up hehe, he seemed to love them!
ReplyDeleteLove Rell xxx
Hi Kerri : )
ReplyDeleteMy name is Tara Trotter and I came across your blog through pictures I was googling. I too, have blepharophimosis phtosis. My grandfather was the first to inherit the syndrome, and it was then passed on to my father and two of his four sisters. My father also has five cousins who have it as well. I know we don't know each other personally, but we have something so rare in common. I read most of your blog posts and couldn't stop smiling : ) What a precious boy you have. His courage and positive attitude gives me strength for the future. I had two operations on my eyes when I was two years old, and they helped tremendously. It was sometimes hard for me growing up, and even now getting the occasional stares. But I have learned (and am still learning) that the Lord gave me my eyes for a reason, and I praise Him for it. I am 22 years old and getting married in May. For females who have this syndrome, infertility is a possibility depending on what type of the syndrome you have. With my wedding so close, I am trying to find answers as to whether or not my husband and I will be able to conceive. And in my researching, I found your blog. I know I just gave you my life story and I'm sorry for all of the rambling, but I just want you to know how much of an inspiration your son is to me. Besides my family members, I have never met or seen anyone else that shares my syndrome because it is so rare. My thoughts and prayers are with Ryan and your family as he goes through his surgeries- trust me, they are well worth it : ) I hope that we can keep in touch. God bless you!