Sep 09

National Teddy Bear Day

Teddy Bear Clinic

Photo: Juan Pulido Children’s Medical Center DallasPhoto: Juan Pulido
Children’s Medical Center Dallas

Evan is shown an X-ray of his teddy bear by a child life team member at the teddy bear clinic at Children’s Medical Center Dallas. The teddy bear clinic provides an opportunity for pediatric patients to step out of their role as a patient and become a caregiver. Each child is given a teddy bear and, in their caregiver role, names the bear and decides on a diagnosis. The bear then moves through each treatment station: registration, IV placement, X-Ray and surgery.

This therapeutic activity provides a positive healthcare experience. The bear often serves as an outlet for patients to express their feelings or concerns regarding the bear’s care, or their own. Its impact is far-reaching, increasing a child’s confidence and assisting with coping skills.

Aug 19

Medicaid Matters for Kids Mondays - Ben

Speak Now for Kids is celebrating Medicaid’s 54th birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Ben’s mom, Jen. Ben is a Speak Now for Kids Family Advocacy Day alum and current patient at Blank Children’s Hospital.

Ben was diagnosed with a rare disease called Duchenne muscular dystrophy (DMD) at age 3. His muscles are quickly breaking down and will not restore themselves, so every decision we make as a family must include Ben’s medical needs. We think about the small decisions like taking him to the playground—will Ben have enough energy to play, or will he get frustrated because his body won’t cooperate. We want him to have a happy childhood, despite the crippling effects of this terrible disease.

Overnight, our family went from being a normal and healthy family to a special needs family. Since our primary insurance doesn’t cover all of Ben’s needs, we rely on Medicaid to make key services available for him. His drug costs are expensive, and he’ll require multiple medications and medical equipment moving forward. Without good insurance options—like Medicaid or access to our primary insurance with pre-existing conditions—our family would face serious financial effects.

Aug 12

Medicaid Matters for Kids Mondays - Conner

Speak Now for Kids is celebrating Medicaid’s 54th birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Conner’s mom, Katiane. Conner is a Speak Now for Kids Family Advocacy Day alum and current patient at Children’s Specialized Hospital.

Conner was born premature at 25 weeks and experienced many associated conditions, including cerebral palsy, seizures, developmental delays and blindness.

Our lives revolve around accommodating his medical conditions—I devote every minute of each day to caring for Conner and taking him to countless doctor appointments.

We wouldn’t be where we are today without the vital coverage from Medicaid. Our family has private insurance and my husband’s history of military service qualifies us for TRICARE—a health insurance program for military members and their families. But even with these two forms of coverage, Medicaid is essential for Conner to cover his medical appointments and supplies. It helps fill the gap when our private insurance and TRICARE fail to cover certain needs, like many of the home-health services Conner needs.

Medicaid allows Conner to live at home with his family where he belongs. It provided a ramp for Conner to safely get in and out of the house. In the past, we had to carry him to the house in the rain and snow. We now have a home aid to help Conner with basic needs like toileting, bathing and dressing.

Aug 05

Medicaid Matters for Kids Mondays - Rowan

Speak Now for Kids is celebrating Medicaid’s 54th birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Rowan’s mom, Kate. Rowan is a Speak Now for Kids Family Advocacy Day alum and current patient at Dell Children’s Medical Center of Central Texas.

I advocate for my child’s health care by speaking up for her needs. Though her disorder is rare, it does not make any of her basic needs any less crucial.

I advocate for Rowan’s health care because the health of my child means absolutely everything to me. I have seen my child dealing with what would be many parent’s worst nightmare.

I advocate for her health because it is my duty as her Mom to make sure she’s able to live the healthiest and happiest life possible.

Rowan was diagnosed with recessive dystrophic epidermolysis bullosa as a newborn, which means that she is missing the “glue” that holds her skin to her body. The surface of her body can blister and shear off leaving wounds like second-degree burns, so Rowan must be bandaged from the neck down to cover wounds and prevent infection. Dressing Rowan in clothes throughout her life has been a challenge as she could only wear certain types of clothes or shoes. Swimming in the pool and bathing means many hours of painful wound care for Rowan.

Jul 01

Meet Roshanae: 2019 Family Advocacy Day Child Champion

Roshanae is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Roshanae will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Roshanae is a policy wonk who loves to watch CSPAN—she even watches during her stays in the hospital!

Roshanae has been receiving treatment for sickle cell disease at UCSF Benioff Children's Hospital Oakland since she was diagnosed at age 4. Sickle cell disease gets worse with age, so Roshanae has had to endure more hospital visits as her condition progresses. Now 20, she continues to travel hundreds of miles from her college in Riverside to receive the care she needs in Oakland.

Jun 30

Meet Hailey: 2019 Family Advocacy Day Child Champion

Hailey is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Hailey will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Hailey is an extraordinarily strong minded 11-year-old who loves to sing and dance.

An unthinkable event happened when Hailey was a two-year-old, she fell in the bathtub and broke her neck. The accident had left Hailey paralyzed from the neck down, unable to move her arms and legs, and the long-term outlook was disheartening.

“They told us she wouldn’t ever talk, wouldn’t be able to eat on her own, wouldn’t be able to walk — wouldn’t be able to do anything,” said Hailey’s grandmother.

Hailey met Dr. Keane at Mt. Washington Pediatric Hospital (MWPH) who specializes in working with children with complex medical needs. Hailey started an intense course of weekly therapy, including physical therapy to help her move around and occupational therapy to help her with activities of daily living. She bonded with her therapists and looked forward to each appointment as a special sort of playtime.

Jun 29

Meet Conner: 2019 Family Advocacy Day Child Champion

Conner is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Conner will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Conner is fearless and determined. He loves to sing songs, especially Shimmy Shimmy Coco Pop from the movie Big, and the theme song of Beauty and the Beast!

Conner was born premature at 25 weeks and experienced many associated conditions including cerebral palsy, seizures, developmental delays and blindness. Despite being born at a hospital that had a NICU, Conner’s rare medical needs required him to be airlifted to the Children’s Hospital of Philadelphia (CHOP). Since the doctors at CHOP are trained to treat children with similar medical conditions as Conner, he began to show improvement.

Jun 22

Meet Jack: 2019 Family Advocacy Day Child Champion

Jack is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Jack will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Jack loves going for walks, playing with his sister and watching Peppa Pig.

Jack was born six weeks early. This young fighter spent about four months in the NICU at Yale New Haven Children’s Hospital and was eventually diagnosed with cerebral palsy. Today, he relies on seven specialists to get the care he needs.

Thanks to the doctors, nurses and specialists at Yale Children’s, he was able to progress from having a tracheostomy and being tube fed to being trach-free and eating by mouth— all in less than three years! Dr. Palazzo has played a huge role in Jack's progress and success. She’s patient, parent-oriented and goes above and beyond to ensure that all Jack’s needs are met and all options are explored.

Jun 21

Meet Paul: 2019 Family Advocacy Day Child Champion

Paul is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Paul will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Meet Paul! Paul is a special little 3-year-old whose favorite activities include brushing his teeth and taking baths. One of his favorite memories is meeting Santa at John R. Oishei Children’s Hospital!

Paul has spent a lot of time in the hospital during his short life. Before he was even born, testing found that Paul had Trisomy 21, or Down syndrome. When he was just 6 months old, the neurosurgery department at Oishei Children’s discovered that Paul’s spinal cord was tethered as they performed a routine evaluation to clear him for surgery. Without this timely discovery, Paul may not have been walking today. Doctors also discovered hydronephrosis, a kidney obstruction that required urologists to keep him under close supervision initially. Further, because Paul has Down syndrome, he was born with anatomical differences in his cranial structure that impacted his ability to breathe. Thankfully, the Ear, Nose, and Throat team at Oishei Children’s was able to remove his adenoids and tonsils at an early age to address these issues.

Jun 20

Meet Halle: 2019 Family Advocacy Day Child Champion

Halle is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Halle will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Halle likes to be cuddled, sit on the couch, and listen to her grandfather—Pops—play the piano. While she finds an incredible amount of joy in life, this 9-year-old faces many challenges every day just to survive and thrive as best as she can.

Halle was diagnosed with an extremely rare genetic change that affects the calcium channels. This rare condition causes developmental delays, hearing loss, seizures, stroke and other difficulties. Every day, Halle has to work hard just to breath, swallow and sit up.

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