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
SYoung@setonchildrensfoundation.org.
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
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300 Corporate Blvd. South
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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 BHarrington@setonchildrensfoundation.org.
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
MLPagano@setonchildrensfoundation.org.