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, 24 January 2011

Monday 24th January - Short but Sweet

Mummy told me that another little baby with my condition has died over the weekend, this is only a few weeks since a little boy too passed away. Their families are in America somewhere I think. She wishes them lots of love. She says it really brings it home to everyone what is happening with me and it’s really sad.
She has been on Facebook today to start a ‘Cause’, to highlight Zellwegers and a new Facebook group to try and connect even more families coping with this yucky disorder.
There is also another fantastic cause from another family

I have been asleep a lot today, I keep drifting in and out of awakeness, I see people coming in and out of the room but the conversations I miss a lot because I fall to sleep.

There is some discussion about arranging time for me to go to the hydrotherapy pool to float with Mummy and Daddy. It would be amazing, but it’s a scary thing to organise. I need a costume which Mummy thinks we have at home from Cousin Beth, I hope it fits me because I was weighed and have put on more weight today, now 6.86kg/15lb 2oz. Nadine has provided some of my little friend Andrew's unused swim nappies (Thank You), that'll keep Lynette the Physio happy that its only Me, Mummy and Daddy that will be swimming in the pool.

Mummy has had some lovely emails from people wishing us well; she found some in a junk mail folder and was very sorry that they seem to have been filed by the computer. (Chloe and Alison, thank you for your lovely messages. X) She has been looking at me through a lens a lot today and trying to be arty farty. She likes making pretty pictures and says I’m the most beautiful model in the world as well as the sleepiest.  She is planning on taking some more pictures tomorrow.

Daddy is engrossed in the Star Wars trilogy at the moment, I think I sound a bit like the man in the black helmet while I am in my box snoring.

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