Day 325

As always, Saturday is Ellie and Daddy’s reunion day (after not seeing each other all week).

Medically, she is doing brilliantly. She is handling the lower pressure (6) really well and doesn’t seem to be working too hard. Her CO2 level in the CAP gas was 43, which is within the sleep teams desired range. He core strength is improving exponentially and she is feeding better and better with solids.

We had a great time catching up together. Today I was especially appreciating all the little things that I took for granted with the two boys. Simple little things, that we were told would likely not be possible for Ellie. Things like:


Grasping things with two hands


Playing games on the floor


Listening to her dad play music


Complaining when dad changes from yoghurt to vegetables


3 thoughts on “Day 325

  1. Was so enjoying the post and all the photos till I got to the final photo. Matt, I thought you were a kind, loving, nice all-round good guy. You tortured your daughter with pureed pumpkin? How could you, you big meanie?

    Liked by 2 people

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