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
Monday, 25 October 2010
Monday 25th October
Its two months until my first Christmas today, I got up early with Daddy and had a good feed but didn't feed well during the night, I'd been sick a couple of times yesterday and just seem to be sleeping all the time.
Falling a sleep on the job!
A lovely lady called Gill came today - she monitors my feeding and was very worried that I am not eating enough quickly enough, she said that I look exhausted and that sucking from the bottle is really tiring me out. She thinks it might be the reason I'm not putting on weight because I use all my energy just trying to eat. She then made Mummy cry because she said she felt that I would be better having my tube back for a while, I know Mummy knows its for the best but thinks it hides my beautiful face.
We are just waiting for Grandad and then they have a room for me at the children's ward. Mummy and Daddy will need training on how to use the tube and test it again. They both look very sad now though.
Me and Polly in the plastic crib again - you can tell I'm getting bigger - I wont be able to stay in this crib next visit!