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.