For the second consecutive year, Texas Children’s Hospital hosted a day of recognition for the families and survivors of Autoimmune Encephalitis (AE). Last year, the event was called a Day of Hope. This year it was called Day of Strength.
Organized by Pediatric Rheumatologist Dr. Eyal Muscal and held on July 27 at the United Way-Greater Houston, the purpose of the event was to provide a space for patients to receive updates about their disease, attend sessions about coping strategies, and take advantage of opportunities to connect with other AE patients and families. This year’s program focused on coping and resiliency and also included special activities to honor siblings of AE patients and, for the first time, breakout sessions for adult AE patients and families.
Various organizations participated in the event, including the Anti-NMDA Receptor Encephalitis Foundation, Inc. Foundation President Nesrin Shaheen was a guest speaker at the event and addressed the importance and the huge strides that have been made by the AE Community of Caregivers and Survivors over the past 10 years in raising the profile of AE and particularly, anti-NMDA receptor encephalitis which still leads the pack in prevalence.
“We salute, Dr. Muscal for his enlightened leadership in recognizing the families affected by this important disease,” Shaheen said.
Muscal applauded everyone who participated in the event and to those who helped organize it, including Sarah Brock, Christina Cowperthwait, Monica Guevara and Chivon McMullen-Jackson.
August 6, 2019
Texas Children’s is very fortunate to partner with many community organizations and companies to help us provide high quality patient and family experiences. Members Choice Credit Union, a full-service financial institution serving the greater Houston area, recently formed a partnership with our West Campus location.
Located directly across the interstate, Members Choice had an urge to work with the hospital to better serve the Katy community. After developing a relationship with West Campus leadership and the Child Life Department, they began hosting small events at the hospital.
“I reached out and made it clear that my team would be so eager to do something here because of how close we are and how passionate our staff is about children struggling with illnesses,” Members Choice Vice President of Strategic Initiative & Programs Joye Jackson said. “We constantly look for ways to help and volunteer in the community and Texas Children’s was one of the best choices that we could start with.”
Earlier this year, Jackson and her team inquired about how they could be more involved with the hospital and later agreed to sponsor West Campus’ Summer Family Fun Days series of events. Their financial and volunteer services allowed the campus to successfully produce three days in June and July, of fun activities for inpatients, outpatients and their families.
On June 19, the events began with games and face painting in the lobby, then a magic comedy show was held in the conference rooms. The second event on July 10, Members Choice team member provided stations for patients and their families to create slime just before Mad Science Houston presented a science demonstration with a hands on experiment. The final day of the series was held on July 31, as Tom’s Fun Band entertained children of all ages with an interactive music show and family board games.
“The primary goal of this summer series is to provide summer destination activities for our patients and families while strengthening community relations,” Child Life Activity Coordinator Mary Reddick said. “We are so thankful to Members Choice for their dedication to our patients and their families.”
“It has really been phenomenal. We love coming here, every time we come, it’s more than what we expected. Sometimes we wonder how many children we’re going to have, but once we’re here, they just come out from everywhere,” Community Relations Representative Vanessa Wheeless said. “It just does so much for us to put a smile on a child’s face and kind of take their mind off what is going on with them.”
Members Choice’s mission is people-helping-people by providing sound financial solutions and resources, as well as sharing their passion for supporting the community. Their goal this year as an organization was to be more active in the community and to offer more opportunities.
“It’s one thing to say you want to do for the community, but it’s another thing to actually do it and see the reactions,” Jackson said. “We want to be known as an organization that truly does give back. For Texas Children’s to open the doors and welcome and allow us to be hands on with our support, we really thank you for the opportunity. We’re grateful that Members Choice is able to provide this assistance, and we want to challenge other businesses and organizations to do the same.”
Trang Vu highlights her invaluable experience at Texas Children’s Professional Day and shares why her nursing colleagues should consider attending next month’s conference. Read more
Shortly after Amber Keckley’s daughter was born, the new mom showed up at Texas Children’s Breastfeeding Friends (BFF) Group to learn more about breastfeeding and to meet other women like herself. For the next several weeks, Keckly learned more than she ever expected about breastfeeding and other issues related to parenting a newborn. She also gained a group of life-long friends.
“After having my first child, I felt very isolated,” Keckly said. “The BFF Group forced me to get dressed, get out of the house and share my feelings with others.”
Keckly liked the group so much, she stayed in touch with some of the moms she met in the group, getting together with them weekly for the first year of her child’s life. She also decided to rejoin the group after her second child was born.
“Mothers can share their experiences openly at the BFF Group, providing them with an additional outlet and a growing, functional compass to help each participant meet their personal goal with breastfeeding,” said Lactation Consultant and BFF Group Leader Brenda Hayden. “Each is invested and confidence just blossoms.”
The BFF Group meets from 10:30 a.m. to 12:30 p.m. every Friday in the patient education room on the fourth floor of the Pavilion for Women. Anywhere from 15 to 30 women attend with their newborns. Facilitated by Hayden, a certified lactation consultant, the curriculum consists of an ongoing six-week series of topics:
The early weeks of breastfeeding
Overcoming breastfeeding challenges
Nutrition for the breastfeeding mother
Breastfeeding away from home
Pumping, bottles, and breastfeeding
“Every week the mix of assembled attendees differs, so even if a mother is repeating a weekly topic, she will have exposure to new insights, tips and information,” Hayden said. “From the moment of introduction, to topics, discussion and open forum, it is our goal that each mother feels heard, validated and supported.”
The BFF Group was created in 2015 as a way to provide additional breastfeeding support to new mothers. Since then, more than 750 women from across the globe have attended. Mothers come from areas far and wide and through other neighboring hospital systems, such as Methodist Hospital, Memorial Hermann Hospital, HCA Houston Healthcare, the Lactation Foundation and the WIC Nutrition Program.
Participants often are accompanied by their mothers, grandmothers, sisters or girlfriends. These additional visitors may participate in the group as well and bring deep generational and regional perspectives, which provide additional support and resources to both new and experienced mothers.
“This program goes along with our overall philosophy at Texas Children’s Pavilion for Women, which is to treat women, mothers and babies with a full continuum of high-quality, expert health care and to do so in a family-centered environment,” said Director of Women’s Support Services Nancy Hurst. “Providing additional breastfeeding support was a natural, intuitive step forward in providing the best in ongoing care for families.”
How do moms learn about the BFF Group?
This is where you continue to have a steady impact! In keeping with the BFF Group’s practice of layering supports, mothers are introduced to multiple resources early on in prenatal classes, during her inpatient stay, during her discharge teaching, and throughout the postpartum period by many OB/CNM and pediatric providers. Many referrals come through word of mouth or by previous BFF Group alumni. In addition, moms such as Keckley return to the group with their second children.
“I tell everyone I can about this group,” Keckley said. “It helped me more than I could have imagined.”
In honor of World Breastfeeding Week August 1-7, Texas Children’s Hospital and the BFF Group are hosting its first Latch-On event where breastfeeding and pumping moms can come enjoy breastfeeding advice, pumping tips, refreshments, a photo booth and prize drawing. The event will be held from 10:30 a.m. to 1 p.m. Friday, August 2 in the patient education room on the fourth floor of the Pavilion for Women. The BFF Group discussion will follow the event. A similar event was held at Texas Children’s Hospital The Woodlands on August 1. Texas Children’s Hospital West Campus will host a breastfeeding awareness event from 11 a.m. to 1 p.m. Friday, August 9.
The BFF Group and other breastfeeding services offered to patients, also are offered to lactating employees. Click here for a comprehensive list of available services.
August 2, 2019
Anette Sandoval shares a memorable moment she had with her patient who taught her that despite the daily challenges in life, beautiful things often follow life’s toughest storms. Read more
July 29, 2019
Since opening its doors in 2017, Texas Children’s Trauma and Grief Center has launched two high-profile programs to provide ongoing support and healing to families impacted by Hurricane Harvey and the Santa Fe school tragedy. The Trauma and Grief Center is one of the only health service agencies within this region of Texas to offer effective child trauma and bereavement expertise. Read more
July 23, 2019
On January 18, Project Pinball Charity donated a limited edition pinball machine to Texas Children’s Hospital The Woodlands to help entertain and ease the minds of patients and their families.
Project Pinball is a non-profit charity organization that places pinball machines in children’s hospitals and Ronald McDonald Houses to introduce therapeutic benefits to kids in a unique, fun, and engaging way.
“It is a distraction for children who want to get their mind off of being in the hospital, but also an opportunity to do something that gets you on your feet instead of staying on the bed or chair playing video games and watching television,” Manager of Emergency Management, Aaron Freedkin said. “Beyond that, therapeutically this machine can help with standing balance, hand-eye coordination, and building relationships between the patient and Child Life Specialists when they interact with each other on two-player games.”
The initial impulse behind this gift derived from Freedkin’s passion for both the Texas Children’s mission and playing pinball. After learning about Project Pinball Charity, he initiated contact and was ecstatic to find out that they would be able to donate a machine to Texas Children’s Hospital. From there, he managed the project with the charity. With additional help from a local arcade business, The Game Preserve, the community helped raise enough money for Texas Children’s Hospital The Woodlands to be the first hospital in Houston to receive this generous gift.
After about a 10-minute assembly process, representatives from Project Pinball Charity and The Game Preserve officially dedicated the new addition to the third floor Child Life Teen Room.
When asked why this donation was important to be a part of, Rusty Key, co-owner of The Game Preserve, pointed to the patients walking into the room to see the new game and said emotionally, “That is the reason. Just seeing their faces light up is why I work so hard to give back to the community.”
As a frequent pinball player in his spare time, 16-year-old patient Bobby Reeder made his way to be the first person to try the new pinball machine out.
“Before coming here, I didn’t know that the hospital even had one of these rooms, Reeder said. “I was so excited when I found out there was going to be a pinball machine.”
Project Pinball will maintain ownership of the machine when it comes to maintenance and will also train employees on simple repairs if necessary. Their dedication to providing patients with new therapeutic benefits and overall entertainment in the hospital is expected to expand to Texas Children’s West Campus and other hospitals in Houston.
The organization’s Senior Founder and Director, Daniel Spolar, expressed that his joy and passion towards donating to children’s’ hospitals is due to his own personal experience when his son was hospitalized.
“I know first-hand how it can be for children in these situations while my son was going through treatments. I want to do whatever I can to help ease their minds in the hospital while enjoying something that I can relate to,” Spolar said. “We are a grassroots company out of Florida whose purpose is to give back to the community, and we are excited to be able to expand to Texas Children’s Hospital.”
Texas Children’s Hospital has created Child Life activity spaces at each hospital to provide a fun, safe and procedure-free environment for our inpatient population and their families. The majority of the toys and gaming systems available for patients are generously donated from many community organizations. The latest donation serves as a new way for patients to have enjoyable activities during their stay.
“We are excited to have this new addition to our teen room! It is important for us to help patients cope and decrease any anxiety they may have, Child Life Specialist Amy Malespin said. “This pinball machine is yet another unique method of distraction for both patients and their families.”