Awareness Days

During the month of March, we celebrate National Cerebral Palsy Awareness Month to recognize and support the many individuals who live with Cerebral Palsy (CP). CP is a permanent physical disability impacting a person’s mobility and muscle strength. The degree of its impact ranges greatly on an individual basis, from mild to severe. Early intervention, therapies, use of Botox and even surgeries can help a person’s ability to deal with pain management and functionality in daily life. CanChild states that approximately 1 out of every 400 individuals in Canada are diagnosed with CP, and it is the most common physical disability in children.

Gavin’s Story – Shooting for the Stars

Gavin and his twin sister are 7 years old and were born six weeks prematurely. As preemies, baby milestones were adjusted to take into consideration their gestational age. His sister was meeting milestones when adjusted to their due date, but Gavin was not. At 18 months of age, his paediatrician referred him to Grandview Kids to see Dr. Hunt. He was diagnosed with spastic cerebral palsy, and Grandview Kids was able to provide his family with support through physiotherapy (PT), occupational therapy (OT), speech-language pathology, recreational therapy, and social work. He had difficulty in using his trunk and legs and holding his head up, and he currently uses a wheelchair for long distances, a walker, and ankle-foot orthotics for support. With continuous PT, he has increased his muscle strength and is now working on coordination and balance. OT helps him work on his fine motor skills through fun activities that develop his colouring, printing, pincer, and feeding skills.

Gavin’s parents recognize the way Grandview Kids has been there to support him and his family over the years. “It’s nice to see people still care. His therapists want him to succeed, so they go above and beyond!” says his dad, who also happens to have CP. “Each therapist brings their own unique ‘quirks,’ and it benefits him and pushes him more. They have great qualities and challenge him.” Gavin was able to take his first steps with his physiotherapist, and it wasn’t just one step, but five amazing first steps.

What does Gavin want to be when he grows up? His parents say that he is not letting CP keep his dreams modest. He is shooting for the stars and wants to be an astronaut. Gavin inspires his parents, who share words of encouragement with other parents of children with CP. “It might hurt in the beginning, but it’s worth it – push them! They come out stronger & smarter. They must think more and expend more energy than the average person, but it pushes their brain capacity. Have that ‘money is no object’ mentality. You will be rewarded, but be patient as it is not an overnight thing; it will take work.”

On March 21, we celebrate World Down Syndrome Day by showcasing the abilities, contributions, and experiences of people with Down syndrome. It also aims to educate, raise public awareness and advocate for acceptance and inclusion.

Down syndrome is a naturally occurring chromosomal arrangement that has always existed and is universal across racial, gender, and socio-economic lines. One in every 781 babies born in Canada has Down syndrome.

The goal is to make the world a more inclusive place for individuals with Down syndrome, and we can start by using appropriate language when referring to any group of people. Correct terminology helps to reduce the chances of prejudice, misconceptions, and stereotypes. The Canadian Down Syndrome Society has a helpful guide for talking about Down Syndrome.

Client Story:

Meet 5-year-old Clara! She enjoys listening to music, working with puzzles, building things and is a skilled reader. Clara also has Down Syndrome, but her diagnosis does not define her. In fact, with extra care and understanding, she will show you how smart and determined she can be!

Depending on the task, she can do and accomplish many things quite well and independently. She requires help in some areas, but given the time to work with her, “Clara can do great things in her own way, on her own time,” says Clara’s mom, Tanya.

Tanya (mom) is holding Clara (client) in her lap.

Clara accesses Grandview Kids services such as Speech-Language Pathology, Physiotherapy, Occupational Therapy and Social Work support. She has been working on improving her social skills and communication skills. Clara and Tanya’s Grandview Kids experience has been “absolutely positive all around,” and “Grandview Kids is a great place to start to figure out the journey.”

They made lots of connections with different services and teams that helped Clara move forward. Tanya knows that she can approach Grandview Kids and say, “This is where we’re at, and I need the help, and the help is always there.” This is why she “wholeheartedly and will always be a champion for Grandview Kids.”

Join us and others to take a stand against bullying and be an advocate for kindness and inclusivity by wearing a pink shirt on February 28, 2024.

Pink Shirt Day is celebrated on the last Wednesday in February every year to promote anti-bullying. The initiative was started in 2007 in small-town Nova Scotia, after a Grade 9 boy was bullied for wearing a pink shirt. Other students took a stand against this bullying, distributing pink shirts to all Grade 9 boys in an act of solidarity. This simple act of kindness spread across the school, community and country, becoming a global movement to support children and youth affected by bullying.

Bullying is a form of aggression where there is a power imbalance; it is behaviour that makes the person being bullied feel afraid, alone or uncomfortable. This can include such behaviours as being teased, insulted or excluded. There are many different types of bullying, ranging from being made fun of, to having one’s property destroyed, to cyberbullying-type measures such as having hurtful information posted on the Internet.

Having needs due to neurological, developmental, physical and mental health conditions can add to the challenges children and young people face as they learn to navigate social situations in school and in life. While bullying and cyberbullying is an unfortunate reality for many young people, children with physical, communication and developmental needs are at greater risk for being targeted by their peers.

That’s why Pink Shirt Day is so important to Grandview Kids!

We all have a role to play in making the community accessible and inclusive for all abilities. Becoming an Inclusion Ally is one way you can make a difference!

An Inclusion Ally is someone who listens to and supports people with different needs and abilities, but does not have this lived experience. It’s not a label you give yourself. An Inclusion Ally is always learning and unlearning. An Inclusion Ally finds a way to make sure everyone feels like they belong.

Don’t know where to start to combat bullying? We can help!

Our Ability Acceptance Program is available to local businesses, schools, licensed child care centres and community groups, with the goal to enhance the understanding and acceptance of all abilities and promote inclusive practices. Request a presentation!

Remember, sometimes disabilities are visible, but other times they may be invisible. This includes brain injuries, chronic pain, mental illness, gastro-intestinal disorders, and much more. Because they’re not obvious to spot, invisible disabilities may be overlooked and misunderstood. That’s why it’s important to treat everyone with respect, kindness and understanding.

Together, we can make our classrooms, schools and communities more inclusive for people of all abilities!

Written by IDEA committee member and Grandview Kids parent, Abby V.

Rare Disease Day is an international event held on February 28 to raise awareness about the impact of rare diseases on people’s lives and to emphasize the need for research. Canadian families with rare illnesses are facing extraordinary challenges. These include misdiagnosis, unnecessary surgeries, social isolation, financial hardship and lack of treatment options.

Zoe’s Story

Like many people, Sarah-Lynne and Erik followed the traditional route of starting a family. They got married, bought a house, and decided that they were ready to start adding children to their family. They were surprised with identical twin boys in 2016, and always wanting a large family tried for a third child. Zoe was born in October 2018 and perfectly completed their family, but life as they knew it would not be deemed “typical” again.

Zoe was discharged from the hospital as a healthy baby, only to be readmitted twice for jaundice and weight loss. On the family’s second emergency visit, she was admitted to the NICU for feeding and weight loss support. Suddenly and without explanation, Zoe went into distress. She had a perforated bowel and was in emergency surgery within hours of being transported by ambulance to Sick Kids Hospital. She was declared septic with the possibility of meningitis. For the next nine months, her parents would not have any answers as to what was causing Zoe’s illness. After fiercely advocating for their daughter and conducting tests that are not offered in Canada, Zoe was finally diagnosed with a rare Congenital Disorder of Glycosylation (CDG), SLC35A2-CDG.

Zoe is the 49^th person in the world to have this strain of CDG. She is now five-years-old, and her diagnosis continues to affect her daily living. She has severe global developmental delay, muscular hypotonia, Epilepsy, Cortical Visual Impairment (CVI), cervical spine instability, risk of spinal cord compression, obstructive sleep apnea, GERD, and scoliosis, and is G-tube fed. Her disease requires round-the-clock care and medications to keep her healthy and comfortable as everything, including her sleep, independence, mobility and communication, is affected.

Mom, Sarah-Lynne, holding Grandview Kids’ client, Zoe, on her lap. Thay are surrounded by their family.

At Grandview Kids, Zoe receives Occupational Therapy, Physiotherapy, Speech-Language Pathology, and Recreational Therapy and attends Grandview School. Early intervention before the age of six is a necessity as this is the time most brain development occurs. Zoe’s parents continually fundraise for her private therapies and medications but also give back a portion to organizations that have made a direct impact on Zoe’s life. “Sky is the limit. We can’t put an amount on her quality of life, especially if more therapy now means this might change the whole trajectory of her life,” says her mom.

Living with a rare disease means every day is a rollercoaster journey of emotions, but Sarah-Lynne has learned that “grief and joy can coexist.” A balance must be found to be able to enjoy the joyous moments but allow the reality that the life you expected is not what it is. You can grieve the life you wanted for your child and your family, but you can also see through a new lens of compassion, kindness, strength and resiliency. Zoe’s diagnosis is the “hardest but most rewarding thing I will ever experience. I am a better person because of it, and so is everyone else around Zoe.”

Congenital Heart Defect (CHD) Awareness Week is held every year from February 7 to 14. According to the Centre for Disease Control and Prevention, CHDs are the leading birth defects that cause death in infants and adults. Approximately 1% of births per year are affected by CHDs, which exist from birth and often affect the structure and shape of a baby’s heart. Since the condition is so prominent and is a leading cause of death in children, it is very important to make medical professionals, researchers, families, and the general public more aware of the condition.

Matthew Has Heart

Matthew is a social 15-year-old teenager who likes to observe the world around him and to watch and play basketball. When his mom, Melodie, was only 17 weeks pregnant, she received the news that Matthew would be born with Down Syndrome. A few weeks later, a specialized ultrasound also confirmed a CHD called Atrioventricular Septal Defect (AVSD). This meant he had a large hole in the centre of his heart, and the valves meant to control the blood flow between the heart chambers might not be formed correctly. This early diagnosis gave his family the opportunity to educate themselves and meet with many specialized doctors before being thrown into the situation.

Baby Matthew in the NICU with his mom, Melodie, watching over him.

Matthew was born two weeks earlier than expected, thwarting medical plans, but was fortunate enough not to need immediate surgery. He spent a few weeks in the NICU and, at fix months of age, had his open-heart surgery. “That day was one of the hardest days of my life,” recalls Melodie. “I handed over my five-month-old baby boy to a nurse at Sick Kids Hospital, not knowing if I would get to see his beautiful little face again! Five and a half hours later, we received the news that the surgery was a success! The eight days that followed had some terrifying moments, but in the end, we brought home a healthy baby boy that is now 15-years-old and the centre of our universe!”

When asked what advice Melodie would give to families with a new diagnosis, she said, “Make sure to ask questions and don’t be afraid to tell their doctors if you aren’t clear on what they are saying. Our cardiologist drew us pictures, and I remember we took those photos and had dinner with family afterwards at a restaurant, where we used those photos to explain it to the grandparents. We made sure to educate ourselves as much as we could. We reached out to other families who had been where we were, and it helped so much. Just knowing you aren’t alone means so much. This is where Grandview Kids excels, and although we weren’t a part of Grandview Kids at this exact time, it paved the way for us to be so greatly involved with Grandview Kids as we knew the importance of helping other families just as we were helped.”

15-year-old Matthew holding a basketball.

Melodie and her family continue to be strong advocates for Matthew. They are helping others walk the same journey through family engagement and the power of storytelling. “Matthew has one of the biggest hearts I know,” says Melodie. “It may not be a perfect heart, but it’s a strong and loving heart. He is sweet, caring and sensitive. He loves people, and people love him. They see his perseverance, his courage, and his strength. We have Grandview Kids to thank for helping us tell our story many times and inspiring people.”

Written by our Registered Dietitian, Heather-Ann B.

Feeding Tube Awareness Week is observed worldwide during the first week in February and takes place this year from February 5 to 9. The feeding tube, a masterful invention of modern science, has saved millions of lives and increased the chances of infant survival at a tremendous rate.

In 2011, the Feeding Tube Awareness Foundation designated a week to raise awareness about the importance of tubes in the lives of people. Each February, families of patients and survivors come together to share the positive impact of feeding tubes in their lives and challenge the stigma around the same.

What is a feeding tube?

Feeding tubes are another way that children and youth can receive nutrition, water and medications by mouth. These tubes provide a route to the stomach and/or small intestine when a child or youth cannot eat or drink enough to support their nutrition needs or if they cannot eat or drink safely by mouth. The length of time a child or youth has a feeding tube can vary, as some may require short-term assistance with feeding, or others may depend on the tube for many years or for life.

There are different types of feeding tubes that may deliver nutrition to different places in the body. Feeding tubes can send nutrition to the stomach or into the jejunum (small intestine) and may either enter through the nostril (NG-tube) or directly through a surgical opening in the abdomen (G/GJ-tube).

Children and youth may either receive all or some of their nutrition by feeding tube depending on how much they can eat or drink by mouth. Some may only use the tube for hydration or medications. With support from their healthcare team, families can work towards finding the right route for feeding, the type and amount of formula or food to put through the tube, and the feeding schedule that works best for the client and family.

Feeding tube support at Grandview Kids

Grandview Kids offers multiple services that can support tube feeding management. A variety of clinicians may work together to help families with their tube-feeding needs.

Nutrition Clinic: The Registered Dietitians at Grandview Kids’ Nutrition Clinic work with families to ensure nutrition needs for growth and development are being met through tube feeding. Dietitians can also support problem-solving when difficulties with tolerance to tube feeding occur, such as vomiting or constipation.

Feeding Services: Children and youth with feeding tubes who are also working on oral feeding skills or safety may receive services from the joint OT/SLP feeding teams or receive feeding counselling from their core OT/SLP team members.

Complex Feeding and Nutrition Clinic: As of December 2023, the Complex Feeding and Nutrition Clinic started at Grandview Kids to provide additional support for children and youth requiring medical and dietetic support for their complex oral and/or tube feeding needs. In this clinic, Dr. Julie Johnstone and Heather-Ann B., RD, work closely with their OT and SLP colleagues for a multidisciplinary approach to feeding.

Brock’s journey with his G-tube

Written by Grandview parent and mom, Cassandra R.

Brock’s journey began at age six when an unfortunate tumble down the stairs resulted in multiple brain bleeds, complicating his ability to eat and drink. During his hospitalization, Brock began to lose weight, prompting the medical team to insert an NG-tube to ensure he received the essential nutrients a young boy needs.

Despite our hopes, Brock’s eating difficulties persisted even after we left the hospital and completed rehabilitation. Concerned for his well-being, I became his advocate, pushing for the installation of a G-tube to manage his nutrition and safeguard his health.

The waiting list for a G-tube was lengthy, but patience bore fruit. Brock was eventually equipped with a T-tube connection, marking the start of a new chapter. Although most patients return home the day after the procedure, Brock stayed a bit longer for monitoring due to a minor concern during surgery. Fortunately, everything turned out fine, and we were soon back home.

Our journey didn’t end there. Brock was placed on another waiting list, this time for an upgraded G-tube, the Mic-Key. After six months of anticipation, we received the call that it was Brock’s turn. The surgery went well, and after a few days in the hospital, ensuring he was stable, we returned home.

At the time of discharge, Brock weighed a mere 30 kilograms—a figure that concerned us all. But with time, love, and the right nutritional support, he began to gain weight. At his latest check-up, the scales told a story of success; Brock had gained weight and was thriving.

Looking back, the wait and the worry now seem like small hurdles in a much larger success story. As he approaches his 11th birthday, Brock is a picture of health, a testament to the life-sustaining power of medical intervention. The G-tube was more than a medical device; it was a lifeline. Without it, Brock’s story could have been very different, as he was at significant risk of choking.