Wednesday

Wednesday was a truly great day for Cis.  Her trach secretions were normal looking, she woke up early and was happy all day!  We were being silly while folding clothes in this pic and she was making her no face.  Every time I try to capture a true no face she starts smiling immediately as the camera comes out.  I asked her to just tell me no so I could get a good picture of it and she really tried, but just couldn't keep the smile out of it.  Classic Cis, classic.

The hospice nurse came today and said again it's very typical of peds hospice patients to have really good times and then have bad days come from nowhere.  It was very reassuring.  We absolutely love and enjoy the good days.  But it really makes me feel like I'm going crazy.  I told Cicily's school nurse that I'm glad she and Chris see Cicily's up and down days too or I would really feel like I was making things up.  The good days give us such hope and make me question our decisions.  A roller coaster doesn't even begin to describe it.