Well it's been a pretty mad cpl of weeks !

Charlie had his brain scan last Monday , I managed to get him to sleep through it with a combination of starving him until just before his appointment time and putting him into his sleepsuit and sleeping bag to make him even sleepier ! When we got there I fed him and settled him to sleep , carefully put him into the scanner and he stayed asleep ! Was SUCH a hard experience and was so hard to watch as the scanner took his tiny little body away from me. He was lay and strapped in over his head and tummy so he couldn't move. I just wanted to burst into tears and grab him out of it when it first started up! As I stood watching him on pins praying he wouldn't wake up and see what was around him etc , the machine started talking !!!!! Automated voices saying " Hold your breath now ! " LOL! It only took around 5 - 10 minutes and he was actually still asleep when I picked him up again ! He was SO brave and so good and I can't begin to describe how proud of him I was and am!

The following 4 days were the longest I have EVER known. But on Friday we went to get the results, I didn't sleep a wink the night before imagining allsorts of horrible possibilities.

The scan showed that Charlie doesn't have a tumor and doesn't have any massive bleeds which were the two main things they were looking for and trying to rule out! This was just the biggest relief EVER , words can't come close to describing that feeling!

But underneath the happiness and relief , I also felt REALLY frustrated, we still didn't have any answers, we know there is an abnormality from the electrophysiology tests but we are still left wondering exactly what is wrong and what it will mean for Charlie's future.

He now has to have an MRI scan which will look at the area of the abnormality in more detail and hopefully that will give us the answers that we ( I!) so desperately want. I actually felt REALLY guilty for not just feeling the happy side of his results, almost like I wanted something to show up , and I guess in a way I did , not because I wanted him to have something awful of course but just because it is SO hard not knowing, they say that ignorance is bliss and I guess sometimes it is , but right now there is nothing I want more than to know what is going on and what I can do to help him for his future. Not knowing is without a DOUBT harder than any diagnosis could ever prove to be. But we are getting closer it is just going to take a little longer than I would like!

He has made me even more proud this week by sitting up ALL by himself which I am SOOOOO pleased about. His vision in his right eye is really reduced so it is an even bigger achievement for him !