daniel’s care
Hospice of the Bluegrass Daniel’s Care is a special pediatric care program provided by Hospice of the Bluegrass. If your child has been diagnosed with a lifethreatening illness, Daniel’s Care provides diversified assistance. The two components of Daniel’s Care are palliative care and hospice care. Palliative Care is for children/adolescents diagnosed with a life-threatening condition that may not require the extensive services typically provided by the Daniel’s Care hospice program. For both programs, a specially trained team of multi-disciplinary professionals works specifically with children who have lifethreatening illnesses. This specialized team cares for anyone from birth to 21 years of age. Nurses help provide medical care in the home. Social workers and therapists will work with your child and other family members on coping with the illness. Hospice of the Bluegrass 2312 Alexandria Drive Lexington, KY 40504 (859) 276-5344 or (800) 876-6005 • www.hospicebg.org which could be fatal. Dani can sit propped up in her motorized wheelchair for up to two hours before fatigue sets in. To aid her labored breathing, she uses a BiPAP mask, a device that helps get more air into the lungs. A nurse stays with Dani five nights a week from 11 p.m. to 7 a.m. to monitor her breathing and vital signs while she sleeps. Beth, the former University of Kentucky softball coach, and Frank, a Lexington engineer, have not had a date night since the diagnosis. Life with Dani is precarious. A year ago, when Dani had trouble breathing, Beth and Frank rushed her to Cincinnati Children’s Hospital where she spent a month in intensive care. Still, the Pruitts are an upbeat, happy family, and the source of that joy is Dani. She knows she is different – the
Pruitts have fielded some difficult questions from their daughter. “But she doesn’t dwell on it. It doesn’t get her down,” Frank said. Of course not – she’s got too many interests to pursue. Dani, a first-grader, loves school. She is assisted in class by an aid, is popular with her classmates and follows along from home during the flu season through the use of Skype. Dani also “loves, loves, loves” the plays at the Lexington Children’s Theatre, looks forward to weekend outings with the family, and even a trip to the kitchen displays at Lowe’s is a treat. For the past three years, Dani has played on the Braves in the Toyota Miracle League, a baseball program for kids with disabilities. Halloween is a favorite holiday, and in April, she spent a weekend at the Center for Courageous Kids Camp in Scottsville outside of
Bowling Green. Basically, Dani is up for anything and everything. No wonder Beth and Frank see her as a normal child. “Intellectually, I know she has a unique look,” Beth said. “But to me, she looks normal, typical, just perfectly fine.”
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ince Dani’s diagnosis, the Pruitts have received help from family, friends, fellow members of OKI Families of SMA, but nothing has matched the assistance offered by Daniel’s Care of Hospice of the Bluegrass. “It’s a phenomenal program,” said Beth, who rattles off the services – nurses and certified nursing assistants on call 24/7, help with medications and vaccinations, a social worker, parental respite, clergy. And the biggest gift yet? No medical paperwork. Hospice takes care of it all. In fact, between private insurance and Medicaid, the Pruitts’ out-of-pocket medical costs are exactly zero. “In a time of incredible stress, Hospice works very hard to take as much stress out of our lives as possible,” Beth said. “To be released of that burden is a wonderful thing.” Plus, Hospice workers and volunteers love Dani. “Within a few weeks, all the Hospice workers fall in love with Dani,” Beth said. “They treat her as a kid, not a disease. They see her the way we see her.” Hospice has freed up the Pruitts for their most important job – loving Dani, who has changed their lives. “Now, I don’t feel pity when I see a handicapped kid,” Frank said. “Dani taught me that. She has changed my definition of happiness.” t 2011 Exceptional Family KY
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