Thursday 6th January - The Meeting Day

I had an early start today, Ray and Jenny were playing tricks on me while I was trying to sleep, they kept shining a torch at me! They giggled when I tried to shield my eyes. Mummy was in the put me up bed last night and was listening when they thought she was asleep. They were trying to be quiet buut obviously weren't as all of a sudden my Pooh light went off I think they wondered what on earth was happening!!

They kept a real good eye on me overnight though. because I’d been so bad early yesterday.

Daddy must have got up early as he was sat at the end of my bed eating toast when I woke up, he did my breakfast while Mummy had a ‘time out’ she called it and went home to shuffle some paper, tidy and things, what ever it is Mummy’s do, important things obviously.

When she came back she brought some lovely clothes that I’ve not been big enough to wear before, small issue though in that Mummy hadn’t accounted my canula bandage, to get it through the leg of these groovy pink harem pants, Mummy had to adapt them a little (Sorry Rachel) to get them over my ‘club foot’ as she refers to it.

Becky called in today with a big bag of goodies from her children that they have donated to our raffle in the ward. Big thank you to you guys.

I had lunch, sausage and mash, obviously not, it was just milk, as usual, I’m now on a diet though they put me on thin milk, am I allowed to advertise? It’s called SMA, it doesn’t really fill me up the same, not like my lovely sugary, rich stuff. Nevermind.

Grandma came to sit with me a while Mummy and Daddy and a whole lot of other people went into a room and sat round a big table with serious faces. Mummy went armed with a notebook, pen and a box of tissues. I obviously don’t know what happened in this room but both Mummy and Daddy were having warm drinks and were eating white tablets as they had headaches, the tissues didn’t come back.

Watching Merryday playing peekaboo

Anyway, we aren’t going any where for now, we are staging a sit in, hee hee no, we are staying here for now as I think I’m a bit unpredictable to say the least, so Mummy and Daddy aren’t too keen to move me. It’s possible this may be my home for ever now, but as you know, my forever isn’t like your forever, so Mummy wants to make sure I am happy and comfortable. Mummy says “Home really is where the heart is, home is where the three of us are.”

Something that came about from today was the importance of having our own time together, just the three of us, so the nurses have suggested that we make a 'do not disturb sign' for the door and are asking that all visitors ring in advance so they can be planned for on the black board. Thank you with your help with this in advance.

Big Hello to Sarah who called in this afternoon, (pre arranged ;-) She’s ‘G’ing Daddy up about the Triathlon and might be getting together a special Team Ellie with Mummy’s friend Claire (She’ll be emailing you Claire. Xx)

Ooh and  Talking about fundraising events….

Nurse Becky has popped her head in to ask how people can go about doing sponsored events for my fundraising, so Mummy has been busy and put an official sponsorship form together which if you would like to do something, you can email my Mummy at lou.prince@live.co.uk and tell her about it so we can give you a mention. Don’t forget to take photos and then when you get your money you can go on and donate it with some details at www.justgiving.com/ellie-prince

Nurse Suze is looking after me tonight and as she’s now reading the blog it didn’t take long to catch up, everyone is very informed nowadays, it might be a long night for her and Daddy though as my monitor is a very jumpy this evening, my heart rate isn't too good.... I am getting very sleepy now and my noisy neighbour keeps asking when the blog will be ready (Hi Casey!) so I’ll sign off for now. Thanks for reading. Xx