BULLETIN - Elizabeth Seton Pediatric Center
Transcription
BULLETIN - Elizabeth Seton Pediatric Center
BAYLEY’S BULLETIN The News Magazine of the St. Elizabeth Seton Children’s Foundation The News Magazine of the St. Elizabeth Seton Children’s Foundation A Party Fit for a Princess Spotlight on Therapeutic Recreation Princess to princess: Giovanna shares a special moment with Belle. While every princess has a different story, you can almost count on one, common point in the plot: there will be a ball. For Giovanna Jaquez, a Children’s Rehabilitation Center patient who was granted her wish to become a “princess for a day,” her “ball” was nothing short of a dream come true for her and her family! Giovanna was born with congenital cytomegalovirus (CMV) and she also has spastic quadriplegia, a form of Cerebral Palsy. Her respiratory and pulmonary systems are severely compromised, as well. Since her birth, Giovanna has received treatment at the Children’s Rehabilitation Center, including physical, speech and aquatic therapies. She has also received physiatry and neurology services and attended Take a Peek PAGE 2 Evelyn the Children’s Rehabilitation Center’s brace/orthotic and adaptive equipment clinics. Giovanna and her mother, Sophia, have become very close to the Children’s Rehabilitation Center staff, who have seen her at least one or two days a week for the last 14 years. “I just love everyone at the Children’s Rehabilitation Center so much,” said Sophia. “From the doctors, to the nurses, to the therapists and everyone in between, Giovanna and I have been so blessed to know them all. They brought my daughter to life and they helped me learn how to be her mom,” she said. “Putting faith in the staff here and allowing us to help her child not only helped Giovanna, but also helped CONTINUED ON PAGE 2 PAGE 3 Feast Day Tradition Continues SPRING 2015 “We change lives through play.” That’s how Frankie Diaz, Certified Therapeutic Recreation Specialist, describes what he and his coworkers do every day at the Elizabeth Seton Pediatric Center. Frankie is part of the Pediatric Center’s Therapeutic Recreation team, which also includes Alyana Pomerantz, Caitlin Freidl, Shaneice Praylow, Vanessa Nunez and Lauren Manning, the department’s Clinical Lead. All 137 of the Pediatric Center’s residents take part in therapeutic recreation and a Certified Therapeutic Recreation Specialist (CTRS) is assigned to each of the six neighborhoods in the facility. But what exactly is therapeutic recreation? “In a pediatric long-term care facility like ours, therapeutic recreation is a discipline that gives medically complex children the chance to grow, learn and enjoy themselves through structured activities in a barrier-free environment,” said Carmela Senese, Chief Rehabilitation Officer, who directs the Therapeutic Recreation department at the Pediatric Center. BACK COVER Capital Campaign CONTINUED ON PAGE 5 Letter from Pat Tursi Dear Friends, Welcome to the first ever Bayley’s Bulletin! Bayley’s Bulletin is our new, quarterly news magazine designed to keep our supporters and friends up-to-date with what’s going on within the St. Elizabeth Seton Children’s Foundation’s Continuum of Care. Now, you may be asking yourself: Who is Bayley? And why is she a ladybug? Bayley the Ladybug is the logo of the St. Elizabeth Seton Children’s Foundation and she is named after the maiden name of our namesake, St. Elizabeth Seton. Most people think of a ladybug as a delicate creature that can transform at any moment and take flight. For that reason, we at the Foundation believe that Bayley is also a symbol of hope. As you may already know, our Continuum of Care has a long history of living compassionately and serving the underserved. We have spent the last 26 years responding to the unmet needs of New York’s most medically complex children in the loving spirit of Mother Seton. In Pat Tursi celebrating Elizabeth Seton Pediatric Center resident Stephanie’s 17th birthday. fact, we now care for more than 5,000 children across our Continuum of Care each year. We continue to expand, innovate and set the standard for caring for medically complex children. And we do it with tenderness, unwavering devotion and – yes – hope. You’ll notice Bayley at the bottom of each page in our newsletter. That’s because hope is present in each story and on every page of Bayley’s Bulletin. You can feel it in a mother’s faith in “A Party Fit for a Princess,” and you can see it in the faces of our caregivers in “Celebrating Our Staff.” Hope abounds as we embark upon “The Hummingbird Campaign,” our $6 million philanthropic effort to bring 32 ventilator-dependent children, many of whom are currently residing in facilities out-of-state and far from their families, back home to New York. I do hope that these stories will inspire you to help us on our journey to transform the lives of many more medically complex children in our community. Sincerely, Pat Tursi BAYLEY’S BULLETIN Bayley’s Bulletin gives the St. Elizabeth Seton Children’s Foundation the opportunity to communicate news and events from across the organizations that comprise our Continuum of Care – the Elizabeth Seton Pediatric Center, the John A. Coleman School and the Children’s Rehabilitation Center. If you know someone who would like to be on our mailing list, or if you have ideas for future issues, please let us know. Contact Sarra Young at (914) 226-3004 or e-mail her at [email protected]. EDITOR Sarra Young, St. Elizabeth Seton Children’s Foundation ASSISTANT EDITOR Karen Moya, Elizabeth Seton Pediatric Center CONTRIBUTING PHOTOGRAPHERS Sarra Young, St. Elizabeth Seton Children’s Foundation Chris Marksbury, CM Photos Joe Golden Articles without attribution are written by the editor. © 2015 St. Elizabeth Seton Children’s Foundation Articles or material may be reproduced with permission only. The organizations within our Continuum of Care are sponsored by the Sisters of Charity of New York. Vice President of the St. Elizabeth Seton Children’s Foundation CEO of the Elizabeth Seton Pediatric Center and the Children’s Rehabilitation Center President of the John A. Coleman School where good beginnings never end PAGE 1 A Party Fit for a Princess CONTINUED FROM PAGE 1 Sophia deal with the emotional ups and downs of having a child with special needs,” said Gina Farrell, Speech Therapy Manager at the Children’s Rehabilitation Center. “We became her extended family; the family she could rely on no matter what. Whether there were tears, Giovanna’s mom, Sophia, and Make-AWish wish granter, JohnDavid, crown Giovanna before her grand entrance into her party. laughter or complaining, everyone was here to listen and help both of them through those times,” Gina said. Sophia completely agreed. “They really are my family,” she said, “and they showed me that I wasn’t alone in this. No matter how isolated and scared I felt, once I was within the walls of the clinic I felt like I could breathe again,” she said. According to Dorian Tomace, Giovanna’s wish granter from Make-A-Wish Hudson Valley, this sense of understanding and this closeness is exactly why Sophia chose to share Giovanna’s Make-A-Wish experience with the entire Children’s Rehabilitation Center community. “When evaluating a space [for Giovanna’s wish], Sophia immediately thought of the clinic,” Dorian said. “It was important for Giovanna to be in a place of comfort, where her joy could also be shared with other children and families who go to the Children’s Rehabilitation Center,” she said. On March 6, 2015, wish granters and volunteers from Make-A-Wish Hudson Valley transformed the Children’s Rehabilitation Center’s Speech Therapy Gym into a “Princess Ballroom.” Giovanna and Sophia arrived at the party by limousine, just like true royalty, where they were greeted by their family members and friends from the clinic. Princesses Belle, Anna and Elsa also came to Giovanna’s party, along with Sven and Olaf, courtesy of Dave’s Cast of Characters in New Rochelle. Just like in the fairytales, guests spent the entire afternoon dancing, singing and playing games, and they even sipped tea and indulged in luxurious sweets and finger sandwiches from Kathleen’s Tea Room in Peekskill. “We as wish granters know how important it is for a family to have a very special memory with their child, who has typically gone through a lot,” said Dorian. “It was important to have Giovanna feel like the princess she is and to have a wish focus in on making her happy. To bring strength, hope and joy to our families is really what it’s all about for us,” she said. “I thank God that Giovanna was given this day,” Sophia said. “I’ve always wanted to be able to provide her with a beautiful day like this; I wanted to throw her a big party with music and fun and all the people who love her together in one room,” she said. “You all did that for her. And it made it the most awesome day ever.” To see more pictures from Giovanna’s special day, please visit facebook.com/ childrensrehabcenter. E-mails of Evelyn For parents who have a child residing at the Elizabeth Seton Pediatric Center, it can be extremely difficult to come to terms with the fact that their son or daughter cannot be with them, in their family home, at the end of each day. Julie Luctamar has struggled with this separation since her almost 2-year-old daughter, Evelyn, was admitted as a Pediatric Center resident back in September. According to Mariel Maffetone, a Child Life Specialist at the Elizabeth Seton Pediatric Center, Julie resolved to do whatever was in her power to continue to spend as much time as possible with her baby girl, despite their distance. “Julie is an incredible mother and she’s been actively involved in most every aspect of Evelyn’s care,” Mariel said. “She would visit each week, attend her daughter’s clinic appointments, take part in care training and even stay with Evelyn at her bedside overnight.” But, this past winter, when Julie’s pregnancy with Evelyn’s sister was nearing term, her physician advised her to limit her travel. Julie was devastated. “Julie would tell me that it was so difficult for her not to see Evelyn as much as she used to,” Mariel said. “In this critical time in Evelyn’s development, I knew how important it was to find a way for Evelyn and her mom to stay connected.” Mariel decided to e-mail Julie pictures of Evelyn each week so that Julie could CONTINUED ON PAGE 6 PAGE 2 A Heart-Shaped Box for Valentine’s Day On February 12th, parents of students from the Yonkers campus of the John A. Coleman School and residents of the Elizabeth Seton Pediatric Center joined their children in the Coleman School gymnasium for a Valentine’s Daythemed Family Support Group event. In the spirit of the holiday, families decorated heart-shaped boxes with their children and listened to love songs such as Nat King Cole’s “Unforgettable” and “I Love You for Sentimental Reasons.” Some family members Melissa and her father had so much fun! They decorated serenaded their children not just one or two, but five heart-shaped boxes together! as they crafted, while others swapped stories and reflected on meaningful moments they’ve shared with their sons or daughters. The Family Support Group is a way for our entire Yonkers campus to come together as a community and support each other by taking part in fun activities. If you are a parent of a student at the Yonkers campus of the John A. Coleman School or a parent of a resident of the Elizabeth Seton Pediatric Center who would like more information on this group, please contact Dr. Joann Galley, Director of School Psychological Services. Feast Day During the first week of January 2015, tributes into our mission and the way St. Elizabeth Seton Children’s Foundaour entire Continuum of Care celebrated we care for our children, just as Mother tion Community who, in the spirit of the Feast Day of our namesake, St. Seton did, and that is something that Mother Seton, have dedicated themElizabeth Ann Seton, continuing a tradireally resonates with our staff and our selves to the care of children in need. tion that began across our organizations community as a whole.” “The greatest gift for me,” said Sr. three years ago. Both events began with a spiritual reMaria, “was to see staff members celThis year, Feast Day started at the flection, followed by a “feast” of desserts ebrating with each other, alongside our Elizabeth Seton Pediatric Center and and an array of musical performances administrators, families, Sisters and, the John A. Coleman School’s Yonkers and special presentations. During the of course, our children. It was a really campus on January 6th, where we were course of the celebration we honored beautiful way to honor St. Elizabeth so happy to be joined by our sponsors, over 100 employees and families in the Seton’s legacy.” the Sisters of Charity of New York, as well as Bishop Gerald Walsh and Father Arthur Mastrolia. We then continued our celebration on January 8th at the John A. Coleman School’s White Plains campus and the Children’s Rehabilitation Center. “I was very pleased and grateful for the outpouring of support and joy I saw surrounding this year’s Feast Day,” said Sr. Maria Iglesias, S.C., Pastoral Care Coordinator at the Elizabeth Seton Pediatric Center. “At the heart of this year’s celebration were three, integral virtues that St. Elizabeth Seton brought to all those she helped: tenderness, A group of our sponsors, the Sisters of Charity of New York, with CEO Pat Tursi and Pediatric Center cheerfulness and excellence. resident Stephanie, during our Feast Day celebration in Yonkers. We incorporate these atPAGE 3 Celebrating Our Staff At the St. Elizabeth Seton Children’s Foundation, we always look forward to acknowledging our staff for their love and commitment to our children. This past February and March gave us many worthy occasions to celebrate employees across our Continuum of Care... Take a look! March is … Social Work Month Yonkers Campus White Plains Campus Social workers at the Elizabeth Seton Pediatric Center with some of our family members (clockwise from left to right): Selena Perez with Kenid Salamanca, Cecile Kehr with Gloria Sanchez, Michelle Cummings with Felix Charles, Raquel Fedebagha with Vincent Gonzalez and Xochil Bedolla and Joanne Joseph with Solange Velme. March is … Nancy Bave, the social worker at the Children’s Rehabilitation Center (center) with Karen Tapia (left) and Nicole Celentano, social workers at the John A. Coleman School. Creative Arts Therapies Week (March 15-21, 2015) Child Life Month Elizabeth Seton Pediatric Center Child Life Specialists Mariel Maffetone (top) with Pediatric Center resident, Davin, and Vanessa Andrews with Pediatric Center resident, Hamid. The Creative Arts Therapies team at the Elizabeth Seton Pediatric Center (from left to right): Michael Viega, Kristen O’Grady, Marissa Emple, James Maxson, Deborah D’Angelo and Caroline Mason. PAGE 4 Spotlight on Therapeutic Recreation CONTINUED FROM PAGE 1 Therapeutic recreation specialists use musical story time sessions and much, These opportunities to interact and activities like arts and crafts, cooking, much more. play are critical, according to Lauren. pet therapy, music, outdoor play, spe“One of the children I treat on my “They’re what give our population of cial events and community outings to neighborhood has muscular spasticity,” children quality of life,” she said. “For provide emotional support for residents. said Alyana. “Once a month we have a us, it’s about creating moments where These activities, in turn, help to improve ‘spa day’ and I give her a manicure. I can our kids can just be kids, not kids with residents’ self-esteem, decrease feelings see her just totally loosen up. Her body medical complexities.” of anxiety and stress, increase cognitone becomes relaxed, her breathing is To learn more about the therapeutic tive awareness, improve social skills and calm and she’s just happy. She gets to recreation program at the Elizabeth foster positive, emotional connections. be a total girly-girl!” Alyana laughed. Seton Pediatric Center, you can Activities, celebrations and visit setonpediatric.org/therapeutictrips are planned by therarecreation. peutic recreation specialists Therapeutic Recreation Month for children every day, seven days a week. “For the children we care for, this is their home,” said Frankie. “So, planning these activities and doing what we can to make birthdays, holidays or any experience special is all very important,” he said. Caitlin echoed Frankie’s sentiments. “We strive to give our residents the same opportunities that a ‘typical’ child would have,” she said. To support this effort, the Pediatric Center’s Therapeutic Recreation department plans nightThe Elizabeth Seton Pediatric Center’s Therapeutic Recreation department (from left to right): Frankie Diaz, time camping trips, baking Lauren Manning, Shaneice Praylow, Caitlin Freidl, Alyana Pomerantz and Vanessa Nunez. groups, gardening activities, February is … Meet Lauren Manning, Therapeutic Recreation Clinical Lead Lauren Manning first joined the Elizabeth Seton Pediatric Center’s Therapeutic Recreation team back in July of 2011 In March 2014, she was promoted to the department’s Clinical Lead position, a role that Carmela Senese, the Pediatric Center’s Chief Rehabilitation Officer, describes PAGE 5 as a perfect fit. “Over the years, Lauren has provided wonderful therapeutic recreation activities for our children and truly understands the importance of this discipline for our specific pediatric population,” said Carmela. “As Clinical Lead, she has continued to raise the standard of practice for our Therapeutic Recreation staff and I am just thrilled with the outcomes I’ve seen under her leadership.” Lauren has worked as a Certified Therapeutic Recreation Specialist since 2002. During the course of her professional career, she has had the opportunity to work with both children and adults who have severe physical and developmental challenges, medical complexities and psychiatric needs. Lauren holds a bachelor’s degree in Recreation Management – Therapeutic Recreation from Lock Haven University. E-mails of Evelyn CONTINUED FROM PAGE 2 keep up with what was going on with her daughter. “At Evelyn’s age, there can be such rapid periods of growth and transformation,” Mariel noted. “Being able to share snapshots of Evelyn’s physical changes, her evolving interests and parts of her daily routine was extremely meaningful for Julie and I think it helped promote child-mother bonding,” she said. Kristen O’Grady, Clinical Director of Creative Arts Therapies and Child Life at the Elizabeth Seton Pediatric Center, explained that Child Life Specialists are specially trained to assist families like Evelyn’s. “At the Pediatric Center, Child Life Specialists work tirelessly to promote developmental health through family-centered care. By normalizing the hospital environment through the use of technology and other creative supports, Mariel was able to facilitate communication and promote the continuation of healthy bonds between Evelyn and Julie, thereby reducing stress and creating an environment conducive to healing,” she said. Mariel felt extremely gratified by the feedback she received from Julie. “She told me that she would check her email every day looking for pictures from me,” Mariel said. “She loved seeing her daughter’s progress,” she added. “It is our great privilege to provide care for Evelyn and all of the children at the Pediatric Center,” said Kristen. “By joining with parents in this care, we are able to uphold the values unique to each family and provide care consistent with those values. We are merely the scaffolding which supports the core structure – the family.” Julie with Evelyn and her twin brother, Issiah, at the Pediatric Center’s annual Family Holiday Party this past December. Coleman School Pilots a New Feeding Program The John A. Coleman School in White Plains has launched a variety of new programs and initiatives over the last several years to meet the changing educational, medical and therapeutic needs of its students and their families. The latest addition to the Coleman School curriculum is a pilot feeding program that is a speech therapy initiative using the Sequential Oral Sensory (SOS) Approach to Feeding. The Coleman School refers to this pilot feeding program as a modified SOS Program. The modified SOS Program uses evidence-based practices to decrease sensory aversions to eating and tactile defensiveness to food. Carol Foy, the Coleman School’s Speech Pathologist Team Leader, has received advanced training and certification in the SOS Approach to Feeding. “This program is for the problem feeder, not the picky eater,” she explained. “The children who need this program often have multiple, complex medical needs and sensory issues. They may have oral motor delays or they may not find eating to be a positive experience,” Carol said. “The goal is to systematically desensitize the mealtime process so that these children can have a ‘typical’ and pleasant experience with food.” Cara Kennedy, a speech language pathologist at the Coleman School, leads the school’s SOS Program along with Carol. Sharlene Nichols, a speech language pathologist, and AlCara Kennedy during a session with Ethan, a John A. lyson Cusumano, a theraColeman School student. peutic feeding coordinator, lend additional support to the SOS team. Cara has also received advanced training and certification in the SOS Approach to Feeding. “Not only does this program positively impact a child during the school day, because they need food to focus and thrive in a classroom setting, but it also has an immense impact on the child in their home,” Cara said. According to Cara, the program increases the tolerance for new foods, helps to build a greater food repertoire and also fosters positive mealtime behaviors. These outcomes can greatly reduce stress for families at mealtime. “It’s exciting and gratifying when we hear feedback from parents that their child has trialed a new food or engaged in messy play with foods they couldn’t stand before this program,” Cara said. “We hope to help make mealtime a pleasurable, sensory experience that families can share together with their child.” If you are a parent of a student at the John A. Coleman School’s campus in White Plains and you would like more information about our modified SOS Program, please contact Tina Pipala, Director of Related Services. PAGE 6 NON PROFIT ORGANIZATION US POSTAGE PAID WHITE PLAINS, NY PERMIT NO 1837 300 Corporate Blvd. South Yonkers, N.Y. 10701 Visit us online at: www.setonpediatric.org The Hummingbird Campaign Could you imagine your family having a child who has multiple, complex medical diagnoses and disabilities? A child who cannot breathe independently and requires the assistance of a ventilator? A child who, along with these conditions, has to reside hours away from you, possibly in a different state, to receive the medical care necessary to live? This is an unfortunate reality for many parents living in New York State who have a ventilator-dependent child. The Elizabeth Seton Pediatric Center is seeking to remedy this unbearable heartache for so many families through a Capital Campaign project called the Hummingbird Campaign. The Hummingbird Campaign, a $6 million philanthropic effort initiated by the St. Elizabeth Seton Children’s Foundation, aims to bring 32 ventilator-dependent children, many of whom are currently residing in facilities out-of-state and far from their families, back home to New York where they will be in the hands of experts in the field who can provide them with the highest quality of care and closer to their loved ones living in New York. This new, three-story addition will make the Pediatric Center the largest provider of pediatric ventilator care in New York State. We will break ground on our $24 million expansion by early fall 2015 and will be move-in ready by December 2016. If you’d like to learn more about the Hummingbird Campaign, please visit setonpediatric.org/news-events/the-hummingbird-campaign. If you are considering making a gift to support this worthy effort, please contact Brian Harrington, Senior Vice President of Institutional Advancement, at (914) 294-6114 or e-mail [email protected]. SAVE THE DATE Block Party Saturday, June 6, 2015 Elizabeth Seton Pediatric Center Yonkers, N.Y. Fall Festival Sunday, October 4, 2015 John A. Coleman School Children’s Rehabilitation Center White Plains, N.Y. For additional information on these events, please contact MaryLou Pagano, Vice President of Institutional Advancement, at (914) 597-4021 or e-mail her at [email protected].
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