Wednesday, February 1, 2017

Tweening aint easy

Cicily is really showing her age lately.  The tween stage of life.  Here's an awesome story to demonstrate:
Cicily's school was having a pajama day with a cute story time event back at the school in the evening.  Cicily was a little skeptical of wearing pajamas to school, but agreed to it.  She enjoyed going to school and wearing her pjs like so many other 4th graders and kids at her school.  So when it came time to go to the story time in the evening, I asked her if she'd like to take a Minnie Mouse stuffed animal and she gave me a skeptical no look.  Sophie (1st grade) assured Cicily that EVERYONE was bringing a stuffed animal to the story time so Cicily finally caved and wanted to bring a Minnie along.  She's happily holding her Minnie on her lap as we wheel in to her classroom.  Her teacher starts reading her story to all the kids and parents gathered and Cicily starts looking around the room.  Then Cicily stealthily and very carefully (she's not very capable of being careful, so this was unusual) moves her Minnie from her lap onto mine with her face forward looking all cool like nothings happening.  She saw nobody else her age had a stuffed animal and quietly got rid of hers!  It was hilarious!!

Also Cicily's getting more and more into the "big" rides at Disneyland.  She tried out and loved Space Mountain this time!

 Cicily inspires her big sister Maya to brave one of the "big rides" Thunder Mtn. 

But in true tween fashion, she can't give up her excitement at the little kid rides either as she demonstrated by giddily pointing to them as we walked by.   
She doesn't look too happy here, but I promise just before the pic she was laughing with delight!!

Answers - LOVE edition

So as I shared back in November, we finally know what's responsible for making Cicily's body the way it is.  The gene POLR1C (or PolarIce as I think of it).  Cicily inherited a recessive version of POLR1C from both Chris and I.  The details of how Cicily ended up with POLR1C are a romantic story actually.  (Brief DNA 101: DNA codes for genes in our bodies.  All living things have DNA changes or "mutations" that usually go unnoticed.)  So Chris has a complete deletion of a line of code in his DNA that makes it so he passes on POLR1C as a recessive gene that has the potential to create Cicily's body.  Janalyn has a change in her DNA that turned a C in to a G which makes it so she passes on POLR1C as a recessive gene that has the potential to create Cicily's body.  Having DNA changes is common, but having DNA changes that code for the exact SAME gene is ridiculously uncommon.  As a geneticist put it before we had our youngest Sophie, it would be mathematically impossible that Cicily's condition is genetic and would happen again.  It's virtually mathematically impossible that two people would find each other and unknowingly have the potential to pass on the same recessive gene that can create Cicily's body!  See, romantic in a weird way isn't it?!  Chris and I now consider ourselves DNA crossed lovers.  We were discussing our awesome/awful situation one night and Chris commented that we needed a DNA BFF necklace where each of us has a half piece of DNA that matches up just right.  So I searched for something like that and found this necklace - C and J charms representing us and a strand of DNA representing our girls, one who inherited the recessive genes, and two who inherited the dominant gene.   
So if you see me around proudly wearing this necklace, you'll know it's a really good, brave day for me. And on that day I feel like I have 3 miracle girls.  The first is a miracle because she was born with a perfect body.  And as I realized in biology class, anyone who is born with a perfect body is a complete miracle given everything that can happen.  The second is a miracle because she inherited recessive genes that enabled her to have her perfectly broken body.  As Chris and I believe, Cicily could only impact people in the way she does with the body she has.  And only our DNA could have created that body.  The last is a miracle, because she was born!  And she may not have been conceived had we known about this science at work in our family.  
Our answers have made us aware of the miracles in our lives.  It may be an unusual love story, but it's ours.

5 year Wish Trip anniversary

Last month our family enjoyed looking back and reliving fond memories of Cicily's wish trip to Give Kids the World in Orlando, Florida back in 2012.   

This year we were very fortunate to celebrate the wish trip with a trip to Disneyland with our whole family.  

We are so thankful we've been able to watch all 3 of our girls grow up in these last 5 years. 

Cicily's wish trip and Give Kids the World has meant so much to our family.  If you want to read our feelings about it go here: or to relive Cicily's wish trip yourself, click on "Make A Wish" under site features on the left.  
To commemorate the 5 year anniversary of our trip together, we decided to donate to GKTW and get a paving stone that can stay at the Village.  We decided to put the words of Cicily's scripture on our paver: "Works of God made manifest"  (from John 9:3).  We thought this sentiment had dual meaning for the works that Cicily and GKTW both manifest.   

When Sophie is old enough to volunteer at GKTW, we hope to spend
 a family vacation back there donating our time and being "volunteer angels"
and visiting Cicily's star and our family's paving stone.  
Our forever thanks Make A Wish and Give Kids the World!

Wednesday, November 16, 2016

Student of the Month!

 Cicily was chosen to be Student of the Month for Mesa Public Schools this month!  This is Cicily smiling at what her principal Mr. Oliver is saying about her at the recognition night.  Mr. Oliver said they nominated Cicily because she is an inspiration in how she handles her challenges and works hard to learn. 
 Cicily with her great teacher from last year, Mrs. Martinez. 
 Cicily going through the victory tunnel!!!  All the staff from Cicily's school that came to celebrate with her made this tunnel when she came out of the meeting.  Cicily loves making a victory tunnel for her sister Sophie after her soccer games each week.  It made me happy that Cicily got her own victory tunnel for a change.  
 Everyone from Zaharis elementary that came to support Cicily on her big night.  Did I mention how AMAZING these people are?!?!  They came to celebrate Cicily after working hard all day with her and other students.  I've been to many schools as a student, teacher and mom and this is by far the very best school I have ever been to.  Cicily is treated just like every other student (with a heavy helping of extra support) by the staff and the students.  When I walk the halls with Cicily students of all ages say hi and are happy to see her.  Other kids engage with her in playing and in conversation in class and at recess.  It is truly inspiring.  And Cicily absolutely LOVES it!
 Cicily and her nurse Tamara.  We have been very blessed to have Tamara be Cicily's 1/1 nurse for 8 years.  They have a special connection. 
 Cicily's wonderful teacher Miss Kypke.  She's on the front lines helping Cicily learn and love school.  Mr Oliver holding Cicily's sock.  He loves to pull pranks with Cicily and she thinks it's awesome and extremely hilarious!  
 Grandma Sue and Grandpa Norm came to celebrate!
 Grandpa Courtney and Grandma DeEtte, Heath and Chelsea and family came to support Cicily!  (Dad was out of state interviewing.)
Cicily was so excited about this honor.  She wanted to wear a dress for the occassion but didn't want to wear any in her closet, so we had to go shopping for a new one!  She really loves to learn and loves going to school.  Her favorite subjects are science and reading.  I love that she is getting straight As in her 4th grade classroom and learning so many age appropriate things.
Congratulations Cicily!!  Keep on inspiring! 

Thursday, November 10, 2016


Simple answers: We got the results of our genetics tests today. They found the gene responsible for Cicily's body.  POLR1C (Maya has nicknamed it "polEric" for us). It's a gene involved in replicating proteins. It's a recessive gene that Chris and I both passed on to Cicily. POLR1C has caused 8 known people to have the brain issues Cicily has. POLR1C has caused 3 known people to have the facial features Cicily has. Cicily is the first known person to be affected in both ways. Chris and I have a 25% chance of having a child affected by POLR1C.

Good news is we have 8 people out there we can talk to about leukodystrophy and possible things they're doing to improve quality of life. We have a community!
Bad news is we can pass this on to future kids. We have wanted to have more kids. Chris and I have felt like we should hold off on that and today that door slammed shut.

Wednesday, April 6, 2016

Wait time

I've been thinking about how to describe to people how to best communicate with Cicily. Most importantly keep in mind Cicily is a 9 year old and thinks and learns like a typical 9 year old!  Her brain just takes longer to send the message to her body to react.  Our family recently saw the movie Zootopia.  After we saw this scene, Chris and I looked at each other and said is that totally like Cicily to you too?!  So I thought I would share the video so you can remember it when you're talking to Cicily.  She LOVES when people say hi to her and talk with her!!  Just keep in mind wait time.  Talk to Cis and then wait a good 5-10 seconds (which feels like forever!) for her brain to tell her face to respond.  It will happen, she loves to communicate.  Just remember to be patient, think of the cute sloths, and wait.

Monday, July 6, 2015

New hearing aids

 Cicily just upgraded to the latest hearing aid model - the Baha 5.  Can you tell she likes it!?!  In the previous post we had the pic of her holding my phone up to her hearing aid to listen to music.  With the Baha 5 she can stream it straight into her hearing aid!!!  It's bluetooth compatible and I have an app to control it on my phone.  She's been LOVING music and now she can listen to it with great sound quality anytime!  I even turned on some kids hymns while she was in church on Sunday and she got a good laugh out of it.
There's also a microphone feature.  I can push a link on my phone and speak into it and it streams straight to her hearing aids.  Cicily and her sisters have been playing around with this one!  Maya or Sophie will go into another room and say a secret word into the phone and then come back in and ask Cicily what the secret word is.  At church I stood outside her class and talked to her.  Lots of fun times being had with these new hearing aids!