Sophia's Dream Journal
Motto: "I Can Do It"
Diagnosis: Chiari Malformation,
Chromosome Duplication 1Q21.1
High School Team: Westlake Cheer
When my girl started school at the age of 3 she couldn’t even say “momma” she had lost her vocabulary due to all the pressure on her brain from the cranial stenosis and the Chiari malformation. 10 years and some dedicated staff on our team at school helped her achieve this goal. She told me over dinner as she cried looking at her certificate “mom I can do it” which is her motto. During the ARD meeting to talk about her goals for school and dismiss of speech therapy. The case manager told me that he is going to make his mission for her to work on her current top 3 goals to prepare her for high school.
We have adopted our local fire station 9 years ago when Sophia was 4. Every once in a while we bring them goodies to enjoy so we can thank them for their service. They gave us a tour of the fire station and were so grateful for the treats. We also use the opportunity to tell them about her story and shared her dream journal with them. They had such positive comments for her and how she has overcome so much. She also showed them some of her paintings and we agreed to drop a couple of them off for them to post on their wall.
I received coupons for Amy’s ice cream. So I spent the day with my girl. We always have the best adventures doing the most simple things together. Thank you CC4C for the coupons.
Sophia in A-B Honor Roll at Westview Middle School! YAY!
My girl has had to add 5 new doctors to her care plan. We have a praise to report that she has been released from one of her doctors to P.R.N. and is no longer on ADHD medication after 3 years of being on it. We have taken a different path on her health care. More on the path of endocrinology along with medication for her thyroid. my girl is doing great. We have finally started the process of braces, we will be having another major surgery to be determined for dental surgery before we can get braces. The great thing is that it has all been approved by insurance. The recovery is what we are having a little of anxiety about. We will keep you posted on when the surgery will be and the ongoing process.
When Sophia was being introduced as a new champion child for CC4C, we were just shy of celebrating her 1 year anniversary of her last “scheduled” surgery. Now we are not only celebrating 4 years with CC4C, but 5 year and 10 year anniversaries. This year will mark 10 years from when I feel her medical journey began because it was when she had her surgery No. 3 and 4 out of 14 total. It will also mark the 5 year anniversary since our last time to come home for recovery from her 14th surgery.
CC4C has given us so many opportunities to be surrounded by people who have celebrated my girl especially through some of her most difficult social struggles. Sophia wears her green shirt with such pride and talks about all the fun things we get to do.
An update on my girl, she has gained another uncommon diagnosis, Premenstrual Flu. The flu-like symptoms vary in duration and intensity, but the worst is the depression that lasts about 3 weeks. Of course through it all she gets up every morning with a smile on her face and exudes such kindness to hide all the symptoms she is experiencing at the time.
We have created a color wheel so that she can tell me how she is feeling throughout the day:
Green = great, Blue = very sad, Yellow = in-between, Red = anger, and Pink = sadness
So at the end of the day instead of me asking her “how was your day” I ask what color was her day. Only she can ask me how my day was (per her request).
I want to thank everyone who supports us whether it’s through their generous financial gifts, to the simple prayer and cheers. We love CC4C and look forward to many more celebrations. Cheers to starting 6th grade now let’s conquer middle school.
Sophia got her face painted at the All Abilities event that I volunteered for at the CC4C booth.
My girl has graduated 5th grade. Now we prepare for middle school. She has expressed her anxiety but this is also what she said “there are good people and bad people and I have to be a good person and show everyone kindness even if they don’t like me”.
This day came with a lot of tears and excitement for the next chapter in our journey. Thank you everyone who has supported us to get here and those who will be joining us for many more adventures.
This girl has rocked another math goal at school. This time for division. And school pictures are in.
I’m so incredibly proud of my girl. This is the third award this year. 1 for addition, 1 for subtraction, and now for multiplication. I remember that the doctor told me early on in her journey that she would not be able to understand math. God knew what her journey would be like and I’m so thankful that he chose me to be her momma. I could not be any more prouder of this girl. (Note the dates on the awards)
So my girl Sophia has achieved another goal at school and earned this award for addition and subtraction facts. This means that she is now moving onto multiplication and division for math because she has mastered addition and subtraction!
Kristy shared with us a letter from Sophia's speech therapist in school.
"I just wanted to reach out and let you know how well Sophia has been doing in speech therapy. I see a confidence in her this year that is so wonderful. When she’s unsure of her answer, she is implementing her strategies to help find the answer -YAY! We still work on providing cues to assist with her comprehension goals but she’s really been a rock star. I also get to join her with Ms. M’s group at times and I see the skills generalizing there as well. Ms. M is an inclusion teacher. Just wanted to pass along the good news."
Sophia has been awarded for her Perfect Attendance in school! This is huge and meaningful since she has never been able to receive this award. Congratulations Sophia!
Due to COVID, Sustaining Child Sophia was not able to attend a football game with her team last year, so this fall she and her mom were excited to make it happen!
Sophia earned her first Star buck at school, says Kristy, Sophia's Mom. The mascot at school is the Star, so they can earn these for different things from any of the staff at school. They can save them to buy something at the school book store.
“Thank you for being kind to others” - Mrs. Caldwell
This summer, Kristy and her daughter, Sophia, were scheduled for a combined appointment with a Cranial Facial Doctor and a Neurosurgeon.
"They were both pleased with her growth and how well she is doing health wise. We have been officially released from both of them after 10 long years.", says Kristy.
They also went to the dentist that same day and Sophia happily said “I have no cavities". She is finished with the “specialist” but will still have more dental surgeries due to all the pressure from when she was little.
Another milestone that Sophia will soon celebrate is her baptism on July 25, 2021.
Kristy says, "I’m a very proud momma and I celebrate every day with my girl."
This past December, 11-year-old CC4C Child Sophia celebrated a milestone most kids never have to dream of –their first three-year stretch without a return to the hospital for a procedure or test. Having battled a very rare combination of diagnoses since Sophia was an infant, Kristy said, “At that point I realized all those years of struggling through recovery, doctor appointments, and questioning deserve to be celebrated.” She reveled in a sense of normalcy after over a decade of fighting for Sophia’s healing.
Finding hope and joy during the hard times is essential to our families’ emotional healing. CC4C creates unforgettable memory-making experiences to help uplift our children, who are everyday heroes that deserve to be celebrated!
We matched Sophia with Westlake High School Cheer as an honorary member of the team and Kristy describes this experience as an absolute dream for Sophia. “Everyone involved with Westlake Cheer has gone above and beyond to make sure Sophia stays uplifted. They celebrated her birthday and bought her new school supplies. They know what her favorite things are and tailor her experiences to that.”
This past fall, our medically fragile CC4C children were on strict quarantine due to COVID-19, so we safely celebrated each of our Champion Children from a distance with a personalized car parade at our Parade 2 Uplift. Sophia served as grand marshal and guest of honor of her parade, waving princess-style from a convertible in her cheer uniform while Westlake Cheer and Band serenaded her.
Kristy and Sophia also attended our annual adaptive ski trip at the National Ability Center in Park City, UT. Kristy says, “The ski trip was an incredible bonding experience for everyone. It was so much fun to share the experience with Sophia, but also bonding with all of the other CC4C families. I wouldn’t trade experience that for anything.”
But the biggest celebration of all has been Sophia’s growth through her many procedures and 9 diagnoses. She continues to stay healthy and out of the hospital – and even recently made honor roll, even through a school year fraught with learning challenges due to COVID-19. Kristy says, “I never thought I’d be so grateful for something as simple as Sophia being nervous over a STAAR test.”
This coming school year, Sophia will help “her” team welcome another CC4C honorary child to Westlake Cheer – coming full circle to serve as a source of inspiration and cheerleader for another child walking the rare journey alongside her.
“Our lives started out in a 2-door hatchback car, but grew to include a bus,” says Kristy, single-parent mom of CC4C Child Sophia (Age 11).
As a baby, CC4C Child Sophia was diagnosed with a rare chromosome duplication 1Q21.1, which has no previous medical research or knowledge. The first of her three cranial surgeries took place in 2012 (age 2 ½ at the time). Her surgeons shaved her head, made an incision, and placed metal expanders inside her head to expand her skull. She also had the first of four Chiari decompressions to relieve pressure at the base of her brain.
On the morning of Sophia’s 8-hour long surgery, Kristy and Sophia walked into the hospital alone. They were used to doing things on their own (along with a team of 24 doctors monitoring Sophia’s care) - hospital visits and surgeries were no exception. Sophia was prepped and ready for surgery, so Kristy returned to the hospital lobby – to find half of her church community sitting in the lobby to pray and support her through the surgery.
Several years later, Kristy was selected to participate in a self-compassion class through Dell Children’s Hospital. Many of the families in this class were part of CC4C. Kristy said, “I was in a room full of people who had no idea the details of what I’d been through, but somehow they all understood what I was facing.” Just 2 months after this class concluded, Sophia was in the hospital yet again. This time she had another new network of support on her bus – families Kristy had met by attending the self-compassion program.
Sophia joined CC4C as a Champion Child in the Fall of 2018, adding all our families, volunteers, donors and supporters to her bus on the road to healing. Kristy joined CC4C’s TRIBE 4 Moms program, which offers support and connection for the moms of our medically fragile children. “I was so used to doing things alone that sharing things with other people was new and refreshing. TRIBE was finally a place to be my true self where I could talk with other women about life and lift each other up,” says Kristy.
Babies come into the world wrapped in so many hopes and dreams - but many of our CC4C families are quickly forced to shift to new dreams: for healing and a cure.
At just 2 months old, CC4C Child Sophia was referred to a cardiologist and geneticist due to her facial features and rapid heart rate. The cardiologist detected an extra valve on Sophia's heart and recommended eventual surgery to plug the valve. Additionally, the genetic test showed a very rare chromosome duplication 1Q21.1, which has no previous medical research or knowledge.
For over a decade, Sophia and her family have been on a journey towards healing that has involved multiple cranial surgeries, a new diagnosis Chiari Malformation (involving the cerebellar tonsils at the base of her brain), and a life-threatening spinal meningitis infection. They have celebrated progress with each step, but never made it longer than a 2 year stretch before going back to the hospital for yet another procedure.
Each new procedure and diagnosis brought new doctors. Each one asked Sophia’s mom, Kristy, to
re-hash Sophia’s extensive medical history – forcing Kristy to re-live the nightmares they had endured.
Over time, 24 doctors would join Team Sophia.
Sophia’s experience is not uncommon - CC4C Children see an average of 8-12 physicians in their journeys to healing. Their paths are fraught with tests, procedures, and sometimes lengthy waits and travel to see specialists. There are many, many costs associated that are not covered by insurance. CC4C supports families with financial provisions for medical expenses not covered by insurance.