absence seizures

Cicily has been having absence seizures for about 2 years now.  When she's having one it looks like she's just staring off into space.  She'll have 6-10 a day and they last 3-10 seconds.  Her neurologist was not surprised at all when we reported seeing this.  She said with Cicily's brain structure she would expect her to have seizures.  If you're going to have seizures - these are the way to go!  They really don't have any negative effects on Cis. 
I personally believe sometimes when she's having one that she is seeing her great grandparents and others that have "gone before" her.  A couple times when a seizure is over and she focusses on me again I've asked her how Grandma Shirlene (My grandma who died 16 years ago) is and she smiles her "we understand each other" smile. 

On her birthday morning I caught her in one of her absence seizures.  Here it is.  Maybe Great Grandma Bonnie and Gramps are telling her happy birthday? 

HAPPY 6th BIRTHDAY CICILY!

 Cis turned 6 on October 3rd.  She played, went to school, and had a party. 

 Cicily got to open her presents first thing when she woke up - even before her breathing treatment this year.  This is what Maya picked out to give her. 

 Sophie wanted to give Cis a collection of musical instruments.  I love Soph's hug here.  We use these instruments while singing "3 Little Birds" by Bob Marley - a Cis fave.

 Eating her cupcake and giving Grandma Sue some big hugs. 

 Cicily wanted to have a birthday party with all of her Cousins, Grandparents, Aunts, Uncles and best friend Michelle and family.  So at night we partied.  Cicily got a few more presents and LOVED them! 

Giving Grandpa Courtney a goodbye birthday hug. 

 

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!!!

Summertime!

Cicily got to go back to Camp Wiggles and Giggles this year.  She loved music time!  She's always requesting Bob Marley's Three Little Birds (Every little thing's gonna be alright) now and got Sophie singing it.  It seems very appropriate and it's so cute when Soph sings and Cis beams.

Lots of fun days playing with Michelle!  One day Michelle took Cis to the firestation where her husband works and got this cute picture!

             More camp - ball pit

SEDONA

We went to Sedona for a few days of rest and family time. 

Ghost town of Jerome.  Girls are on an old mining train.

                                                                     

The cool resort we stayed at had a mini-golf course.  And, the girls' favorite - a hot tub out on the patio of our room. 

Of course we saw some archaeology on the trip.  This is going up to some rock art at Palatki.  Cis was enjoying the rugged ride.  We stayed and waited out some rain in this canyon area and were rewarded with some awesome flash flood waterfalls on the red rocks! 

And also this summer - lots of DANCE PARTIES!!! 

Ice Cream for Breakfast pictures

Cicily's Ice Cream for Breakfast was last Saturday.  It was a lovely morning of people we love, sharing our memories, supporting GKTW and ICE CREAM!!!  We raised over $600 for Give Kids the World.  Very many thanks to all our friends and family who contributed to another family's priceless memories at GKTW.

The set up - We made a donation box with pictures of our family at GKTW.  We set out Cicily's wish trip scrapbook from Crops of Luv.  Chris made a DVD of GKTW youtube videos.  We had balloons all over for kids to play with. 

The first ice cream went to the 3 sisters. 

Cicily enjoyed tasting her ice cream for breakfast! 

Friends!

Maya eating her 3rd or 4th serving of ice cream.

 Cis helping nurse Kelly put her donation in the box. 

Friend Tommy enjoying his breakfast

Cicily's highlight of the morning - showing her trip scrapbook to her amazing teacher Miss Marli on one side and her wonderful nurse Kelly on the other.  Happy Girl! 

Ice Cream for Breakfast - your personal invitation!

Here's your own personal invitation to Cicily's Ice Cream for Breakfast!  Email us if you want to come and need Grandma and Grandpa's address.  (email is on the sidebar)  We're getting excited to see lots of friends and eat ice cream with everyone!!!

Thank you to our talented friend Shanell for making this adorable invite!  She designs cards and invitations if you ever need one: shanellgambell at yahoo dot com

GKTW Global Ice Cream for Breakfast

 GIVE KIDS THE WORLD

As you've seen from Cicily's Make-A-Wish trip posts, our family LOVED our time at Give Kids the World in Florida.  It was a truly unforgettable and priceless memory for our family.  GKTW seriously comes up in at least one conversation every day in our family! 
We've decided to serve up a little scoop of the magic to our family and friends as part of GKTW's Global Ice Cream for Breakfast campaign.  We're excited to support this amazing place and have some fun with our friends at the same time!

New chair - it's a WHEELchair

You can see how happy this girl is about her new wheelchair.  Which is good because it makes her mommy happy about her new wheelchair.  You see, this girl was never supposed to be in a wheelchair.  She was supposed to not be able to eat, breath, or hear on her own during her childhood; but still be able to fill that childhood up with running, soccer, and dance lessons.  The first chair she got when she was 3 we called her bus chair.  It was only supposed to be helpful until she learned to walk.  Now it's obvious that won't happen in this life, and she needed more support, so we accepted that she needed a real genuine WHEELchair. 

First day going to school in her new wheelchair.  This is how it looked before it got Cicily-ized with purple polka-dots.

After the initial fitting appointment for the new chair, I drove home a bit too fast (that's one way I cope- driving, sometimes quickly).  When we went to pick it up, I brought reinforcements- Dad came along and joked so much it made it a little better still. 

Then Cicily came home and sat in her new wheelchair and could open cabinets in the kitchen, and could be tall enough to see the counters.  She was LOVING it!  When pajama time came, she refused to get out of her new chair!  That made it almost all the way better. 

Then I called a good friend Staci and asked her about getting vinyl polka-dots to put all over Cicily's new chair.  She did much more than I expected and worked it all out and brought the polka-dots over within days.  Cicily's happiness in her new pokda-dot wheelchair made the need for a WHEELchair all the way better!

 

And if you're curious, this baby cost more than either of our cars.