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

Answers

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!

Thursday, July 2, 2015

Why I've been practicing Bikram Yoga

"It's normal after this pose to feel emotional" said the instructor.  "Uh that's a relief because tears just popped out of my eyes," I thought.  I was skeptical that a yoga pose could elicit such an immediate emotional response, yet the proof was in the tears trickling down my face.  I hadn't even realized I was sad at the time.  But reality was I'd been sad every day for the past 2 years, since my daughter Cicily was diagnosed with a terminal brain disorder.  This was just my 2nd Bikram Yoga class and after the tears in camel pose I knew this yoga was something I should have in my life.  I had felt spiritual peace in my life but never knew my body was in need of physical peace.  For the past 2 years practicing Bikram Yoga has allowed my body to let go of pent-up emotions and feel physical peace. 

Practicing also keeps my back from hurting so I am able to physically care for my daughter.  And in turn Cicily is my inspiration in class.  When I feel like I can't hold a pose another second, I think of her persistence and it gives me strength.  

Sunday, June 28, 2015

Lil bits of what Cicily has been doing...

 Utah for Spring break.  Barfing and diarrhea didn't stop Cicily from having a good time!  A fave for Cis was playing in the snow.  She always laughs biggest just playing with her family!!!
 Cicily was spinning and swinging on this swing at the park for literally an hour!  Anyone know how we can get one for home use?!?!
 Nothing better than a lap full of chicks and ducklings for this girl!
 Cicily's new friend, Nurse Joy!
 Sophie and Mom got to go on the 2nd grade field trip with Cicily to Butterfly Wonderland.
 2nd grade end of year performance.  
 Lots of museums for this family.
 Favorite pastime of late - holding Mom's phone and listening to music!
 Playing arcade games with Grandma and Grandpa at a HopeKids event!!
Cicily always wants to push the cart when we're out.  So I've been taking her by myself lately when we only need a few things.  We make an awkward, silly train!  If we've made your shopping trip inconvenient, sorry we're too busy enjoying life to care.  :)  

The long path

When we received Cicily's degenerative/terminal diagnosis 4 years ago, we had a 45 minute talk with her neurologist (yes she was amazing and we are heartbroken she died before Cicily).  Dr. Sweetnam described that Cicily's life would either go one of two ways: she'd get too sick to recover and die; or she would continue on a path of degeneration where her body lost function and she'd slowly die.
Chris and I discussed this at length and both felt that clearly her body would take the shorter path for many reasons.  She'd always been so sick as a baby and young girl.  We know her love for life and being able to live it up as much as she can.  It sounded easier than the alternative.
The alternative, as I wrote in January 2011, "Or, her body will slowly lose more and more function. This would mean she'd gradually lose the ability to crawl (which is somewhat happening), sign (also happening), sit, hold up her head, digest food, and so on, and ultimately breathe. As the doctor put it, she'd at some point "stop being Cicily". I hate that phrase.   I can't imagine her living too long without being able to smile, laugh and enjoy life with us. "
She's been so healthy over the past year compared to early on in her life, that we're starting to realize we're on the longer path.  
So rather than expecting every severe pneumonia to be her last, we're looking at long road implications.  And at the top of that list is, how do we continue to help Cicily be as happy as she can and get every bit of joy out of her life.