6 year old portraits

 

Cicily turned 6 on October 3 this year.  These are her new, updated 6 year old portraits.  We had to take them on 2 different days as Mom had to learn a few camera tricks, thus the wardrobe change.  Love how all-around beautiful Cicily is.

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.

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. 

But I just miss her so much...

Sophie loves watching Cicily get on the bus every morning to go to school.  She talks about Cis being in Kindergarten and how she wants to go to school too.  The week after Cicily started Kindergarten, Sophie and I were driving and saw a little bus like Cis rides.  Soph got all excited and said, "there's Cissy Mom, there's Cis.  Let's go see her."  I told her that it wasn't actually Cicily's bus, Cis was already in her class at school.  "Let's go see Cissy in her class Mommy," she replied.  I told her we'd get to see her when she got home from school in a few hours. 

Then Sophie got pouty and said, "But I just miss her so much." 



It was very sweet to me.  I'm very glad that Sophie loves her Cicily enough to miss her so much.  It also broke my heart because it made me wonder what I'll tell her on the days in the future when Cicily won't be coming home?

KINDERGARTENER!

She's a great big Kindergartener!!! 

Cicily was very excited about her first day of school this year.  She is in a special education self-contained classroom with 5 other kids grades K-3.  All the other kids are very similar to Cis - limited body control, but able to learn on grade level.  For example: today they worked on subtraction and her teacher put some objects on the tray of her wheelchair and counted them out with her, then she took some away and Cicily had to push the number button on her communication device that corresponded to the number of items her teacher took away and then how many were left.  Her teacher is amazing.  Cicily's already in love and I'm thinking about finding some teacher award to nominate her for! 
Cicily also gets to do P.E., library (a fave), music, and go to a general education Kindergarten class for calendar time.  She rides the bus and gets to be at school for 4 1/2 hours.  So far Cicily has enjoyed making the boys in her class laugh by putting her feet up on the table, wearing purple since it's her and her teacher's favorite color, choosing a prize for working hard each day of school so far, and lots of other great new things.  She's so proud to be learning new things.  Her nurse Tami or her teacher let me know each day what she's worked on and when I talk to her about something new she's learned, she just beams!  I'm so glad she has the opportunity to use her brain in a way that it works- to learn and to interact with new friends.  I hope the year continues to be as great as the first few weeks have been! 

In front of her new school.  She's not wanting to look at me lately when I take pictures.  What an independent little 5 year old - grrr! 

Camp Zoo

Cicily got to go to Camp Zoo for 2 days this summer.  This camp was great!  Cicily loved being up close with all the animals of course, but she also loved the staff - they were so cool with her.  We always love kind-hearted people.

Cis got to watch me feed a giraffe (she chickened out -odd).  And she pet stingrays, rabbits, snakes, lizards, and even an elephant's foot!

 We're looking forward to another possible Camp Zoo in December!!!