Day 152

It was a week ago I was boasting how nice a visit I had with Ellie, how alert and interactive she was. Then it was only three days later and we were being called in on the Thursday night as she was crashing yet again.

Today was another really nice visit. Ellie was very awake again and quite interactive. We went from talking to each other (she mainly grunts at me), reading stories again and having some hugs. As much as last weeks experience makes me hesitant to be so excited this time, there is a little more hope as Ellie’s milk and cares have been changed to avoid any more aspirations. The doctors are still on a plan to strengthen her for the operation that will hopefully fix her aspirations and hernias at the same time.

Late Update – Deb just called in to check on Ellie and she is continuing with her reputation as the cord puller. Even though one hand is permanently pinned to the bed and the other one is covered with a sock, she has managed to pull out yet another cannula! This time she used one of her feet to kick it out. We can’t wait to channel this determination in a positive way as she grows up!



Deb asked for a nice photo without her mask on today


Ellie was not so keen on posing for the camera….


Practicing her tracking with her Winnie the Pooh Mobile


3 thoughts on “Day 152

  1. Love hearing you had a nice visit. And absolutely love the photos! Such a girl to do as you ask 😉. I have no doubt with her determination she can change the world! I can’t wait to see what else Ellie and Hannah can accomplish when they have already achieved so much in such a short time.i hope today is another good day for you all xx


  2. She sure knows how to let people know when she’s annoyed – no hands to dislodge cannula? No problem, I’ve got another couple of limbs here that I can use. Determined just doesn’t seem an adequate descriptor for little Miss Houdini – keep fighting Miss Ellie – it’s gotten you this far – hope you’re on the home stretch xo


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