Friday 21st January

Dr Claire dropped off some goodies for the raffle, she is leaving soon to go to another hospital because her time here has finished, all my other lovely doctors like, Helen, Ellie, Danni and Toni and some of the boys too are all going. I hope that the new ones will be as good at saving my life or there will be trouble! Thank you to all of you by the way. xxxx

There has been a big news story about a little girl called Ceyln Vincent  who is six years old, a lot bigger than me but like me is very poorly and her parents have to care for her all the time with little breaks, like full time nurses. They have had to do that for 6 years, Mummy says that she worries about the future a lot some days and wonders how things would be if I am still alive, this lady’s life could be ours in years to come and I don’t want to be taken into care because my Mummy and Daddy are too tired to cope anymore.

Mummy thinks that this lady is brave to challenge the Prime Minister, because he is the one person who can make a difference, but she says he’s a big meanie and would rather spend money on stupid other stuff than look after little people who are suffering here and now.

I’ve spent sometime in my chair today and it’s very comfortable, so much so I fell asleep, when I do Mummy giggles because my foot twitches when I’m dreaming. Daddy tried to play poker with me, but I’m still not very good at calling his bluff…

They tried to get me on my pixie dust again to sort out my tummy but I needed another annenenanenena, you know one of those. So Mummy had a quick Google and had some other ideas, fruit juice, apparently, so after talking to Slim Fast Plan Kath we tried some fresh orange juice mixed with water.  Well, within an hour it had worked – how good is that?  I am on quite a big cocktail of drugs, so it’s nice to have one less. But as with me, being so special, there’s no guarantee that it will continue to work.

I had my posh visitor today, the hospital Big Boss lady Tracy, came to check up on me, I think she can’t quite believe I’m still here, neither can Mummy and Daddy but she’s very kind and she really appreciates all the fundraising we are doing. We also had a visit from my Audiologist Katherine who says she is signing up for the triathlon too…Mummy says they are all mad and is glad she has a dodgy knee. (Honest)

Cadbury Lou and my friend Kellan came today; Kellan is such a smiley boy!  Lou didn’t let him get to close to me in case he put me in his mouth, apparently he does that with everything. I’m not sure I want to be sucked and chewed on so Mummy let him have one of my toys instead, he seemed reasonably happy with that, but I’m sure he was still eyeing up my tubes. They chatted for a while before having to go to make way for my Grandad, Nanny Tina and Aunty Bella. I’ve never known Aunty Bella so quiet, she just watches me carefully, with good reason as I can be a bit scary. Grandad really wants an Ellie T-shirt if we get some but Mummy said he can only have one if he does some fundraising. He hasn’t got very hairy legs so he said he will talk to some people to see what he can do and he did a secret nod and twitch. Ooh, I wonder, he used to like to play golf, I wonder if he could arrange a little charity match?? Just an idea Grandad?

Emma Enema, ha ha! Not really, was in today, she’ll tell me off for that but she said she’d like a nickname and Mummy can be naughty sometimes. To be honest now so many of the nurses have helped with my enemas they should all be called that! So she’s just Emma, pure and simple, no need for a nickname, there’s only one. (x)

She was adamant she was going to bath me today but the ward was so busy she just couldn’t. Mummy and Daddy have mastered the art of juggling me, tubes, sponges and bubbles but they like to have someone on hand just in case I misbehave.

At six thirty, Mummy looked all fluffy and had drawn on her face a bit, she said goodbye to me and left the hospital. Daddy said that she had gone to relax for a little bit and would probably come back with a smiley face and a full tummy. While she was away I had a full tummy too but it was very uncomfortable and I cried and wriggled a lot. Daddy was lovely and he looked after me well and I was fast asleep when Mummy came home. She fed me though and gave me my drugs, she sat up with me during the night when I was uncomfortable and she got ‘Don’t do Poo’ Sharon to make me do a poo, (she soon ran away though) and get me night time strawberry juice.

I’m looking forward to seeing Uncle Jonathan and Aunty Julia and maybe cousin Beth. It was her birthday today so we need to give her big kisses if she comes.