The month of March is dedicated to celebrating and cheering on Child Life Specialists around the country.

Child Life Specialist: noun

A person who is educated and clinically trained in the developmental impact of illness and injury. Their role helps improve patient and family care, satisfaction, and overall experience.¹

In both healthcare and community settings, Child Life Specialists are equipped to assist infants, children, youth, and families with the stress and uncertainty of acute and chronic illness, injury, trauma, disability, loss, and bereavement. They provide evidence-based, developmentally and psychologically appropriate interventions including therapeutic play, preparation for procedures, and education to reduce fear, anxiety, and pain.¹

We are incredibly honored and proud to work alongside Child Life to continue to improve the hospital experience for pediatric patients and their families. Many times, we get asked: “What does Child Life mean to you?”. For us, this is an easy answer. What we have learned over the years from working in pediatric facilities, that many things come back to Child Life. Their job is not easy, but it makes a profound difference in the lives of millions of children and their families around the country.

Without Child Life, a pediatric patient’s experience in a hospital is exponentially scarier than it should be. There are sharp needles, terrifying sounds, unfamiliar words, and unknown people. Even the simplest of procedures or visits can cause anxiety in a child. Child Life is always there to comfort, answer questions, and engage children in ways that help them cope with hospitalization.

For the 3 million children hospitalized every year in the United States, Child Life Specialists understand the unique challenges that accompany a hospital visit. With enCourage Kids’ support and funding, together, we are making hospitals a better place to get better. Join us this month as we celebrate and share the stories of how Child Life makes a difference.

1- https://www.childlife.org/the-child-life-profession

“She has a fire and a spirit inside her that doesn’t let her quit.”

February 7^th through February 14^th is Congenital Heart Defect Awareness Week. A congenital heart defect is a problem with the structure of the heart that is present at birth. Congenital heart defects are the most common type of birth defect and they can involve the walls of the heart, the valves of the heart, and the arteries and veins near the heart. One of our incredible enCourage kids, Dorian, was born with a congenital heart defect. We asked her parents if we could share her story during this week, and they were so excited to be able to tell the world how strong, brave, and kind their daughter Dorian is. Below, you can read more about her story from her dad Joe’s perspective.

Dorian was born with a very severe case of Tetralogy of Fallot with Pulmonary Atresia. We didn’t know how bad it was until we got to Boston Children’s Hospital where her two amazing doctors, Dr. Emile Bacha & Dr. Audrey Marshall, saved her life. It wasn’t an easy road for her or us. In the process of saving her, Dorian also suffered a stroke. She had her first set of open-heart surgeries at 10 weeks old and her third one at a little over a year old. In between, she had many cardiology appointments, plus echocardiograms every 3 months. She was also seeing otolaryngology, neurology, gastroenterology, and she was also seeing a doctor for a fracture she incurred in her spine while in Boston. So for us running around became the norm. As time went by she slowly got better and better. In the beginning, travel was virtually impossible because we needed oxygen to fly, but now we don’t. We would never have thought about going to California let alone a cruise, but we are excited to say that we’re planning one now.

Between the pageants, Girl Scouts, and ice hockey, there’s nothing she can’t do. She’s come so far because of the amazing doctors at both Boston Children’s and Montefiore Children’s. She has a fire and a spirit inside her that doesn’t let her quit, and it doesn’t know when to give in. She’ll keep going until she does it or falls down from trying to do it.

Dorian has been a part of enCourage Kids since she was about two years old. Since she joined, she has been on 5 or more camping trips, enCourage Kids day at Six Flags, enCourage Kids day at Citi Field, and the annual trip to FunFuzion.  One of her fondest moments was riding the Zamboni and being the stick girl for the Rangers. She also attended various other events through the Family Outings program like movies, hockey games, basketball games, concerts, Garden of Dreams talent show, and the list goes on and on. One special moment that happened this past year was Dorian being able to throw out the first pitch for the enCourage Kids Night at Citi Field. That was a once in a lifetime opportunity for her, and she thought it was so cool. I’d have to say I think this organization not only has done amazing things for Dorian but has also let her volunteer so she can give back to this amazing organization!!

We are grateful to have Dorian and her family as a part of the enCourage Kids community. It is such an honor for us to get to watch our enCourage kids grow up to be incredible people, living life to the fullest. You can see a few more pictures of Dorian through the years in the slider below. Thanks for reading!

The month of October is dedicated to shining a light on many disabilities and medical conditions. We hope this helps you understand and advocate for your friends and family members who have or know someone who has a disability.

Down Syndrome Awareness Month

Down Syndrome Awareness Month is a chance to spread awareness, advocacy, and inclusion throughout the community. During October, we celebrate individuals with Down syndrome and make people aware of their abilities and accomplishments. We get the chance to celebrate their abilities, rather than their disability.

Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. According to the Centers for Disease Control and Prevention, approximately one in 700 babies in the United States is born with Down syndrome, making it the most common chromosomal condition.

Here are a few tips on the preferred language when speaking about or with a person with Down syndrome:

• People with Down syndrome should always be referred to as people first.
• Instead of “a Down syndrome child,” it should be “a child with Down syndrome”.
• Down syndrome is a condition or a syndrome, not a disease- you cannot catch it.
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted” by it.

World Cerebral Palsy Day

World Cerebral Palsy Day is a movement of people with Cerebral Palsy and their families, and the organizations that support them, in more than 75 countries. The vision of this day is to ensure that children and adults with Cerebral Palsy (CP) have the same rights, access, and opportunities as anyone else in our society.

There are 17 million people across the world living with CP. Another 350 million people are closely connected to a child or adult with CP. It is the most common physical disability in childhood. CP is a permanent disability that affects movement. Its impact can range from weakness in one hand to almost a complete lack of voluntary movement.

CP is a complex disability. 1 in 4 children with CP cannot talk. 1 in 4 cannot walk. 1 in 2 has an intellectual disability. 1 in 4 has epilepsy. CP is a lifelong disability and there is no cure. Cerebral Palsy can also lead to other muscular issues, such as hip dysplasia or scoliosis. Fortunately, these can be treated with the help of an orthopedic physician to make living with Cerebral Palsy easier. You can learn more about this at Medical City Children’s Orthopedics & Spine Specialists.

World Mental Health Day- Thursday, October 10th

World Mental Health Day celebrates awareness for the global community in an empathetic way, with a unifying voice, helping those feel hopeful by empowering them to take action and to create lasting change. This year for World Mental Health Day, the main theme is “suicide prevention.” Somebody somewhere in the world dies of suicide every forty seconds. Ninety percent of these individuals have a clinically diagnosable mental illness. One-third of suicides occur in young people, and is the leading cause of death between ages 15 to 29, and is the second most common cause of death in women between 15 and 19 years old.

Although 1 in 5 children has a diagnosable mental health problem, nearly two-thirds of them get little to no help. Without treatment, children with mental health issues are at increased risk of school failure, contact with the criminal justice system, dependence on social services, and even suicide. Without treatment, these problems could continue into adulthood, causing them further problems down the line. Unfortunately, many adults find it hard to seek out a treatment plan that works, unless you decide to look at these Medterra reviews to learn how CBD oil could potentially provide a lifeline. And for many people it does. But diagnosing the problem and finding the relevant help as soon as possible will be in everyone’s best interest, as it could help to prevent suicide.

Studies show that suicide attempts among young people may be based on long-standing problems triggered by a specific event. Suicidal adolescents may view a temporary situation as a permanent condition. Feelings of anger and resentment combined with exaggerated guilt can lead to impulsive, self-destructive acts.

Four out of five teens who attempt suicide have given clear warnings. Pay attention to these warning signs:

• Suicide threats, direct and indirect
• Obsession with death
• Poems, essays, and drawings that refer to death
• Giving away belongings
• A dramatic change in personality or appearance
• Irrational, bizarre behavior
• An overwhelming sense of guilt, shame or rejection
• Changed eating or sleeping patterns
• Severe drop in school performance

National Physical Therapy Month

National Physical Therapy Month is an opportunity to raise awareness of the benefits of physical therapy. Physical therapy is a popular form of treatment that is very effective at treating disease, injury, or disability. It is a very good alternative to traditional surgery or drugs, as it relies on methods such as massage, heat treatment, and exercise.

Physical therapists can be found in many different settings- including outpatient clinics, private clinics, hospitals, schools, and the emergency room- and there are also many different types of physical therapy. Some examples include orthopedic, acute care, post-operative care, cardiovascular, pulmonary rehab, neurologic rehabilitation, and wound care. Although many people think physical therapists can only rehabilitate injuries, they actually work to prevent injuries as well by educating patients on safer movements and motions If helping and aiding patients that struggle with physical symptoms is something that inspires you, maybe search for some physical therapy jobs near me, these positions can offer massive flexibility considering the settings you’re able to find PT workers in.

Sudden Infant Death Syndrome (SIDS) Awareness Month

SIDS Awareness Month exists to provide parents and families with more information about how to reduce the risk of SIDS. According to the Centers for Disease Control and Prevention (CDC), approximately 3,500 infants died in the United States in 2014 from SIDS. SIDS is the sudden death of an infant less than 1-year old that cannot be explained after a thorough investigation that includes a complete autopsy, examination of the death scene, and a review of the medical history. This is the most commonly occurring unexplained death of infants.

Teaching points for prenatal or postpartum education on safe sleep include:

• Exclusive breastfeeding significantly reduces the risk of SIDS.
• Newborns and new parents sleep better when nearby.
• Always place infants on their back for any sleep.
• Do not allow any smoking in the home. Encourage and provide information to help women stop smoking during pregnancy.
• Swaddling has not been shown to reduce the risk of and may increase the risk of overheating and SIDS. Avoid swaddling during times of sleep.
• Do not use couches or chairs for nighttime feedings.
• Do not co-sleep if either parent smokes or is using alcohol or drugs which can alter responding to the baby.
• All surfaces on which the infant might be sleeping need to be safe. This includes cribs, cots, playpens, and the parental bed (if the mother falls asleep while feeding). A safe sleep surface includes:
  • Firm mattress
  • Well-fitting sheet
  • No blankets or pillows
  • No bumper pads
  • Use only equipment designated and approved for infant sleep
  • No surface that can entrap an infant
  • No toys or pets sharing the same sleep surface
  • Avoid swaddling or clothing that can cause overheating

Spina Bifida Awareness Month

Spina Bifida Awareness Month is a time to celebrate the hundreds of thousands of people living with Spina Bifida. Spina bifida means “split spine.” It happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about eight babies born in the United States have spina bifida or a similar birth defect of the brain and spine. Spina bifida is often referred to as the “snowflake condition” as no two people are affected in the same way.

Spina bifida is the most common permanently disabling birth defect compatible with life. Over 1,600 babies are born with spina bifida every year in the United States. Spina bifida occurs in the first 28 days of pregnancy, often before a woman even knows she’s pregnant. Children with spina bifida have medical expenditures 13 times greater than those without spina bifida. Along with many of the other disabilities overviewed in this page, people with spina bifida often tend to be unable to work throughout their lives, meaning their income will more than likely be acquired through Social Security disability benefits. If you’d like to learn more about disability benefits head on over to a webpage such as Crest SSD or other similar SSD advocacy services.

National ADHD Awareness Month

Attention-Deficit/Hyperactivity Disorder (ADHD) is a neurodevelopmental disorder affecting both children and adults. It is described as a persistent or ongoing pattern of inattention and/or hyperactivity-impulsivity that gets in the way of daily life or typical development. Individuals with ADHD may also have difficulties with maintaining attention, executive function (or the brain’s ability to begin an activity, organize itself, and manage tasks), and working memory.

There are three presentations of ADHD: inattentive, hyperactive-impulsive, and combined inattentive & hyperactive-impulsive.

In 2011, the Centers for Disease Control and Prevention reported that the percentage of children in the United States who have ever been diagnosed with ADHD is now 9.5%. Boys are diagnosed two to three times as often as girls.

Currently, available treatments focus on reducing the symptoms of ADHD and improving functioning. Treatments include medication, various types of psychotherapy, behavioral interventions, education or training, and educational support. Usually, a person with ADHD receives a combination of treatments.

Rett Syndrome Awareness Month

The goal of Rett Syndrome Awareness Month is to bring about awareness for Rett syndrome, while also striving to find a treatment and a cure. It is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls but can be rarely seen in boys. It is often misdiagnosed as autism, cerebral palsy, or a non-specific developmental delay. Rett syndrome can occur in all racial and ethnic groups and is not a degenerative disorder. Throughout a person’s life, Rett syndrome can cause problems in brain function that are responsible for cognitive, sensory, emotional, motor, and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.

Rett syndrome is caused by a single gene mutation that leads to underproduction of an important brain protein. It is the leading genetic cause of severe impairment of girls- most cannot speak, walk, or use their hands. Despite their physical disabilities, girls with Rett syndrome are believed to be functioning mentally at a much higher level than previously thought. Rett syndrome is a potentially reversible disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

We last left Teddy helping his new friend, Luke, through an IV needle insertion. But with Teddy’s reassurance, the procedure was a breeze and the little boy was a lot less nervous. The doctors are still not 100% sure what is causing Luke’s pain, so he is having a CAT scan today.

CAT scans are intimidating. The machines seem huge for a little patient, and they can make pretty scary and unfamiliar noises. They also require the patient to stay very still, something that can even be difficult for an adult. Luckily, Luke has his friend, Teddy, to provide him with comfort and to ease his nerves. While Teddy cannot go into the machine with Luke, he is close by, sitting on a chair near the machine. When the test is over, Teddy is waiting with open arms to give Luke a big hug.

Many times, when the diagnosis is unknown, a young patient will need to visit the hospital numerous times. Now that Luke has Teddy, going back to the hospital does not scare him nearly as much. He walks out of the hospital, holding Teddy, and knows that he will be able to take on anything during his next visit.

Thanks for following along with Teddy’s adventures. He has many more pediatric patients to help, and you can support him. Donate today to send a pair of Bears to pediatric patients around the country.