The last two weeks have been difficult – trying to accept the path that we are now on and at the same time, trying to forget about it for a while while we wait to get a surgery date.  Mr Conlan is away on holiday so I know we won’t hear anything and yet I keep checking emails in the hope that there will be some news.

I still feel so emotional about it all and find I have to hold back the tears when we talk about Chris and what he has to go through.  Fortunately, he seems to be coping with it all much better than his mother!  He is just enjoying the summer holidays and not thinking about it – sensible boy.

Our next appointment is in September when we are going to Southampton Hospital to see Mr Evan Davies to get a second opinion about what is the best way forward for Chris.