Cicily's Adventures: April 2014

Thursday, April 24, 2014

The kind of pretending Cicily's life inspires - Sophie edition

I was thinking of posting about something I heard while Sophie was playing the other day. And then I remembered this post about Maya playing: The kind of pretending Cicily's life inspires. Maya was about 4 years old and Sophie is 3. Both play scenarios really mirror our lives at the time. When Maya was 4 we were all about therapists and medical procedures. Now when Sophie's 3 we're all about wheelchairs and having hope in a future day when Cicily has a perfect body.
So Sophie was playing the other day (she likes to pretend on her own) and I overheard her saying, "It's ok, when you're resurrected you'll be able to walk and do all that stuff."
I'm happy Sophie has perfect 3 year old faith that because of Jesus, Cicily will be resurrected and be able to walk someday.

(No photo accompanying this post as Sophie likes to spend her days as a "nudie" whenever possible.) :)

Tuesday, April 1, 2014

Cissie Selfies

A couple months ago Cicily figured out how to take pictures on her iPad (communication device). So now whenever she wants a break from school work, she entertains herself and her nurse by taking selfies!

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.