How to get the best out of this blog...

All blogs post are more recent first, if you want to read about Ellie's Journey I'd suggest starting from the first post back in September 2011 (October Posts) and read on Chronologically from there. It will make more sense and you'll get to meet the little girl who gave my life purpose.
Thank You for reading - every new reader shows that she has met another person and in her short life made such an impact. x

Wednesday, 29 December 2010

Wednesday 29th December - A little near miss for a Little Miss

Not to bore you but I had another near miss this morning, Mummy woke up and was ready for it, I think I shocked Nurse Tanya because although she knows me – she’s never been there when I misbehave. I know that after I come back,  from where ever it is I go (I’ll tell you one day) that they all make jokes with me but today Nurse Ruth made deep sighs this morning. Secretly I think they are all very worried  but they aren't allowed to tell you that.

I think Mummy is either being tidy or grumpy but I think Christmas is over, the cards have all gone and all my jingly, shiny things have been put away. She told Daddy that she has put the Christmas tree back in the garden at home so it can help itself to water when it rains. I never saw our Christmas tree. I haven’t been home for over four weeks. I’ve forgotten what home looks like now but everyday Mummy keeps sneaking in little bits of home, today she brought my cot mobile and the dangly CD’s. (Thank you Stella for negotiating the step ladders)

While Mummy was away, Daddy did all the chattering for a change, he saw Doctor Steve who’s very, very, tall; everyone is deciding whether I should increase the drugs for my seizures, we are. Kim from homecare came in as there is some talk of all the ways to look at getting me home, I’ve noticed how people now use words like special and unique when discussing me and the buzz words of today are “How long is a piece of string?”
They are now discussing having a big meeting all about me and inviting everyone who is involved with my life and death to that matter – I am causing so much trouble...

On the plus side, (which I am) I was weighed today, Kath was very excited, currently 5.66kg/12lb8oz. Get me.

Do you remember me telling you about a lady called Annie the day I met Father Christmas? She works at the hospital and does communicating for a living, like talking and writing, like I do. She has been communicating with a reporter at the Crewe Chronicle, who would like to write a story about me we are meeting her tomorrow; I hope she’s not like Rita Skeeta from Harry Potter!
Mummy used to work for the Chronicle, not writing though, she said she’s not clever enough to be a journalist, she sold advertising. She said that the paper was always pretty thin in between Christmas and New Year and wonders who will read my story but if we can get people to hear how good my nurses are it’s worth a shot! Now I know it’s not Cheshire Life or OK but it’s a start. Mummy says she doesn’t want to be in the pictures for the Chronicle but if OK gets hold of my story she’ll reconsider especially if it means she can have a makeover or a pedicure!

While Mummy was out today she dropped some little notes through doors of some of our nice dog walking neighbours, one of them appeared by my cot almost immediately, now that is what I call a good response. That was Jane, she said they had all be asking about me and Marlee and Lilly because they just hadn’t seen too much of us and everyone was worried. She was so glad to see me, even just for a little while. I hope she will come again.

My Uncle Jonathan and Aunty Julia and my cousins live over three hours away but came all the way here and back to see me today.  They brought a picnic to eat in my room and a big tin of sweeties and chocolate muffins which was very kind of them (I shared them with the nurses tonight!) Daddy showed them how my cot goes up and down so even little people can stroke me! Hee Hee they lok like they are in prison!

I read my new book at bedtime but it took a while to get to sleep as I have a horrid cough, Mummy finds it difficult not to laugh at me when I cough as my whole body bounces and my legs jiggle up and down. Instead she does a good serious face at Daddy which makes him check on me while she is busy doing her administerial duties for me.

By the way has any one else noticed that Daddy’s head is starting to look the same both ways up? It is very scratchy when he kisses me, a lot like Grandad or Uncle John!


  1. Hello Ellie. The nice lady from the Crewe Chronicle is feeling a little bit poorly herself this morning. She doesn't want to risk passing on any nasty bugs to you and so says a big 'SORRY' for not coming into see you and your mummy and daddy. I'll speak to her again when she's feeling better and she'll come in and meet you, Mummy and Daddy then. Hope you had a good night. x

  2. Hi Ellie
    You are looking as beautiful as ever. Every day I read and every day it makes me sad when you have had a bad day, I so feel for your Mummy and Daddy but know they love you so much and you really could not pick a better set of parents even if you could choose yourself! I hope all the Dr's can figure a way for you to get home but even if not it sure sounds like a nice place you are in. We too took our tree down at home because it just is not the same this year. Your little pal Harvey still has his though, its the envy of all his neighbours and every one says its like a winter wonderland at his place! Love to you and your family xxxx