Well , we got the results back from Charlie's eye tests. It wasn't good news, and was as far as we were expecting as was possible.

Charlie was being tested for Occular albinism, mainly because he has congenital nystagmus and that's often apparent with OA, added to the fact he is very photosensitive and very fair haired, the tests showed that he doesn't have it which is fantastic news, BUT ( never good when there's a but ! ) It has found an abnormality in his brain, one that's causing a lot of concern . They don't know what is causing it , or even how serious it is so we are waiting for an urgent brain scan to tell us exactly what's going on in there.

Can't even begin to describe how I am feeling about it because to be honest I am trying not to think too much about it , not that I can possibly think of anything else. I saw the test report and did the worse thing possible ! Googled the area of the brain they found the abnormality in and of course that is NEVER a good thing to do and only succeeded in making me even more terrified about the future! But it doesn't take a genius to work out at least some of the possibilities they may find in there and the things that is concerning them! His field of vision has also gone much worse on one side which is worrying. So all in all I feel like I am living every parents worst nightmare right now.

Also the scanner ( yes the only one ! ) that Warrington hospital has is not going to be working for the next few months , I believe it's being replaced. So they were going to do it under a general anaesthetic at Alder hey but they are now going to attempt a CT scan instead first . Not sure how because there is just no way he will lay still for it. Guess we will have to wait and see.

I can't even think about the future at the moment, I am just focusing on getting through every day in turn without turning into a total wreck ! lol , It's hard keeping my feelings hidden, but I have to , I have 2 other children and REALLY don't want them knowing or worrying until we know EXACTLY what we are facing.

Crazy thing is , when you look at him you would and could never imagine in a million years that something serious could be wrong. He is so beautiful and perfect in EVERY way.

Now we are starting on a whole new journey!