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

Sunday, 23 January 2011

Sunday 23rd January - Back in the Box

I hadn’t settled overnight keeping Daddy awake so it was no wonder he didn’t get up until after nine, I’m not sure what Mummy’s excuse was though, rolling in at 9.30, black mark against her name. I started the day being looked after by Knitting Nurse Helen and had a bit of a wobble just before my breakfast. I needed to have oxygen wafting while I ate but nearly stopped breathing; everyone was watching me very closely. I finally fell asleep with my eyes open just to confuse everyone.

                   It’s continued to be a bad day today; I have been mostly uncomfortable, coughing and crying with tummy ache and bottom ache and also lots of hiccupping. No one seems to be able to sort it out and now I am so fed up and grouchy I don’t know what to do with my self. Mummy and Daddy keep looking at me all They keep moving me into different positions, and checking my nappy, then picking me up, putting me down. Suction on, off, in, out, don’t forget enemas and strawberry juice and a new one nurofen.
I think it makes them think that they don’t know what to think!
Mummy and Daddy have had to talk about when I die and what my funeral might be like. Mummy is reading a book that the hospice lady gave her; it’s got a white cover with a white lily one the front and has lots long of words in it. I think she found it hard to read while she was crying because the words were all blurry, so Daddy put it away for a while and said they would look at it another day.
Because I was grizzly Mummy thought it would be relaxing to listen to some music and she put on a special classical CD made by my little friend Will’s Mummy. That’s him on the cover! Hey Will, Hey Jan! Then I listened to my Lullabies, but they still didn’t make me sleep. Mummy wonders if it’s my tooth and has had a good old look at it today.
Holding my milk and my hand
                                                     Grandma came with Uncle John this afternoon, no sign of Aunty Sam as she has horrible studying for work to do so I’ve missed her today. Knitting Nurse Helen has had to go home early as she is poorly so Nurse Cynthia came in and made coffee and tea. The ward has lots of white spaces on the board but you aren’t allowed to say q u i e t just like you can’t say h o m e. ;-) Grandma brought a beautiful picture that has been donated for my auction, Cynthia likes it very much and kept pretending to steal it.  
Uncle John has got pictures of his shiny car in a shiny magazine, on the front page, a bit like Daddy in the Newspaper. Daddy wishes that our Camper was pretty enough to be in a shiny magazine, ‘One day’ he sighed.

                                                                                                   More in the news, I had a mention on
because of Wendy’s 50 mile trot next weekend. She asked Daddy if the Reading Post could do a story, they are very welcome of course! Thanks for the extra publicity Wendy and big kisses to you and your feet. (Give a shout to my Nanna who lives in Bracknell and Uncle Jonathon, Aunty Julia, Beth and Thomas who are in Maidenhead hee hee.)
I was very late having a bath because Mummy isn’t keen on taking my probe off my foot, apart from the fact that is usually smells all yucky and sweaty, she’s worried that the doctors won’t be able to read my saturation and heart rate levels if I’m not plugged in.
So I had my bath with people on hand: ‘Doesn’t do Poo’ Sharon and the lovely Jade helped with my bath and then afterwards I was massaged from head to toe, finally I was able to relax and just about fall to sleep. But then I was too sleepy for my brain and it keeps forgetting to take breaths. After about an hour and a half Sharon said the immortal words, ‘I think we’ll have to go back in the box’. So, I’m still awake, I am now in the box, its Mummy’s bedtime and everyone including me, is exhausted. 


  1. Read the news article Ellie - your fame is spreading in all sorts of circles. Thinking of you all tonight, as always, and sending love....Grandma. xx

  2. I hope you dont mind, but I have asked my friends at The Cat radio station which is the Community Radio Station for Crewe and Nantwich to see if they will run a fundraising story for you. I read your blog every day and would like to do something to help. x

  3. Argh Ellie I hates these bad days. Talking about books but not the very sad type. I had a tiny little friend in fishbowl type cot in the hospital and every night her Mummy would read her a beautiful story well some of them were not so loveky like the Gruffalo and one about a witch on a broom! But her Mummy loved to read and I think it was good that she got to hear her Mummys voice, every night I would quietly wait for th story (I nevr told her that thought in case it out her off!) Anyway I dont know why I told you that little story, but can go to bed now I have read about your day. Hope you have a good sleep, night night. Lyn xxx