One Year Ago Today: 01/15/2013 - Inspirational People

(01/15/2013, Tuesday) Evie woke up around 1000 to discover that the extra dialysis session scheduled for today had been canceled. (Hooray!) Likewise, her mom's visit was canceled for the 2^nd day in a row. (Boo!) So after doing a bit of in room PT and eating, it was great to have one of the child psychologists drop by for a crafting/chatting session to make the day more exciting.

Regrettably it caused her to miss school, but I'll call it a mental victory-- although it seemed rather light on the talking about feelings side of things, and much more like a visit by recreational therapy. It is what she needed.

Afterwords she took a bath, and we found a nurse to french braid her hair for us. We ate a late lunch/early dinner as tonight was the movie night activity she'd planned with recreational therapy in the playroom. We enjoyed making little eye masks and watching Disney's "The Incredibles" with a bunch of other kids.

I got talking to the mom of one of the kids we play with in the playroom more--a 6 or 7 year old seemingly care free happy go-lucky fellow with lots of energy that doesn't seem sick at all--turns out in his entire life, he's never spent more than a month away from UNC Chapel Hill before being hospitalized for this, that, or the other thing. Poor guy has no colon, amongst other things. The mom was telling me about her other kid, his sister who sounds suspiciously like an OI patient. The mom seemed much more well adjusted than a few of the parents I've met here--lucky for the little guy that is the case, it sounded like a tremendous load to bear. Inspirational people.

We got back to the room about 1930, ate a bit more food, and she got to bed around 2100. I spent an hour trying to get the nurses to confirm/deny the appointment time for dialysis Wednesday, but they seem unable to find out for certain. They told me to plan on the afternoon, as that was verbally the plan from the kidney team.

Evie is sleeping well.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.