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

Monday, 31 January 2011

Monday 31st January - In the news again!

When I woke this morning Mummy was looking at me through plastic. Apparently I wasn't coping in my pipes and shortly after having my cuddle last night because I wouldn't settle, the box was re-deployed. Upside is: I get to read my book again and see myself in the mirror. Downside, its warm and gets sticky, I can't get kisses.

Mummy went to see her lovely friend who is making necklaces, so far she has had ten sales of my purple necklace which is great news towards my fund! Amy helped Mummy make her very own one so she can wear it for me.
I was weighed today and for the first time in along time I haven't put on any weight - infact, i've lost some! I'm 6.78kg/14lb7oz. This may mean I've eventually stopped holding onto my milk and getting rid of it better. It may mean that I am just having a slow week or it may mean something else, whatever happens no one will know until I am weighed again next week. Nobody looked too concerned today so neither am I, yet.
Mummy was emailed by a newsy man this week and he has written a little story about me on his own blog, so hello anyone reading because of Nantwich News. 
Every now and again something happens and Mummy and Daddy have to remember that I am very poorly. If I wasn't in hospital, having drugs and being looked after then I really shouldn't be here at all. I am because at the moment the Doctors here can support my illness, by helping to control my fits and help me with my breathing. It isn't fun for any one who is in hospital, because they are sick. And it isn't fun for people who have to just sit and wait for you to die. I am only 5 months old (on Friday) but I'm deaf, my liver is enlarged; I can't eat for myself and I can't very well go to the toilet myself; I cant move my body or neck, and can't focus very well. But I am loved. More than anything and for now - thats the best I've got. Mummy and Daddy try and find things to do while they watch me so as not to go mad and then they just have to wait and see what other horrible thing this illness will throw at me. 
I know that Mummy loves me because she is always taking photographs of me and tells me how beautiful and special I am. I would like to be at home with my family more than anything else in the world. But sometimes you can't always get what you want, you get what you need. (Thanks Mick Jagger.)


  1. I see that you and Mummy are both wearing hearts today, Ellie. I know that purple is your colour really, but I do love to see you in red as well. As soon as I get my necklace, I'll be wearing your special Ellie heart too. So sending lots of hearts to you, Mummy and Daddy tonight, little precious one. See you all tomorrow. Grandma xx

  2. hi ellie i wanted to share with you a e-mail i had yesterday when i was playing on a game on face book the person i was playing against asked me about the i follow ellie logo so i explained about you and sent them the link to your blog as there daughter is also called ellie so this is what he sent me

    Thakns for the link to the Little Miss Ellie Blog. Sorry to hear about her condition. I saw the "Ellie Necklace" and am ordering one for my Ellie. I thought it would make a good birthday gift. I am quite sure that once I tell her the story about the necklace and how they both have the same name she will think it to be very special. My ellie has a very tender heart for this type of thing. thanks again and good luck to your Ellie.

  3. Hi Ellie
    I ordered one of your special necklaces as soon as I saw them and it arrived today. I just wanted to say how beautiful it is and how much love has gone into making it (I love purple too :). Everyone that wears one will be thinking of you and what a special girl you are. Janice x

  4. Hi Ellie,

    I would really like one of your necklaces so I thought I should drop a hint to my husband that it would make a nice Valentine pressie. He doesn't do subtle hints though, so in the end I just emailed him 'Valentine's Day' and the link! If I don't get one now he's in big trouble!

    Bye for now, lots of love, Karen xxx