Day 185

Ellie had just finished a big sleep when I arrived and I got two long ‘awake’ times during my visit as well as some sleepy hugs. On an interaction level Ellie was great. She was very attentive to the stories and chats, and was using her hands to grab and hit things as much as she could. Her breathing however was working harder than normal, but the nurse reported that she was doing better by the afternoon.

We are still ‘on hold’ for the inevitable hernia surgeries and the trip to the children’s hospital. They are hoping for this coming week, but from experience these things never seem to happen too quickly.


‘I’ve heard that story before Dad, yawn….’


‘You weren’t here when I went to sleep!’


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