Saturday, August 12, 2017

Family Spotlight: Rast Family

By Denise Rast

Alexa turns 10 years old on September 27 Yes, double digits already. I can't believe it! It seems like yesterday we were bringing her form the hospital to our home in Riverbank, California. Alexa was born with Single Suture Right Coronal Craniosynostosis.  At birth I knew something wasn’t right, but was told by multiple Pediatricians that she was “squished from being born” and that I was “over paranoid.” God really had it on my heart to keep searching and after a few days we found Dr. Yang. Although he didn’t know what it could be, he said her face was asymmetrical, so he suggested sending her to a Neurologist for some tests.  One month later, she was diagnosed and within the hour I had googled and found CCA.  Back then there wasn’t all of this social media so CCA was our saving grace.  I called CCA and talked to Annie for what seemed like hours…and the rest is history. 

When Alexa was three she started having “episodes.” It was overwhelming. It was years of painful testing and she was so little.  She handled it all so well, and even though we still did not have answers she had been diagnosed with Benign Rolandic Epilepsy and Vasovagal Syncope. It wasn’t until she was in first grade that she looked at me one day and said, “Mommy, why do I have to do this? I don’t want to do this anymore.” It was then that she had realized this wasn’t normal.  Testing, hospital stays, doctors’ visits, this was not what her friends were doing.  My heart shattered and this was a teaching moment for me. I realized this moment was when she truly began to understand what it meant to have a craniofacial condition.

Alexa became an advocate for others with facial differences and for CCA, too. At the 2016 Retreat she stood up and pledged to raise $5,000.00 and she did.  She held a lemonade stand, an online auction, and Casino Bus Trip to raise that money.  Next, Alexa entered a writing contest where she had to write about an act of kindness. She wrote about raising money for CCA and won FIRST PLACE out of all the kids in the state of California. This past July we ran another fundraiser, a Charity Dinner, which grossed over $7,200.00 to help pay for CCA retreat scholarships.  Our local news did a number of articles on Alexa and her condition. We even had a float in our local Fourth of July Parade one year.  We try to always spread awareness and acceptance about all things craniofacial.  Our goal is to see more kids with craniofacial differences accepted for who they are, and not what they look like. 

The CCA Annual Retreat and Symposium means so much to our family.  Alexa, and her sister Hadley, get to see their friends and, well, I get to see mine, too.  It’s like a recharging station for my soul.  The 2017 CCA Retreat was eye opening.  This year we had to choose between 3 symposium sessions that we really wanted to attend. We chose the Craniosynostosis one.  Once again God was nudging me where He knew I needed to be.  I was astonished sitting in the audience, listening to the doctor speak.   He told us that our children should be followed by a Craniofacial Team until they are 30 years old. I was shocked because Alexa has never had a “team” and we were just told by the doctors to “call us if you need us, or if anything changes." All this information about annual scans and tracking her head circumference annually was news to me.  So when he started talking about the possibilities of the sutures reclosing and this causing a list of things including, headaches, seizures, and fainting spells, I felt like a failure.  I thought our annual check-ups were enough. I immediately sprang into action after that symposium session, got on the phone when we got back to California, and set her up with a Craniofacial Team at the University of California at San Francisco. Alexa will begin seeing this team of doctors in October. This symposium session is just one small reason why CCA and the Annual Family Retreat and Symposium day are so important.  These life-changing symposiums happen every year. 

Alexa loves God, and she is, as Matthew says in the Bible, the “salt” and the “light.”  She loves with all she has in her.  She is always smiling, but she is also shy and nervous about new things.  She loves competing in gymnastics and soccer.  She does amazing in school and always offers to help Mommy.  She is my little sidekick. I love watching her grow into the lovely young lady she is.   She makes me want to be a better person.  I am blessed to have two amazing daughters! 

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