We live one day at a time in our household. It has been like that ever since Connor was born. We are having a really hard time when it comes to all of our health issues. As the boys are my responsibility I feel powerless to make it OK for them, I shouldn't get sick, but we are survivors and will overcome the difficulties that we have to endure.. That's what makes us funtion as a family.

Now to tell you how things are. I have been in hospital myself. Oh! how I value my parents at times like this, no problem they were right there for me as usual. What would I do without them? They made sure the boys were kept up to date on what was going on and that they were well taken care of. I had a MRI and will need surgery at some point. No results yet. This scared Lee and his health began to go down hill fast. His worrying about me made him stressed and his mood sank lower and lower. We knew that something just wasn't quite right with him and he did not want to tell the Health specialist how he was feeling just incase he had to go into hopital. In the past four years he has done really well with his conditions and for that I am so proud of him. His blood results showed that his underactive thyroid has become overactive, don't know why this has happened as he has been on thyroxin since he was 11 and has been on 200mg a day so now it has been reduced to 150mg. We are hoping that this sorts his mood out as it is always difficult to know whether it is his general health or mental health that is the problem. He is struggling with Connor and is resentfull towards him. This just breaks my heart to watch their relationship fall apart. Lee is usually a very loving and protective big brother. Both boys don't sleep at night so this is a huge problem for us all. We try and take things easy when we can, but that doesn't always work. Still I guess it could be worse.

Connor well what can I say about my baby. He got good news at ENT last week, his CT scan of his sinuses were clear no obstructions which is fantastic, so it looks like his allergies are to blame for the problems he has on a daily basis. Both his nostrils block at night and then he sneezes all day long. He takes anti- hystomines all year long and they don't seem to help at all. He is allergic to the dust mite and lots of other things and  with all the work that has been done over the past months in the house it is no wonder that this is happening. Lots of kids with Noonan Syndrome suffer from immune defficiancies and allergies. He has been given flixonase steroid drops for a month then he will use a spray before he goes back to ENT in February.

He is still going to cognitive behaviour therapy, still not sure if he is making progress there as we are still doing Coner reports to see if he definately has ADHD. He was angry because it was also said again that it might just be his Noonans, not what we wanted to hear as everything is pinned on the diagnosis of Noonan Syndrome, it is so infuriating. We now are waiting for the health specialist t to get her finger out and diagnose. Connor gets so frustrated at all the time wasting  and unecessary appointments. Not good when you have a young man that has gone through so much over the years. Is there ever going to be a time when the medical profession can leave him just to live his life. 

His transition at school has not been started yet and Connor is now bored at school. He is in his last year at high school and wanted to leave at Christmas but as usual nothing is in place for him yet. The careers adviser who is working with Connor is trying to set up days at colleges so that he can have a taster of the courses that he can't make his mind up to choose. He doesn't like change so I need to make sure that support is in place for him when he goes. 

Well I know I promised our story I will do it next time.