Day 116

I wanted to start by saying, thank you to all those that comment on our blog. I always really look forward to reading them and find them very encouraging.

Ellie started a three day course of steroids today and gets to keep her morphine to try and counter act the ‘roid rage’. Better news is she was able to build up some blood herself so no transfusion.

Ellie’s cannula is still looking good, although I haven’t seen one taped down quite as well as hers was today. Weigh-in tonight, they are expecting a loss as she was retaining quite a bit of fluid last time she was weighed.

Hannah had a nice visit with her sister after missing her yesterday. Just a Mummy and Ellie day tomorrow.



My little princess.


9 thoughts on “Day 116

  1. Yes, no snorkel gives us all a good look at her perfect shaped head and sweet little face. Well done, Ellie on building up your own blood level – Miss Feisty does it again! Love the fact that it takes an entire roll of tape to stop her removing her cannula – Deb and Matt, she is so going to be the defiant , backchatting teenager, you do realise.
    Give E a big high five from us tomorrow, Debs and hugs to the whole family xo


  2. Matt and Deb this blog is an inspiration it shows faith and courage in action. We love you all dearly. Give a kiss and hug to Hannah and Ellie (and Nate and Levi).


  3. so lovely to read your blog, I do look forward to it daily. Good to know that Ellie seems to be heading in the right direction and hopefully she will be going home soon. Yes she does look so very cute without her snorkel.


  4. Great to see beautiful little Ellie looking much more free, an amazing little baby we are all so looking forward to meeting – along with big sis Hannah of course!! Hope you have a lovely Ellie day Deb, I think you are all amazing coping with all you have on AND sharing on this blog, thank you so much! Go Ellie – keep winning those battles! Much love Linda


  5. Gorgeous smile! I hope you’re having a beautiful day together today. It’s been the longest 4 months but so much progress!! Not long now until you’re all at home together. Look after yourself Debs xx


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