Adrian Polidano

AlayaCare is our new Electronic Health Record (EHR) technology that will replace our existing software. AlayaCare is a software solution that spans clinical documentation, administration functionality, client and family portals, mobile care functionality and more. Over the last several months, many members of Team Grandview have participated in training sessions to prepare for the move to this new system. AlayaCare will modernize and simplify our clinical staff’s tasks and processes, notably the documentation they capture during each client visit.

Scheduling update

Starting Wednesday, January 31, 2024, Grandview Kids will be transitioning our old EHR to AlayaCare for a brief period. Due to this transition, you will not be able to reschedule appointments until this transfer is complete. Once the transition is complete and our scheduling capabilities return to normal, an update will be issued on Grandview Kids’ Facebook, Instagram and X pages. Please be advised that we can still accept and process appointment cancellations during this transition.

Additionally, there will be a pause on our automated reminder calls advising you of your appointments. As this feature in AlayaCare is still in development, please stay tuned to our social media pages (linked above) for news of this exciting new feature.

Below is a brief series of frequently asked questions to help you learn more about AlayaCare

Why is Grandview Kids transitioning to AlayaCare?

Empowered Kids Ontario (EKO), the association representing Ontario’s publicly funded child development and rehabilitation sector, was contracted with the Ontario Education Collaborative Marketplace to source a new EHR for all member organizations (which includes Grandview Kids). Their goal was to select a new vendor that offers member organizations an EHR that is modern, efficient and encourages collaboration. Last year, all Children’s Treatment Centres in Ontario, including Grandview Kids, provided feedback on different vendors before ultimately agreeing upon AlayaCare as the preferred EHR.

How will AlayaCare improve service delivery?

AlayaCare will modernize our current EHR environment, enabling our clinical staff to input critical client information more efficiently than before. The introduction of AlayaCare will also allow Grandview Kids to develop a portal for clients and/or caregivers to access information relating to their care.

Please note that the portal for clients and/or caregivers will not be available immediately. We plan to leverage AlayaCare’s enhanced client-facing functionalities as we continue to build our future state.

Will the transition to AlayaCare affect my service?

You will experience the same high-quality care and service from Grandview Kids, and we’re committed to making the transition smooth for our clients and their families. Entering your information into the system may take a few additional minutes over the next few weeks, and we appreciate your patience as we shift to the new system.

Will the Grandview Kids ensure my privacy during this transition?

Grandview Kids is dedicated to ensuring the highest level of privacy while ensuring we provide the best possible care for our families. We are committed to protecting our clients’ health data and follow strict protocols set out by Ontario’s Personal Health Information Act (PHIPA). While migrating our existing EHR, we are using advanced encryption technologies and robust authentication methods to secure the transfer of sensitive health data through our trusted partner organization. AlayaCare, our new EHR, uses the latest technology to store, organize and access client data securely while maintaining the confidentiality of all personal health information. Secure procedures are implemented to identify and address potential vulnerabilities in the migration process, minimizing the risk of data breaches. Grandview Kids has several policies for all staff addressing confidentiality and client privacy rights.

For more information on how Grandview Kids is committed to protecting your privacy, please visit our Privacy page.

Where can I get more information about AlayaCare?

Please visit the AlayaCare website to learn more about the EHR.

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.

In February, we acknowledge Black History Month, World Hijab Day, Eating Disorders Awareness Week, Missing Women’s Memorial March, and International Childhood Cancer Day. Read more about each date of significance below, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

Black History Month

February is dedicated to observing Black history and celebrating the achievements of Black communities and individuals. This month, people across Canada participate in events and festivities that honour the legacy of Black people in Canada and their communities. The theme for Black History Month 2024 is Black Excellence: A Heritage to Celebrate; a Future to Build.

Did you know? Hallie Quinn Brown, born in 1850, was an elocutionist and is considered by many to be the first Black Speech-Language Pathologist in America. Hallie utilized her skills in linguistics to improve the early literacy and language of Black children living on plantations and taught thousands of Black adults the power of using spoken language to enact change for social justice.

Learn more about Black History Month here!

World Hijab Day: February 1

As we approach World Hijab Day on February 1, it presents a meaningful opportunity for us at Grandview Kids to enhance our understanding and appreciation of the cultural and religious practices of our Muslim colleagues, clients and their families.

Initiated by Nazma Khan in 2013, World Hijab Day is dedicated to raising awareness and fostering understanding about the hijab, which is a head covering worn by many Muslim women as part of Islamic modesty. This practice often includes wearing loosely fitted clothing to avoid attracting attention from non-mahram (men whom they can marry). At Grandview Kids, recognizing the significance of the hijab is crucial in ensuring our Muslim clients, caregivers and staff feel safe, respected and free from fear.

This image has an empty alt attribute; its file name is Screenshot_20240125-232907_Brave.jpg — Client and caregiver wearing the Hijab.

We encourage open and respectful dialogues about the cultural and religious importance of the hijab, and we invite our staff to engage in this cultural experience. If any staff member is interested in wearing the hijab for a period of time as a gesture of solidarity or understanding, we warmly encourage them to reach out to their Muslim colleagues. Our Muslim staff members would be delighted to share their experiences and even bring a hijab for those interested to try out. This gesture can be a powerful way to connect, understand and show support.

Eating Disorders Awareness Week: February 1 to 7

Since 2020, Eating Disorders Awareness Week has provided an opportunity to raise awareness about various types of eating disorders which can affect individuals of all demographics. Though Eating Disorders Awareness Week has only been officially recognized since 2020, it has existed since 1986.

It’s interesting to note that eating disorders can be caused both by medical conditions and socioeconomic conditions. According to Statistics Canada, in 2022, 6.9 million Canadians experienced food insecurity, 1.6 million of whom were children. This food insecurity can often lead to the development of eating disorders as well.

There are several types of eating disorders, though one of the most common is anorexia or anorexia nervosa, which is a psychiatric condition in which a patient restricts how much food they eat based on their energy needs. These individuals tend to eat less and exercise more, resulting in these individuals becoming extremely underweight, which can lead to several additional medical complications. This is just one example, though there are many others.

If you or someone you know is struggling with any type of eating disorder, or if you are interested in learning more about learning disorders, please see our additional resources below, or please reach out to your healthcare provider.

Missing Women’s Memorial March: February 14

The Missing Women’s Memorial March occurs on February 14 to honour the lives of missing and murdered Indigenous women and girls across Canada and the USA. The event originated in downtown Vancouver’s eastside following the murder of a local Indigenous woman in 1992. Since then, it has grown to become an annual march to recognize all missing indigenous women and girls around the globe.

Participants in the Women’s March believe that it stands for survival and resilience and symbolizes the reclamation of dignity that has been denied to many women in Canada who identify as part of a marginalized group. Although originating in Vancouver, provinces all over Canada now hold annual marches to honour and bring visibility to these missing women and girls. To find out more information on marches for 2024, be sure to research marches in your community.

International Childhood Cancer Day: February 15

International Childhood Cancer Day is a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families.

The day promotes increased appreciation and deeper understanding of issues and challenges relevant to childhood cancer and impacting on children/adolescents with cancer, the survivors, their families and society as a whole. It also spotlights the need for more equitable and better access to treatment and care for all children with cancer everywhere. As a community that supports children and youth, we stand with the World Health Organization Initiative for Childhood Cancer – striving for 60% survival globally by 2030.

In February, we acknowledge Setsubun, Isra’a and Miraj, Lunar New Year, Vasant Panchami, Nirvana Day and Shab-e Barat. Read more about each holiday/celebration below, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

Setsubun: February 3

Setsubun (節分), meaning “seasonal division,” is a traditional Japanese festival celebrated on February 3, 2024, to welcome the arrival of spring according to the Japanese lunar calendar. The festival includes the ritual of Mamemaki, a tradition of throwing roasted soybeans to drive away evil spirits and invite good fortune. While throwing the soybeans, individuals shout, “Oni wa soto! Fuku wa uchi!” (“Devils out, happiness in”) as a means of purifying your space and minds. Although some customs are no longer popular during Setsubun, few people continue to traditionally ornament their homes with fish heads and holy tree leaves at their entrances to deter evil spirits from entering. This ritual symbolizes purification and is a lively family activity that emphasizes unity and tradition. Setsubun holds cultural and spiritual significance, marking the seasonal transition and creating a sense of harmony with nature.

Isra’a and Miraj: February 8 (depends on moon sighting)

Isra’a and Miraj commemorate the miraculous night journey and ascension of Prophet Muhammad. He travelled from Makkah’s Masjid Al-Haram to Jerusalem’s Masjid Al-Aqsa, then ascended to the heavens. The journey had two phases – terrestrial and celestial. Prophet Muhammad travelled on the Buraq to Jerusalem, a celestial steed that symbolizes the extraordinary nature of the Prophet’s journey. During this ascent, he met various prophets, including Abraham, Moses, and Jesus, and was shown the signs of God. It is said that during this part of the journey, the five daily Islamic prayers were ordained, marking a fundamental practice in Islam.

While he did not see Allah (God in Arabic), the Prophet’s proximity during this journey was unparalleled. The Prophet received the last verses of Surah Al-Baqarah and a promise of forgiveness for his Ummah, barring those associating partners with Allah. The journey included views of Paradise (Jannah) and Hell (Jahannum), revealing the rewards and punishments awaiting in the afterlife. After returning to Mecca, the Prophet’s detailed description of Masjid Al-Aqsa amazed the disbelievers, yet they remained skeptical. This night represents a pivotal moment in Islamic history, embodying deep spiritual significance and lessons in faith, resilience, and devotion.

Lunar New Year: February 10

Lunar New Year, known as the Spring Festival or Chinese New Year, is a significant celebration in China and among Chinese communities globally, spanning a two-week period. Rooted in a tradition over 3,000 years old, it marks the lunisolar calendar’s commencement with family reunions, feasting and symbolic rituals like cleansing homes to remove lingering bad luck. The celebration includes unique customs such as exchanging red envelopes filled with money, particularly for unmarried adults and children. Specific days hold special significance, such as honouring ancestors and acknowledging the creation of human beings. The festivities culminate with the Lantern Festival, a vibrant spectacle featuring paper lanterns, lion dances and parades, symbolizing cultural heritage and expressing hopes for prosperity and happiness in the new year.

Did you know that 2024 is the Year of the Dragon? Every Lunar New Year corresponds with a creature from the Chinese zodiac, which consists of a dozen creatures based on a 12-year cycle. Lunar New Year 2024 is the Year of the Dragon (or Wood Dragon), the fifth sign in the Chinese zodiac calendar. Dragon people are said to be confident, independent, charismatic, ambitious, adventurous and fearless.

Vasant Panchami: February 14

Vasant Panchami is a famous festival that marks the end of the winter season and ushers in the springtime. Sarasvati is the Hindu goddess of the Vasant Panchami festival. Sarasvati is the goddess of wisdom. She embodies the different facets of learning, such as the sciences, arts, crafts and skills. She is often pictured seated on a lotus or a peacock, wearing a white dress. Many honour the Goddess Saraswati by waking up early and dressing in yellow (believed to be her favourite colour), eating and sharing yellow sweets and snacks, and performing rituals (puja) to her deity.

Nirvana Day: February 15

Nirvana Day celebrated annually on February 15, holds significant importance in the Buddhist tradition as it commemorates the death of Buddha and his attainment of Nirvana. Buddhists believe in rebirth, meaning that all people are born again and again. During the Buddha’s life, he became enlightened, which means he understood the true nature of everything. So, when he died, he achieved complete Nirvana, which means he was free from ever being reborn again.

On Nirvana Day, Buddhists go to a temple or monastery and reflect deeply on the teachings of Buddha. People may engage in meditation sessions, participate in rituals, and engage in acts of charity and kindness to honour the Buddha’s teachings and legacy. It is also a time to think about impermanence, which means that we remember that people and things are precious, but they do not last forever, so we should enjoy them while we can.

Shab-e Barat: February 25 (depends on moon sighting)

Celebrated on the 15th of Shaban, Shab-e Barat, or the Night of Forgiveness, is a significant Islamic festival. On this night, Muslims worldwide ask forgiveness for their sins from the all-merciful Allah (God in Arabic). Additionally, the night can be used to seek mercy for the deceased and ill family members. It is believed that Allah decides the fortune and the future of every creature of the earth on this night. Muslims across the world celebrate the night differently depending on cultural diversity and local traditions.