Big Sister Gives Back to Honor CHOC Children’s

Lily’s big sister, Makenna loved her before she was even born. She was actually the one who chose Lily’s name. Their bond only grew stronger when Lily was born with a rare chromosomal abnormality requiring specialized treatment and extra help at home.

Lily and Makenna
Lily and Makenna

“Even though Lily is different than Makenna and her brother, Ethan, they just see her as their sister,” says mom, Danielle. “They’ve helped Lily learn sign language and practice pronouncing words.”

Lily’s entire family has been involved in her care from day one. Makenna, age 11, would regularly tag along to Lily’s physical and occupational therapy sessions. She was keen to learn how she could help take care of her sister. She watched closely as physical therapist Cathy Lopez taught Lily how to move her body, and occupational therapist Lauren Newhouse taught her how to eat solid food (her favorite is avocado).

Seeing the way CHOC’s rehabilitation services team cared for Lily and the progress she made in therapy inspired Makenna to give back.

Makenna’s fundraiser

When Makenna’s school hosted a fair for students to showcase causes important to them, she chose to honor CHOC. She and a few friends watched YouTube videos to learn origami and created dozens of animal and emoji-themed bookmarks. She quickly sold out of them and donated the proceeds to the rehabilitation department at CHOC.

Lily backpack

“Raising money for CHOC is the least I can do to thank them for taking such good care of my sister,” Makenna says. “Whenever we are there for an appointment, all the doctors, nurses, therapists and security guards are so nice to us.”

Organizing this fundraiser has inspired Makenna to continue her philanthropic streak.

“It was feels good to do it and it was so easy. It makes me want to do more to raise more money for CHOC,” she says.

cahty-lily-makenna-donation
Lily and Makenna present a Makenna’s fundraiser proceeds to physical therapist Cathy Lopez.

Lily’s diagnosis and early days

When Danielle and her husband, David, found out they were expecting their third child, they were thrilled. A few months into Danielle’s pregnancy, a blood test showed that Lily had Turner Syndrome, a genetic condition affecting a female’s growth and fertility. That turned out to be a false positive, but a follow-up amniocentesis correctly diagnosed Lily with Mosaic Trisomy 12, a rare chromosomal abnormality about which not much is known.

Lily was born full-term via C-section at a local hospital. Immediately after birth she had trouble breathing and turned blue, and she was quickly whisked away to that hospital’s neonatal intensive care unit (NICU).

Lily needed a ventilator to help her breathe. She also required use of a CPAP, also known as continuous positive airway pressure, which helped keep her airway open. Danielle pumped her breastmilk so Lily’s care team could nourish her through a feeding tube.

Just outside the hospital, CHOC geneticist Dr. Neda Zadeh was starting to make her way home for the day when she heard about Lily’s condition.

“Dr. Zadeh was on her way out, but she turned around and came back to the hospital to run more tests and get a better idea of what was affecting her,” Danielle recalls. “Dr. Zadeh is amazing.”

In the first few days of Lily’s life, her parents weren’t sure if she would make it or not. When she was 3 days old, she was transferred to CHOC’s NICU for a higher level of care.

Lily spent the next 24 days in the NICU. When she learned how to breathe and eat on her own, she was ready to go home for the first time.

While the family spent much of their daughter’s first month in the hospital, NICU nurses made sure the family didn’t miss out on their first holiday together — Father’s Day. With her nurses’ help, Lily created a special Father’s Day craft for David using her footprints.

These days, Lily sees a mighty brigade of pediatric specialists at CHOC on a regular basis. Although not much is known about her Mosaic Trisomy 12, her care team remains fully committed to ensuring she is safe and healthy. In addition to Dr. Zadeh, Lily is under the care of neurosurgeon Dr. William Loudon, endocrinologist Dr. Timothy Flannery, and otolaryngologist Dr. Nguyen Pham. She also sees a neuro-ophthalmologist at UC Irvine.

Danielle is proud of the progress Lily has made during therapy at CHOC and seeing how that progress sparked Makenna’s giving spirit makes her proud as well.

family

“Makenna probably doesn’t realize this, but Cathy and Lauren at CHOC really cared for our entire family, not just Lily,” Danielle says. “The entire rehabilitation team at CHOC was incredibly supportive to our entire family. They were the weekly and sometimes daily reminders that we could do it. They impacted our entire family in a way that words simply cannot express. When we look back on Lily’s first years, they are in our memories and always will be!”

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Warming Up to Wound Care: Nico’s Story

Nico’s birth was full of surprises for his mom Jennifer. The biggest one being that he was a boy, when all along she had been expecting a daughter. That wasn’t the only unexpected realization. He lacked a fully-formed tibia (the bone that connects the knee and ankle), was missing his left thumb, and had several structural heart disease defects, none of which had been diagnosed prenatally.

Unexpected heart defects

Nico was diagnosed with unbalanced AV Canal (AVC), Anomalous Pulmonary Venous Connection (APVC), and Ventricular Septal Defect (VSD) due to the underdevelopment and abnormal formation of his heart and major blood vessels. Jennifer learned early on that her son’s heart conditions were treatable with a series of open heart surgeries and/or cardiac catheterization procedures.

The day after he was born, Nico was transported to CHOC Children’s. He underwent his first heart surgery when he was only three days old, under the care of Dr. Richard Gates, a CHOC Children’s pediatric cardiothoracic surgeon and co-director of the CHOC Children’s Heart Institute. Nico’s second heart surgery happened before his first birthday, and he’ll have a third heart surgery later this year.

nico-today
Nico, who is today a happy pre-K student, has already endured several surgeries.

“Despite Nico’s significant heart condition, he has responded well to each surgery, becoming stronger right before our eyes,” says Dr. Gates. “I look forward to his final surgery which should allow him to continue to be active and happy.”

Jennifer knew that someday Nico would need to have his leg amputated below the knee, Since Nico’s tibia bone connecting his knee and ankle wasn’t fully formed, it meant his ankle didn’t have the support it needed. Her original plan was to have that surgery performed at another facility closer to their home, when she was told they weren’t comfortable operating on his leg due to his heart conditions. Soon after, she and Nico were at CHOC meeting an orthopaedic specialist to discuss a prosthetic for his leg.

“I didn’t know what we were going to do, but during his prosthetic appointment, we learned CHOC would be comfortable performing his surgery, and could schedule it for just a few weeks later! I was thrilled we could do it earlier because I don’t want him to get to a point later on in life when he remembered or missed when he had more of a leg,” Jennifer recalls.

Shortly before his third birthday, Nico underwent surgery to amputate his leg below the knee under the care of Dr. Francois Lalonde, a CHOC Children’s pediatric orthopaedic surgeon.

nico-toy-after-wound-care
In addition to stocking our holiday toy store, donations that pour into our annual holiday toy drive bring joy to patients year round. After one wound care appointment, Nico is surprised with a new toy for being so brave.

After spending just one night in the hospital ―including a checkup with his cardiologist, Dr. Nafiz Kiciman, to make sure his heart looked alright after surgery― Nico was discharged.

“Nico is a brave and courageous young boy with an easy-going personality,” says Dr. Lalonde. “He has demonstrated great resilience and coping skills following surgery and wound care, and is already adapting well following the amputation of his left ankle.”

His doctors told his mom he should take it easy for a few days, but as soon as his cast was removed, he was quickly back to his old habits of climbing on furniture and jumping on pillows.

“I never want my son to have the mentality that he is limited,” Jennifer says. “Kids can sense if their parent is worried or scared, and I didn’t want him to feel like that. He’s too young to feel anxious on his own, so I made sure I didn’t bubble wrap him and let him play like his normal self.”

The importance of pediatric specialists for wound care therapy

The week after surgery, Nico and his mom started coming back to CHOC a few times per week for wound care, where specially-trained pediatric physical therapists would clean and rebandage his leg. In between those appointments, Jennifer cared for the wound at home.

“At his first appointment, he saw a new person walking into the room with all these supplies he had never seen before, and it was a lot for him to take in. He covered his eyes and wiggled around during the appointment,” Jennifer recalls.

To make Nico feel at ease, his physical therapist Sandy started letting him help her care for his wound.

nico-before-and-after-wound-care
Left: Nico was naturally apprehensive during his first wound care appointment, before he realized it didn’t hurt and could even be fun. Right: Nico during a subsequent wound care appointment, where he was rewarded for his bravery with a larger-than-life Mickey Mouse balloon.

“I wanted to be honest with him about what they’re going to do at this appointment, but frame it in a positive way so he knows it’s for his own good and he doesn’t have to be scared. It’s important to explain things in a way that he will understand,” Sandy says. “If you’re honest with the child, they’ll start to trust you. If you say, “this won’t hurt” and it hurts, then you’ve lost their trust.”

Once Nico was involved, he immediately understood that he didn’t have to be scared of wound care, and that it could even be fun.

Now, when Sandy finishes one step, he grabs the next supply that she’ll need. He almost sees it as a game. “Ok Nico, we’re done with this part. What part is next?” Sandy says to him.

nico-during-wound-care-appointment
To help calm Nico’s fears during wound care, his pediatric physical therapist involved him in the process.

These days, before each appointment, when Jennifer asks Nico if he wants to go see Sandy, he squeals and claps with delight.

“I tell him, “Let’s go see Sandy! She’s going to clean your owie and make it feel better.” My positive mentality was contagious for him. I was excited, so he was excited,” Jennifer says. “If the kid sees the parents squeamish during wound care or sees a worried expression on their face, then the kid will be apprehensive. Whenever we come to wound care appointments I make sure I speak to him in a very upbeat, positive way so he feels like physical therapy is fun and not something to be scared of, which helps him to relax. Positive energy is contagious.”

Continuity of care has also helped Nico feel more comfortable.

“It has helped him to have the same one or two physical therapists each time, so it’s a familiar face.”

nico-prosthetic
Nico’s Star Wars-themed prosthetic.

Once Nico’s leg was fully healed from surgery, he resumed physical therapy, was fitted for a prosthetic, and started walking. In between all of that, he continues to love anything Star Wars, playing Ninja Turtles, coloring and attending pre-Kindergarten classes.

Read FAQs about pediatric wound care at CHOC

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Is Chronic Pain Real? Myths of Chronic Pain

By Amanda Traylor, physical therapist at CHOC Children’s

amanda-traylor-physical-therapist-choc
Amanda Traylor, physical therapist at CHOC Children’s

Every year in October, the American Physical Therapy Association celebrates National Physical Therapy Month and this year, we’re highlighting the role physical therapy plays in treatment and management of chronic pain. Pediatric chronic pain is more common than you may think. In a 2014 international survey of pain in adolescents, approximately one third of adolescents reported musculoskeletal pain on a monthly or more frequent basis. It can start after an injury, illness, or without a trigger at all. Chronic pain can have a range of effects, from the mental stress of pushing through pain to participate in physical activity to avoidance and removal from activities including school and sports. At CHOC, the rehabilitation team frequently treats children and adolescents with diagnoses of chronic pain, complex regional pain syndrome, amplified pain, fibromyalgia, and pain associated with hypermobility. Here are some common myths associated with chronic pain, debunked.

Myth 1: Your pain is all in your head.

While it may be true that there is no damage to or illness in your body, the pain is real. Children and adolescents frequently express their frustration with the disbelief and doubt projected onto them about their pain. But the tricky thing is, the head is in charge of your pain. Whether there is tissue damage or not, your brain is the one that perceives the pain signals and interprets them. While the brain is the command center of your pain, the nerves are the messengers. Without the brain and nerves, there would be no perception of pain.

Myth 2: Rest will make things better.

During an acute pain episode when there is damage to the body in some way, pain is a protective response. It lets us know when to rest and allow healing and teaches us to avoid dangerous situations. With chronic pain, this learned response becomes harmful. The more the body rests, the more feedback is sent that the body is injured. Movement can help counteract that feedback and return you to the activities you enjoy. Your physical therapist can teach you how to move in the correct ways to protect your joints, prevent injury and restore your ability to move around in your own environment.

Myth 3: Pain medication will help my pain.

Prolonged use of pain medication has been a topic of interest in the past few years due to the opioid epidemic. As the body builds up tolerance to commonly used pain medications, higher and higher doses are needed for relief. With a chronic pain, this could yield harmful side effects and does not address the cause of the pain. In some cases, other medication options may better address the origin of chronic pain. These options, including non-pharmacological management, should be discussed with your physician.

Myth 4: Physical therapy alone will help.

Physical therapy is an excellent tool to address movement dysfunction that occurs as a result of prolonged pain. It can help return patients and families back to the activities they enjoy through a variety of strategies tailored to each individual’s needs. Physical therapy could include strengthening, balance training, stretching, endurance training, relaxation strategies, neuromuscular re-education using electrical stimulation, and more. But physical therapy alone is not the gold standard. A pain psychologist and physician are vital to the team. A pain psychologist can help address the effects that chronic pain can have on your life as well as decrease the amount of pain signals sent to your nerves via cognitive behavioral therapy.

Myth 5: The pain only affects the patient.

Chronic pain has major impacts on not only the individual experiencing it, but also their family and friends. Parents see the effects of the pain and want to help, but frequently feel that they are at a loss. Siblings want their sister or brother to go back to the role they played before the pain started. Friends at school can see the individual pulling away, limiting themselves from the activities they previously enjoyed together. When a child is affected by pain, their loved ones are affected as well. The parent, family, and friend support through the treatment and management of this diagnosis is essential. Frequently, the medical team incorporates the entire family in our approach and their participation can make the biggest impact on the individual’s success.

Learn more about rehabilitation services at CHOC

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Rehabilitation Therapists’ Role in a Pediatric Environment

By Leesha Augustine, physical therapist; Hema Desai, speech language pathologist; Erin Keller, speech language pathologist; Adriana Rusch, occupational therapist; and Vicky Vu, occupational therapist at CHOC Children’s

The field of rehabilitation services includes a wide variety of opportunities including hospitals (where therapists can treat patients in any department), schools, and outpatient facilities including specialty facilities in the fields of mental health, sports medicine, wellness programs and rehabilitation/skilled nursing. Rehabilitation treatment can be provided for a variety of reasons throughout someone’s life from infancy through adulthood. The Rehabilitation Services team at CHOC Children’s includes physical therapists (PTs), occupational therapists (OTs), and speech-language pathologists (SLPs). Each therapy discipline also has licensed therapy assistants.

What training is required to work in pediatric rehabilitation services?

The therapist track for each discipline requires graduate school in order to be licensed by their respective national boards. The Doctor of Physical Therapy (DPT) Program is a three-year post baccalaureate program. The traditional OT program is a two-year master’s degree, with the option to further specialized training with a two-year clinical doctorate (OTD). SLP programs are also a two-year master’s degree, along with completion of a nine-month clinical fellowship following graduation. The assistant track for each discipline require a two-year associate degree including a hands-on practicum and licensing exam.

What does a physical therapist do?

They have the opportunity to work with patients and their families to help them restore function to allow them to return to school, sports, playing with friends, work and family events.

rehabilitation
After surgery, physical therapy played a big role in Sydney’s life. Her PT, Robin, is a two-time Olympic medalist and helped Sydney, a fellow athlete, connect with her treatment.

What does an occupational therapist do?

Occupational therapists help others participate in daily activities as independently and safely as possible. They also help children with sensory difficulties, fine motor skill delays, oral motor and feeding skill delays, and dressing difficulties.

rehabilitation
Occupational therapists help others participate in daily activities as independently and safely as possible.

What does a speech language pathologist do?

The role of a SLP is to prevent, assess, diagnose and treat speech, language, social communication, cognitive-communication and feeding/swallowing disorders so that individuals can interact with others to the best of their ability.

rehabilitation
Nicole, a speech therapist at CHOC, works with patients with feeding and swallowing disorders, speech delays, brain injuries, and vocal cord dysfunction.

Where would you find rehabilitation services in a hospital setting?

The depth and scope of Rehabilitation Services at CHOC Children’s Hospital is vast, with members of the department working within most service areas of the hospital, including: four specialized intensive care units, the hematology/oncology unit, the medical/surgical unit, and the Neuroscience Institute.

Members of the rehabilitation team provide developmental support for many infants in the neonatal intensive care unit (NICU). You may find a SLP or an OT coaching a parent on how to feed their baby for the first time, an OT making custom hand splints to help facilitate improved hand function, or a PT may provide specialized wound care  or assist a patient out of bed for the first time. The rehabilitation team will work with children and families in the pediatric intensive care unit (PICU) so that a parent can feel safe holding their child after a long-term intubation, a patient with a brain injury can say, “I love you” to his family, and play with his favorite toys.

Children with prolonged hospitalizations due to cancer treatment may receive rehabilitation therapy to encourage developmental skills as well as to recover from the effects of their illness and treatment. While they are admitted to the hospital, we work closely with them to help them regain function in a variety of areas: gross motor skills, fine motor skills, daily activities such as dressing themselves and taking steps, feeding and swallowing, eating and drinking safely, and being able to communicate with their friends and family.

As much as rehabilitation professionals love working with children and their families while they’re in the hospital, the primary goal of this team is to facilitate a safe discharge home and to enable our patients and families to participate in the activities that are most important to them.

Our Orange campus also has a multidisciplinary outpatient rehabilitation department including PT, OT, ST, hand specialist, feeding and wound care therapists. Here, our PTs, OTs and SLPs keep working with our patients after they are discharged from the hospital, as well as patients that are referred for pediatric specialty care from their pediatrician. You will also find PTs, OTs and SLPs working in our ambulatory care clinics, and serving as clinical instructors in their graduate and assistant programs.

No matter the setting for rehabilitation services, treatment goals always have the same common theme― helping kids enjoy doing the things they like best like riding a bike, drawing, or even being able to eat a cupcake!

Learn more about rehabilitation services at CHOC

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At-Home Wound Care Tips for Parents

By Ruchi Bagrodia, physical therapist at CHOC Children’s

Did you know that the physical therapy team provides wound care for the kids at CHOC Children’s?

Part of their scope of practice, both physical therapists and physical therapist assistants complete coursework in wound management during their higher level education. Several PTs and PTAs at CHOC have received specialized training in wound care and many have gone on to receive board certifications in wound care. With this training, a therapist is able to evaluate wounds, decide on the best treatment, and create a comprehensive wound care plan in collaboration with the patient, family, and medical team.

Physical therapists are able to use their expert knowledge of anatomy, tissue healing, movement and positioning to develop an individualized plan of care that also aims to improve movement and function. Successful wound healing may allow a child to more quickly return to school, participate in gym class and enjoy a summer trip to the beach with their family.  The ultimate goal of physical therapy is to restore function and allow people to get back to the things they love doing!

How do PTs provide wound care at CHOC?

At CHOC, PTs and PTAs provide wound care services for kids on both an inpatient and outpatient basis. During an evaluation, a PT will decide how to best clean, dress, and protect the child’s wound, and also provide recommendations to the parent to encourage wound healing and to prevent complications.

Here are some tips to remember when caring for your own minor wounds or skin injuries at home:

  • Keep dried scabs moist using a healing ointment or petroleum jelly for faster healing time. While it may be challenging, try your best not to pick at scabs!
  • If a wound is open (appearing wet, bleeding or draining liquid), cover it with some type of bandage. Leaving it open to air will increase the risk of infection.
  • Common signs of infection include redness, swelling, pain and warmth. Call your doctor if you notice an increase in signs of infection that are not already being treated.
  • When using over-the-counter antibiotic ointments for minor cuts and scrapes make sure to follow the dosage instructions. It is not recommended to use many of these ointments for more than seven days unless stated by your doctor. Many people have allergic reactions to triple antibiotic ointments. If you notice a wound is getting worse with an ointment, stop using it and talk to a health care professional.
  • Hydrogen peroxide and rubbing alcohol are commonly used to clean wounds, although both are damaging to your healthy skin cells. Instead, simply use mild soap and water to clean a cut or scrape.
  • Different types of sandals, shoes, plus foot and ankle braces can all cause areas of redness caused by too much pressure to the skin. If the redness does not go away after 15 minutes upon removing the pressure, the fit needs to be modified to avoid further injury to the skin.
  • Nutrition makes a difference in wound healing! Incorporate foods that are high in protein, Vitamins A and C, and Zinc into your diet to help with healing. Learn more by visiting ChooseMyPlate.gov for tips on how to create a balanced diet.

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