During the school year, Sarah, a first grader, attends school with other TCU children. Her teacher, Ruth Sangiuliano, MEd, is teaching Sarah how to use a single-switch device to speak for her. When Sarah wants to say hello, she hits a switch with a picture of a hand waving to hear the pre-recorded words “hello.” Other words and phrases can be programmed into the device based on the picture on the card.
Sarah spends weekday mornings in school, learning about communication, language arts and literature. She loves the “ABC” song and just finished reading “The Little Old Lady who isn’t Afraid of Anything.” She sees a music therapist twice a week. Sarah’s days also include occupational, speech, physical and recreation therapy, and Fridays mean trips with the Education and Recreation Therapy departments.
Janice loves the outings and tries to attend whenever possible. Sarah’s been to the State Fair, horseback riding, the Rappahannock River and Virginia Beach. Janice keeps a disposable camera in Sarah’s room so her caregivers can document Sarah’s adventures when Janice isn’t there.
Vernita Easley, CTRS, Certified Therapeutic Recreation Specialist, said outings are designed to “integrate children into the community” and promote interaction in various activities with others outside their living environment. In addition, community outings provide children opportunities to respond to different stimuli that promote a response from tactile or auditory stimulation. Vernita said Sarah responds well to outings with lots of sensory stimulation, whether it’s putting her toes in the sand during her first visit to the beach or swimming in the Rappahannock River.
Vernita and Ruth are two members of Sarah’s medical team. Team members are in constant contact with one another to ensure that individual therapy goals are incorporated into other therapies and activities. Even though Sarah is on the TCU, Janice is an integral part of the team, attending monthly team meetings and assuming Sarah’s care during her daily visits to the hospital.
“We make a real effort to accommodate parents,” said Pat Anderson, RN, BSN, CRRN, Director of Nursing for the TCU and Inpatient Clinical Coordinator. “Our parents are the experts and help us to deliver the best care. We want to help them feel connected and a very important part of their children’s lives.”
TCU families also stay involved through weekly support suppers, TCU Family Days and “The Transition Edition” newsletter, which is sent to TCU families six times a year and includes articles about the hospital and TCU, new staff, upcoming activities and photos from special events. Held four to five times a year, the Saturday TCU Family Days provide opportunities for families to socialize and enjoy activities like movies and ice cream, cookouts or holiday meals.
Ruth keeps Janice involved by calling or sending a letter about Sarah’s progress at least weekly. In addition to teaching Sarah how to use a computer, Ruth, with the help of Sarah’s physical and occupational therapists, is teaching Sarah how to sit up without support, tolerate food by mouth and reach for toys.
Before Sarah came to the TCU, she received early intervention services through Henrico County and saw multiple physicians for her complex medical needs.
The coordinated care is one of the biggest advantages of the TCU, said Eugenio Monasterio, MD, FAAPMR, Director of Outpatient Rehabilitation. “Since [Sarah’s] been here, we know exactly what she’s doing. For her family, that means less running around.”
Janice can’t say enough about her pleasure with the TCU. “When you have families willing to move to Virginia to get into this Children’s Hospital of Richmond, you know you have a good place.”
Sarah clearly agrees. Her smile and good nature have won over her doctors and therapists.
“Sarah is such a happy child,” said Dr. Monasterio. “You can’t help but crack up when you see her.”
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