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

Saturday, 19 February 2011

Friday 18th - Cakes and Bakes

I had my Adrenal Function test today with new Dr Tabitha. She put some magic cream all around places she thought she might be able to place a canula, in my arms and my feet this made sure the area was numb. She gave me some strawberry juice before putting in a special pretend hormone to stimulate my adrenal gland to see how well it works. They then had to get the blood samples and then drew blood at different times throughout an hour. The results came back pretty quickly this afternoon and my adrenal glad isn't performing as well as they would like it to, they don't know how long this has been the case but potentially if they can give me hydrocortisone it may help my body fight infections better. 
Mummy thinks that Canadian Karen will be pleased that we have had the test and she and Daddy are pleased that there are still things that can be done to help keep me comfy.
Look at all my teddies watching me sleep! I was sleeping when Claire came to drop off the cheque from UK Fuels, she was only here for a few minutes when Daddy got the tissues out, she had warned Daddy that she would cry. When people come to see me in real life at the hospital I think it is difficult, Mummy and Daddy have adapted to seeing me looking poorly; being so dependant on all my drugs and the box. They are surrounded by poorly people all the time and listen to stories from other Mummies and Daddies who have poorly children like a lovely lady called Jax and her boy Ki (Hello to you I hope you are ok today xx)

But for other people I guess it can be very upsetting. I think I looked ok today, I have some lovely new sleep vests from Rachel to wear (purple of course) and I have nice pinky cheeks. The downside is that my O2 levels are very high when I sleep and eat. I get very sweaty in my box and leave little Eleanor arm shapes on my sheets, yucky huh?

Mummy was invited to say goodbye to Agent Annie in a big boardroom with her worky people, Mummy met Sam who is doing a sponsored slim for me and lots of other nice people who have been very generous. After making her cry by reading a funny poem they presented her with a surprise. Instead of buying all fancy champagne and chocolates which Annie really deserves they put pennies and pounds together which she is donating to my fund. Then she came up to see me and Daddy to say Goodbye. Hah! We got a picture too. Big Kisses Annie

                                                                               We had a lovely donation from Helen from North Wales and some of her endurance baking work colleaugues, Rhianwen and LindaThey raised £128 in baked goods, 
Big Diolch i bawb chi troffers gacen fach yng Nghonwy Cyngor! Ac Da Iawn i chi guys!  


  1. Hi Ellie, and to Mummy & Daddy. How kind and generous of Annie to give her leaving present money to your fund! I saw it on 'just giving'. She has been very, very kind and helpful to you all, and will be missed lots.
    Don't Helen's cakes look yummy too? She will have to make some for Grandma's next coffee morning! ;-) 'Bye 'bye for now. Grandma xxxx

  2. Hi Ellie, we are pleased to see that once again mummy and daddy were right to get the doctors to check up on you and that now you can be helped a bit more. Mowbry bear has just gone on his travels to Austria to practice a silly sport called skiing. He is a bit scared at the thought of going downhill on snow very fast, but my friend Sophie has said she will look after him and send me some pictures, in Austria to send on to you! Take care sweetheart and give your mummy and daddy special hugs and kisses from us!
    Nicki and Simon x x

  3. Dear Ellie,

    Thank you so much for mentioning Mummy and I in your blog. We're very touched, infact it made Mum go all silly know what Mums get like sometimes (lol) I really hope your new medicine helps you fight off those nasty bugs and infections. I hope you're sleeping soundly just now. Also..let's make a deal to both 'try' and have a good night without making machines beep and buzz all night? No promises though..hehe.

    If only we were in the same hospital, I could've came and paid you a wee visit sometimes.

    Sweet dreams Ellie<3

    Lots of hugs, from Ki. Xxxxxx

    P.S. I think your Mummy and Daddy are very brave with the way they're coping with a special baby. Sending love to them too.

    P.P.S. I love all your photos, you're a very pretty girl with lovely long eyelashes Xxxx

  4. Dear Ellie
    I have been in touch today with Cronkinsons Farm Pub on the Stapeley Estate in Nantwich. The Manager of the pub is also grateful to ward 17 as his son was also a patient there. He is going to fundraise enough money through the visitors to the pub to give you the money for ALL the Winnie the Pooh lightboxes. The Manager and his wife are soon leaving for pastures new, and they are aiming to give you the money for all of them before they go. How does that sound :)

    I hope you have had a good day today. If you want to contact me its xxx

  5. hello ellie,mum and dad
    my name is lyn;i worked on wd 17 for over 20 yrs,but relocated to wales
    big thanks for the welsh language comments;really great attempt!!
    diolch o'r galon,teimlo n well,gobeithio
    lyn xx