I was born on the 4th of September 2010. On March the 3rd 2011 at six months old I died, because of a rare genetic disorder called Zellweggers Syndrome. I have lived because of people who loved me more than anything else in the whole world. This is my lifestory...
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
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, 24 November 2010
Wednesday 24th November - Black Days and Silence
Mummy got me dressed in a rush this morning, she put on another new outfit, this one was from Mummy's work friend Michelle (Thank You xx), its really cool. I had to have half of my feed before 9.30 because we went to the Children's Centre at Shavington for my first Baby Massage session. The lady at the desk recognised Mummy from when she'd been pregnant and this was the first time she'd been back with me since August.
We went into a really chilled out dark room with green starry lights, there were multi coloured mats all over the floor with other babies wriggling on their backs and soft cushions with mummies sat on them. My friend Rebecca and her Mummy Amy came today and sat next to us. The lady who runs the class is called Eileen Welch, ironically she's incredibly Scottish, she talks to a fake dolly while stroking it saying, "I like that" "That's Georgous",I think Mummy found her quite amusing.
Because Rebecca and I had only just eaten we had to wait for an hour before we could be oiled up so Mummy just tickled my toes and stroked my feet which made me fall asleep, oh and trump a little bit. After an hour Mummy did some tummy massage but I was fast alseep so I'm not sure how how that felt and then it was time to go because we had a hospital appointment.
We went to Leighton hospital, what seems like my second home sometimes, Daddy thinks he should get priority parking and a loyalty card for the coffee shop. While waiting for our appointment we bumped into Kim who is one of the Home care Team, when she asked casually how I was, (appart from being porky, as seemingly everyone knows about my weight gain this week) Daddy told her about my non breathing episodes. She looked concerned and contacted Dr Burns immediately, postponing our Audiology appointment...he turned up and closed the door to the room we were in. He discussed that me holding my breath was possibly the result of my brain doing funny things and that it meant that my respiritory system may be damaged in someway. Mummy isn't the cleverest girl in the world, she wont mind me saying that because she loves me, but I think she understood all to well what this means, which is that soon I may go to sleep and forget how to wake up.
With this thought in mind, sitting through the Audiology tests and finding out that I am profoundly deaf in my left ear and severely deaf in my right ear was probably not the worst news they had heard today - crap by all means, really crap. I really shouldn't swear, but as Mummy edits this I think I must have said something much worse than crap.
When we got home Mummy was on the phone a lot, talking to the Audiology people about me needing hearing aids and then to Dr Burns about what to do if I were to die at home. She held me for a long time before letting me go to sleep, I felt very wet on my cheeks. :-(
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:-( Hugs for you princess and BIG hugs for Mummy & Daddy. Love You xrx
ReplyDeleteVery very sorry to hear your news Ellie, thinking of you and your lovely mummy & daddy. xx
ReplyDeleteEllie. Really very sorry to hear your news and thinking of you and your Mummy and Daddy.
ReplyDeleteYour Mummy has done a fantastic job in helping you write your blog.
Much love and hope to see you soon.
Trish and Chris xxx
Hi gorgeous girl, Auntie Rachel has finally managed to work out how to officially follow you - you seem to be much more clued up on this technology than I am! I am so sorry to hear the news you received yesterday. Hopefully that can help you focus on getting stronger in other ways. I can't wait to get my first cuddle next week so please make sure you are strong enough for me to come up and visit - I think Mummy needs a cuddle too.
ReplyDeleteLots of love xxx