Dandelion : Embracing Unique Children

Winter 2014

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EMBRACING UNIQUE CHILDREN

WHAT’S INSIDE Just Keep Swimming Katelyn’s Journey with Aplastic Anemia

Your Guide to Local Resources

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Just Keep Swimming

Katelyn’s Journey with Aplastic Anemia

By Amber Pryor

When three-year-old Katelyn is running a fever there are no decisions to make, it’s off to the hospital—plain and simple. When Katelyn runs a fever on Christmas, however, Kelly and Dave, Katelyn’s parents do need to consider one thing—does Christmas wait at home for them to return or do they pack up the presents, tree, and festive attire and bring it with them to the hospital? Well, in the Crittenden household, it’s the latter.

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Just a couple months after Katelyn Crittenden turned two, and in the middle of Thanksgiving travel preparations, Kelly noticed a bruise underneath Katelyn’s chin and she had no recollection of how it occurred. The next day a huge hematoma on Katelyn’s hip prompted Kelly to make a doctor’s appointment on the family’s way out of town. Katelyn’s pediatrician told them to get to the hospital right away. This once vibrant toddler was a very sick little girl with parents who couldn’t even begin to comprehend the severity of her illness.

Two weeks would pass before the Crittendens would have a diagnosis. Katelyn was neutropenic, in need of isolation due to an extremely weakened immune system—the culprit, Aplastic Anemia; a condition in which the bone marrow does not make enough new blood cells. With a diagnosis, “I went into action mode,” said Kelly. “How do we get her better?” However, they would have to wait through several more weeks of testing, transfusions, and hospital visits before they received a course of treatment.

As they prepared to have a quiet normal Christmas at home Katelyn developed a fever and off to the hospital they had to go. It was at that moment the tone of their journey with Aplastic Anemia would be set—an establishment of a new normal. “I thought to myself, I can pout and say forget Christmas because I am depressed and scared or I can create a magical Christmas for Katelyn and raise the morale of my family,” said Kelly. So they packed up Christmas for their stay 26

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goDandelion.com at the hospital, deciding to keep Christmas for all— happy, fun, and normal.

Christmas Eve marked the beginning of a fifty-nine day stay in the hospital and the beginning of treatment to try and put Katelyn’s condition into remission.

“As a parent, I began to grieve what she was missing—preschool, travel, play dates…and I had to shift my thoughts,” said Kelly.

“This is our new normal, so how do we create a happy, healthy life for Katelyn and for all of us?”

Kelly’s commitment to focusing on the positive is truly a lesson that she has learned from young Katelyn. “Katelyn is my greatest teacher… because kids don’t focus on what’s wrong, but what is right,” said Kelly. “We are the ones who put the expectations on things; but Katelyn, she has never questioned why this is happening to her, because she thinks life is normal.”

Katelyn’s new normal began to take shape on New Year’s Eve 2014 when she was transferred to the ICU for her extended stay in a posNovember 2014 | www.SacramentoParent.com

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itive pressure isolation room. That evening Katelyn, Dave, and Kelly watched the ball drop on TV adorned with their New Year’s Eve hats and sparkling cider.

Hospital life became an ocean of positivity. “Just Keep Swimming” streamed across the hospital room on a Finding Nemo inspired banner, along with colorful fish stickers and a “Health Wall” of photos of a very active Katelyn, as a reminder to all that Katelyn’s environment was one of joy and health.

“We set the tone and the staff followed our lead,” said Kelly.

After their two-month stay at Kaiser Roseville the Crittendens were

the zoo,” said Kelly. “With the transplant Katelyn will receive chemo-

able to return home, however there continues to be frequently

therapy, lose her hair, be hospitalized for one hundred days, and then

scheduled treatments and many unscheduled stays at the hospital.

have a lengthy recovery at a home near the hospital; so we are tackling

As a family, they are now preparing for Katelyn to receive a bone

our pre-transplant “list.”

marrow transplant, which can cure her of Aplastic Anemia.

Katelyn is still too vulnerable to have much physical contact with other “We are preparing ourselves mentally. We are cherishing everyday—

children, however she is unfazed by the lack of face-to-face engage-

playing in the sunshine, pretending to be Doc McStuffins, and visiting

ment, as this is the life she knows. Her parents keep her days filled

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goDandelion.com with “safe” activity and the computer has become a friend and resource to them all, connecting the Crittenden family with other parents and children affected by the isolation of Aplastic Anemia.

“Aplastic Anemia is so rare, that to meet other families is almost impossible without social media,” said Kelly. “I am reassured of what Katelyn is going through based on other family’s experiences and we can compare notes about treatment. These parents understand me and my commitment to staying positive.”

For the Crittendens, their commitment to staying positive isn’t without tears or fear of the unknown, but they have demonstrated time and again that they can redefine their normal to reflect the optimism they have for a healthier tomorrow and the dedication they have to creating a happy childhood for Katelyn amidst the constant complications of her condition.

“There is a quote that has become very important to me on this journey,” said Kelly.

“You can’t stop the waves, but you can learn to surf.”

(Jon Kabat-Zinn) If you would like to follow the Katelyn’s journey with Aplastic Anemia please go to www.facebook.org/kissesforkatelyn or www.caringbridge.org/visit/kissesforkatelyn November 2014 | www.SacramentoParent.com

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DANDELION RESOURCES

Embracing the spirit of perseverance.

A guide designed to connect parents of special needs children with local resources and support, find more at goDandelion.com.

Therapy

Recreation

Medical

Product

Advocacy

Autism Spectrum Therapies NORTHERN CALIFORNIA | 866-727-8274 www.AutismTherapies.com

Dr. Richard Borghi GRANITE BAY | 916-791-2020 www.RichardABorghiOD.com

Bridges Counseling Center ROSEVILLE | 916-797-3344 www.BridgesCounselingCenter.com

C Horse Ranch AUBURN | 530-888-7766 www.CHorseRanchAuburn.com

Carly Litvik Music Therapy Services SACRAMENTO | 916-905-0217 www.MusicWithCarly.com

Cater Galante Orthodontic Specialists ROCKLIN | GRASS VALLEY | 916-435-8000 | 530-274-4411 EL DORADO HILLS | 916-542-1800 | www.LuvMySmile.com

School

Organization

Childcare

Tutor

Providing families with community, resources and information, with an emphasis on serving families through quality services and individualized programs.

Vision Therapy for all ages, specializing in vision-related learning difficulties, brain injury (stroke or trauma), ADD/ADHD, sensory integration skills, eye movement control, focusing skills, and visual motor integration.

Experienced and compassionate counselors work with children, teens, couples, and families to treat ADHD, OCD and anxiety, school/behavior problems, bullying, etc.

A special needs riding program as a proven technique for children with a variety of special needs.

Specialized, in-home music therapy services to individuals both young and old to help unlock their fullest potential. Each session is tailored to the specific needs of the client and can address communication, motor, academic, cognitive, social, sensory needs, and more.

Specialists in Orthodontics. Services include traditional metal braces, clear porcelain braces and Invisalign removal braces. Concentrating on early treatment, special needs children, adult and teen orthodontics, they offer a free exam, which includes x-ray and photos.

WINTERS | 650-248-4072 www.ChangeYourLead.com

Specializing in Equine Assisted Psychotherapy and Learning (EAP/EAL). Offering skill building and life improving activities where individuals partner with horses to help make positive changes in their lives.

Children’s Choice for Hearing and Talking (CCHAT) RANCHO CORDOVA

CCHAT Center Sacramento is a unique auditory/oral school whose mission is to teach children who are deaf and hard of hearing to listen and develop spoken language.

Change Your Lead

916-361-7290 | www.CCHATSacramento.org

Cook Speech & Language SACRAMENTO | 916-575-8800 www.CookSpeechAndLanguage.com

Applying the latest diagnostics and evidence based therapy techniques to address your child’s unique issues with therapists that have extensive background experience working with a variety of speech and language disorders.

GREATER SACRAMENTO | 910-801-9360 www.TheDiaperPiper.com

Providing caregivers, both at home and in facilities, to acquire quality products for your baby, your toddlers, your children that have permanent incontinence problems, your parents or grandparents, etc.

Discovery Toys

Helping parents with Toy Needs for 33 years. View an Autism toy list at DTJudy.com.

The Diaper Piper

GREATER SACRAMENTO | 916-847-1385 www.DTJudy.com

Families for Early Autism Treatment (FEAT) SACRAMENTO | BAY AREA | 916-303-7405 www.FEAT.org

First Covenant Church RANCHO CORDOVA | 916-861-2240 www.FirstCov.org

Guiding Hands EL DORADO HILLS | 916-939-0553 www.GHandsSchool.com

Heidi’s House Pediatric Therapy SACRAMENTO | 916-817-8654 www.HeidisHouseTherapy.com

Horses for Healing Therapeutic Riding Center AUBURN | 530-887-9573 www.HorsesForHealing.org 30

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Non-profit organization of parents, family members, and treatment professionals dedicated to providing best outcomes through education, advocacy and support for the Northern California autism community.

On Eagles Wings is a free respite program (by reservation) for children with special needs and their siblings (under 14 years-old).

Services available on campus include speech and language therapy, occupational therapy, guidance counseling services, social skills training, behavioral education, functional life skills, and community-based instruction.

Heidi’s House Pediatric Therapy in Folsom offers individualized occupational therapy specializing in the treatment of Sensory Processing Disorder, Autism, and many other developmental challenges.

Improving the physical, mental and spiritual well-being of disabled persons (children and adults) through involvement with horses. All instructors are certified and all horses are trained and gentle.

goDandelion.com ISIS Healthcare Services SACRAMENTO | 800-385-1877 www.ISISHealthcare.net

Jabbergym MIDTOWN | 916-444-0033 | ROSEVILLE | 916-771-8255 www.Jabbergym.com

Joni and Friends City SACRAMENTO | 916-865-9411 www.JoniAndFriends.org/Sacramento

Koinonia SACRAMENTO | 877-244-5374 www.KFH.org

Lakeside Church FOLSOM | 916-985-3245 www.LakesideChurch.com

Lindamood-Bell Learning Processes SACRAMENTO | 916-929-8183 www.LindamoodBell.com

Magic Smiles Dentistry EL DORADO HILLS | 916-941-2341 | 530-677-6222 www.MagicSmilesDDS.com

Placer Learning Center GRANITE BAY | 916-774-1260 www.PlacerLC.com

Pro Au Pair: Live-In Childcare GREATER SACRAMENTO | 844-787-6566 www.ProAuPair.com

Reach for Speech FOLSOM | 916-216-8816 www.ReachForSpeech.net

Sacramento Children’s Museum RANCHO CORDOVA | 916-638-7225 www.SacKids.org

Sky High Sports RANCHO CORDOVA | 916-853-5867 http://Sacramento.JumpSkyHigh.com

Solano Learning Solutions SACRAMENTO | 707-334-7662 www.Facebook.com/SolanoLearningSolutions

Steps Therapy SACRAMENTO | 916-415-0119 www.BabyStepsTherapy.com

UC Davis MIND Institute SACRAMENTO/DAVIS | 916-703-0280 http://UCDMC.UCDavis.edu/medicalcenter/advantages

United Cerebral Palsy SACRAMENTO | 916-565-7700 www.UCPSacto.org

Warrior’s Soul, Inc. LINCOLN | 916-644-0770 www.WarriorsSoul.org

Weideman Pediatric Dentistry & Orthodontics CITRUS HEIGHTS | 916-962-0577 www.SacChildrensDentist.com

Specializing in orthopedic problems, neurological disabilities, and pediatric related issues including autism, developmental delay, sensory integration, and ADHD. They also perform home adaptation evaluations and durable medical equipment assessments.

Speech therapy, occupational therapy, and physical therapy for infants, toddlers and school-age children. Community play classes focus on language development and sensory integration.

You and your spouse are invited to a getaway from the daily cares of this world with a 3-night marriage retreat at Zephyr Point Conference Center, Lake Tahoe.

Providing high quality treatment foster care, adoption and family service programs available for children, youth and their families whose special needs can be met through services delivered, supervised and supported by professional agency staff.

Kids Klub provides a safe and fun atmosphere for special needs teens, children and their siblings.

Proven effective methods help individuals with previous diagnoses of dyslexia, hyperlexia, ADHD, autism spectrum and learning difficulties succeed in reading, spelling, math and comprehension.

Magic Smiles is dedicated to providing quality care in an environment that is professional as well as friendly and fun for children and young adults.

Created based on a long term belief that all children, regardless of their challenges, could succeed both academically and socially to go forward and lead a satisfying and productive life.

Hire an experienced and bilingual live-in Au Pair/Nanny with a degree such as, Kindergarten Teacher, Pediatric Nurse, Occupational Therapist, or Special Education Teachers for 45 hours of childcare, health insurance, international airfare, training, and local support.

A private practice dedicated to providing individual and quality pediatric and adolescent speech therapy intervention in a positive, family-oriented, child-friendly environment.

Families with children with special needs are invited from 5 to 7pm every second Wednesday of the month for a Beary Special Playdate. Of course, friends and siblings are very welcome too! (RSVP required) Sky High Sports is a unique trampoline fun center. Come by for an hour or two and have some fun. There is even availability for special needs guests!

If you or your child has difficulty with reading, handwriting, math, or attention deficits, there is finally real help.

Serving all ages with occupational, speech and educational therapies including sensory integration disorders, autism spectrum disorders, social intelligence difficulties, brain injury and stroke, as well as developmental delays.

A collaborative international research center, committed to the awareness, understanding, prevention, care, and cures of neurodevelopmental disorders.

UCP gives adults and children with all types of developmental disabilities the chance to grow, thrive and feel included. Through programs and services they offer individuals hope, confidence and promise.

Provides opportunities for recreational respite for parents and children using the unique connections found between horse and human. Individual workshops designed for each participant.

Specifically trained to diagnose dental problems and treat special needs patients.

The staff assists caregivers in the prevention of dental disease in addition to providing the best dental care for all children, regardless of developmental or health needs.

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