Tender Loving Care

ALL CHILDREN’S HOSPITAL TENDER LOVING CARE DECEMBER 2012 ALL CHILDREN’S HOSPITAL COVER: Before she was even born, Marina’s parents were told that she would probably not survive due to a rare condition called a giant omphalocele. Thanks to the help of a remarkable team of All Children’s doctors and staff, and her valiant parents—Marina has not only survived, but thrives. See Marina’s story on page 10. All Children’s Hospital Founda- tion qualifies under Section 501(c)(3) of the IRS Code. Our federal tax identification number is 59-2481738. Our Florida Solicitation of Contributions Act Registration Number is SC-01106. A copy of the official registration and financial information may be obtained from the Division of Consumer Services by calling toll free 1-800-435-7352, within the state. Registration does not imply endorsement, approval, or recommendation by the state. We retain no professional solici- tors and our Foundation receives 100% of each contribution. 1 Contents DECEMBER 2012 2 All In For Autism All Children’s Autism Center offers exactly what families of kids like Kamryn need. Answers and help are now found under one roof—in our new Child Development and Rehabilitation Center. 8 A New Class on Campus July 2014 will mark the arrival of resident physicians training in a new program under the auspices of ACH and Johns Hopkins Medicine. 10 Marina’s Story: It Takes a Team When five-year old Marina started kindergarten this fall, a team of caregivers had reason to celebrate along with her family. 15 The 2012 Foundation Society 29 Johns Hopkins First Shining Star Works Here A new nursing excellence honor goes to All Children’s Pediatric Emergency Center Clinical Leader Sherry Belcher, RN. 30 Radiothon Marks Five Fabulous Years The US 103.5 Cares for Kids Radiothon takes to the air December 6-7— celebrating our fifth year of raising funds and friends for All Children’s. 32 Hospital Home for the Holidays Families of youngsters spending December 25th in the hospital have help honoring their holiday traditions, thanks to our Child Life Department. 34 New Faces All Children’s appoints first Research Director, Dr. Neil Goldenberg, and first Dick Vitale Fellow, Dr. Calvin Lee—with signs of promising developments ahead in pediatric research. TENDER LOVING CARE Editor: Ann Miller is published two times yearly by the Marketing & Public Relations Department for the staff and friends Contributing Writers: Ann Miller of All Children's Hospital. All rights reserved. Ellen Arky, Dave Scheiber Please address all correspondence to: Photos: Mike Sexton All Children's Hospital Foundation Gabriel Tinnaro, Andy Merhaut P.O. Box 3142, St. Petersburg, Florida 33731 2 ALL CHILDREN’S HOSPITAL All In For Autism New Autism Center Provides Answers & Help Under One Roof Six-year old Kamryn e had a handful of Kamryn needed speech therapy and words,” mom Katie re- a whole lot more. Nutrition guidance offers his best “pleased calls, “but none of them for a special diet. Occupational ther- to meet you” smile were expressive. They apy for his sensory issues to keep the “H shoes on. Applied Behavior Analysis and immediately gets were labels—just naming things. down to the concern Expression is what we really needed. to deal with the fleeing and biting. ‘I feel—I want—I’m angry.’ Those “Nothing was ever available all in foremost in his mind. were the things we needed to know, one place,” says Katie. “I don’t know not just the screeches and the yelling how we made it happen. As a parent, “What are you going to and the tantrums.” it’s hard to balance all those different be for Halloween?” he Back then, Kamryn had just been therapies and different places, you asks, even though it’s diagnosed with autism through the know?” still August. “I think Early Steps Program at All Children’s All Children’s now has the you should be a bat!” he Hospital. In addition to his language answers and needed services all deficits, he had digestive issues. He under one roof. suggests before heading had quirky behaviors, like lining up off with All Children’s objects or spinning them (or him- From Dream to Reality self). He hated wearing shoes. He’d speech therapist Jennifer All Children’s Autism Center opened regularly flee from his caregivers— Ziemak, SLP for their in March and already has added especially if there was open water another weekly evaluation day to regularly scheduled nearby. He’d even been known to bite accommodate new patients. It’s appointment. other children at his day care. housed in the recently renamed and renovated Child Development and When Kamryn first Rehabilitation Center (formerly the started seeing “Miss He hated wearing Physicians Office Building) at the shoes. He’d corner of 6th Street and 9th Avenue Jenn” in 2009, he was South. While the Autism Center’s of- virtually non-verbal. regularly flee from fices take up part of the fourth floor, the CDRC is full of services and his caregivers— providers critical to the development especially if there of children with autism spectrum disorders (see page 7). was open water “Children with autism need so nearby. He’d even much,” explains Center Director Flora Howie, MD. “Here at All been known to bite Children’s, we are resource rich. So it’s a matter of organizing and coor- other children at dinating services for these families. his day care. Continued— 3 Kamryn 4 ALL CHILDREN’S HOSPITAL All In For Autism, continued This has been my dream for 20 years happen—the people, places or activi- gestures, facial expressions, even now and it’s very gratifying to see it ties that might be associated with it. tantrums—and evaluate the appro- become reality.” We want to know exactly what that priateness of this communication.” Reality starts for each new family behavior looks like—and what the She also uses standardized screening family or others do in response.” with a two-hour session that is called tools, informal conversation, and a This information, along with paren- history from the family to evaluate an arena assessment. Dr. Howie, tal observations from monitoring Specialty Nurse Pat Judsen, RN or target behaviors at home and school, Nurse Practitioner Susan Shields, will lead to a behavior support plan “A typical ARNP begins with a physical exam for use by every- stranger would one involved in the child’s care. not be able to Members of the tell that he’s Rehab Team— autistic. I’m very Speech/Language Pathologist Denise proud of that. Spornraft, Pediat- That’s taken SO ric Occupational Therapist/Clini- much work! He cal Coordinator now is excelling Teresa Leibforth, OT and Pediatric in certain areas Physical Therapist Hallie MacPher- on the typical son, PT—often placement tests. take turns sitting on the floor Math and science during the arena are off the charts assessment, en- gaging the child in for him. He’s a to rule out any medical issues or what looks like play. “We concentrate computer whiz.” genetic syndromes. Then Leanne on not being overwhelming for the Scalli, the team’s Psychometrist, child and the family,” says Howie. for problems with: feeding, the physi- performs age-appropriate cognitive “We’ll have maybe two or three cal aspects of speech (such as articu- testing. “It’s very important to see providers in a room working with the lation and pronunciation), language where a child is cognitively,” Howie family and the child. And it’s tailored comprehension and expression, and explains. “A lot of our care plan will to what the child needs.” use of language in social interaction. hinge on whether the child has delays Play is a vital evaluation tool, espe- with intellectual functioning or “The occupational therapist is look- cially for a child who will ultimately whether they’re within the normal or ing at the fine motor or hand skills,” be diagnosed with a disorder on advanced range.” Howie explains. “Can the child work the more severe end of the autism with activities of daily living—button While the child works with the spectrum. “I typically use a ‘play- and zip, use a spoon and fork? The center’s Rehabilitation Services based’ observation as part of the physical therapist is looking at gross Team, parents or caregivers talk with initial screening,” Spornraft explains. motor or big muscles. How are the Applied Behavior Analysis Direc- “I incorporate nonverbal language child’s strength, balance and coor- tor Bobbie Vaughn, PhD, BCBA or tasks—like giving directions for the dination? We’re finding quite a few Allana Luquette, BCBA. “We try to patient to follow and asking the child children with autism also have motor determine the ‘why’ of a child’s prob- to identify pictures or objects using coordination problems.” lem or unusual behaviors,” explains their gestures. I observe how children Vaughn. “We ask about the settings communicate to obtain their wants Recommendations from the rehab where this behavior is most likely to and needs—do they use signing, team are given to the parent on the 5 spot. And the physician will make interpersonal relationships. As they Spornraft. “Children learn about referrals so that families can begin to mature, it’s easy to see how this can tact, teamwork and appropriate obtain more resources—all of them lead to depression, social isolation play skills. As they learn to socialize right in the same building. Best of all, and even underemployment. For with these language skills, they’re this allows care to be coordinated, them, acquiring social skills can be a gaining valuable experience in a safe says Howie.

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