Wednesday, October 24, 2012

FAQs about Cicily

FAQs about Cicily 
(in plain non-medical, child-esque language)

What's that thing around her neck? 
It's called a trach.  It's a tube that goes into her wind pipe to help her breathe. 

Does she eat?
She does eat.  All her food goes straight into her tummy through a feeding tube.   She doesn't have to chew and swallow her vegetables.

How does she hear?
Without her hearing aids she hears like you do if you plug your ears.  With her hearing aids on she hears pretty much just like you.

Does she talk?
She says "yeah" and she uses her face and hands (sign language) a lot to communicate. 

Does she walk?
Nope.  She uses a wheelchair to get around.    

Why does she smile so much?
Cicily truly enjoys her life and all the things she gets to experience.  She loves making people happy.  She's not bothered or frustrated by all the things she can't do, she appreciates all that she can do. 

Does she understand things?
She understands everything that any kid her age does.  In preschool she learned colors, shapes, etc.  In Kindergarten she's learning about adding, letters, etc.
She also seems to understand many things that are only mysteries to most of us.    

What does Cicily have?
In Nov 2017 we FINALLY figured that out!  Cicily has a gene POLR1C that for her made her body develop different facial features (Treacher Collins Syndrome) and a disappearing brain (leukodystrophy).    

Does anyone else have what she has?
Not that we or anyone else we've ever met knows of.  If you think you may know someone - contact us!  Doctors know some people with her same gene that have TCS, and some that have leukodystrophy, but nobody with both.

Is what she has genetic?
We didn't think so.  But just found out that it IS genetic.  She got a recessive copy of the POLR1C gene from her Mom and Dad.  A genetic tragedy or serendipity depending on your perspective. 

Is she ever going to get better?
After she dies and is resurrected she will be all better!

Is she going to die?
Cicily should die before she fully grows up.  Doctors aren't sure how her life will progress/regress.  She is on hospice as of March 2017, so she'll likely die within the next few months.

What does she like to do?
She loves to play with her sisters and be entertained by them.  She loves animals - her dog and chickens specifically.  She loves reading books, feeding her chickens, going to school, singing time at church, going down slides, listening to her music, painting her toenails, being silly with her family and laughing, and many other things. 

If you have any Qs, leave a comment or email me.  I love to answer anything about my little girl.

Sunday, October 14, 2012

assorted fun times

 Trampoline jumping with Hope Kids

 The Zoo - lovin the goats!
Children's art museum

Life isn't about waiting for the storm to pass...

It's about learning to DANCE in the RAIN!

I found this quote when Cis was a baby and put it up in our house.  It seems to epitomize what Cicily does so well in life.  And what Chris and I have tried to learn and help her to do more of.  It's nice to remind myself, why would we let a perfectly good monsoon rain pass by without dancing in it! 

Side note: Maya was reading this quote one day and said, "Mom, if a storm was coming, I'd just grab an umbrella."  Yes you would Maya!  And that's another perfectly lovely way to respond to life.