Category Archives: Family Focus Edition
CP Stands for Cool Person’s Disease
Like many students starting high school, Riley Taborda wanted to try something new. His choice this fall ultimately sprang from an old interest—video games.
Video games led him to marching band?
“I was drawn to this style of music because it’s upbeat,” explains Riley, 15. “And the music and coordination of moves were a lot like the music and quadrants in the video games I play.”
Marching band was new for Riley, as was percussion. He began playing cello in fourth grade, then took up trumpet and, most recently, tuba. Trumpet and tuba weren’t feasible in marching band, because Riley uses crutches to walk as a result of cerebral palsy. Instead, he stood in place to play the tam-tam (a type of gong), triangle, tambourine and suspended cymbal.
The marching band practiced five days a week before school and Monday nights. “The biggest challenges for me were getting up for early morning practices, learning how to stop and start the percussion instruments—and learning how not to drop the mallets while I’m playing,” Riley says. He rides a golf cart to his place on the field but stands throughout performances and competitions. “Just like the rest of the band,” he notes. “I want people to treat me the same as anyone else. I tell them that CP doesn’t stand for cerebral palsy. It stands for Cool Person’s Disease.”
Riley says he enjoys having the band create patterns behind him—but his favorite parts of marching band have involved camaraderie as much as music. “Band camp at the beginning of summer is one of the most fun things,” he says. “So are the bus rides to different competitions—and, of course, the people.” The band did well in competition this year, winning the Wildcat Classic in Omaha, Neb., placing third in New Brighton, Minn., and coming in second in Marshall, Minn.
Although the marching band’s season ended in October, Riley continues to play in the school band. He played tuba at a recent concert and will perform trumpet in jazz band and at pep fests. Cello is on hold for now because it conflicted with other classes. “There’s not enough time to do it all,” he says. “But I want to start up on it again next year.”
Outside of music, Riley participates in Boy Scouts and is a member of Special Olympics teams in softball, basketball, and track and field. He goes to physical therapy regularly to help strengthen his balance and endurance. He’s also undergone multiple orthopedic surgeries, muscle-lengthening procedures, and selective dorsal rhizotomy surgery at Gillette.
“All the surgeries have helped me walk better,” he says. “I hope that pretty soon I won’t need to use my crutches anymore.”
Having a SEMLS Procedure? Get Help Planning—Now!
Single-event multilevel surgery (SEMLS) is one of the most complex procedures we perform at Gillette. If your child is having this type of orthopedic surgery, be sure to ask about our preoperative SEMLS classes.
You’ll join other families to tour the hospital and meet with rehabilitation therapists, child life specialists, social workers and nurses. The session teaches you how to care for a child after SEMLS, with information on:
- Bathing and toileting
- Helping your child get in and out of bed and go up and down stairs
- Transferring your child into and out of a car
If you have questions or want to register, call Jackie Norling, physical therapist, at 651-312-3198. Or register by email: PreopClasses@gillettechildrens.com. Next classes are March 2 and May 4.
Please note: these sessions are only for families of children undergoing SEMLS. To learn about other nonmedical resources for Gillette patients and families, call Child and Family Services at 651-229-3855.
We’re Under Construction to Serve You Better
Gillette has upgrades in store at our St. Paul campus and west metro clinics. Maple Grove and Minnetonka are expanding, making it easier for west-metro patients to get appointments. And we’re renovating parts of our St. Paul campus!
Maple Grove
We’re expanding our clinic to add space for Child and Family Services, casting, splinting and physical therapy. We’ll also enlarge the waiting room.
Minnetonka
We’re opening Minnetonka Therapies in April. That will provide more room for therapy appointments at the new location—and more room for physician services at our existing Minnetonka Clinic! We’ll add exam rooms and complete the waiting room.
St. Paul
We’re closing the west half of our Orthopedics/Surgical Unit to remodel it into private rooms (one patient per room). The remodeled area will open in June. We’re also expanding our Dental space so our providers can see more patients there. You’ll also see new wall coverings, floors and finishing touches in the outpatient corridor.
Family Focus Edition – Upcoming Events
Muscular Dystrophy Lab Day/Open House
Saturday, Feb. 9, 10 a.m. to 1 p.m.
Paul and Sheila Wellstone Muscular Dystrophy Center
Academic Health Center, Fourth Floor
University of Minnesota
Visit the Wellstone Muscular Dystrophy Center to tour the lab, meet the staff, and get to know the researchers who are working toward a cure for muscle diseases. Kids and families can take part in fun “research experiments.” Enjoy free parking and refreshments. For more information, call 612-626-0822 or email mdcenter@umn.edu.
Muscular Dystrophy Association: Muscle Walk
Saturday, March 9, 7:45 a.m. to 9:30 a.m.
Mall of America
Bloomington, Minn.
This event brings people together in a fundraising effort to defeat muscle disease. To register, visit www.musclewalkmda.org/2013twincities
Epilepsy – Family Education Day
Saturday, April 13, 9:30 a.m. to 2 p.m.
Wilder Center
451 Lexington Parkway North
St. Paul, Minnesota
Gillette and the Epilepsy Foundation of Minnesota invite you to learn more about a child’s stages of development and the effect of those stages on epilepsy. You’ll learn about living well with epilepsy and hear about these topics:
- Life Stages and Epilepsy: Fostering Self-Efficacy Across the Life Span—Jen Maytum, doctor of nursing practice.
- The Importance of Sleep in Children With Underlying Neurological Conditions—Laurel Wills, M.D.
- Helping Children and Families Adjust to Seizures: What Parents Should Know—Katherine Buhrke, Ph.D.
- Epilepsy Foundation of Minnesota: Resources and Report
This event is free and includes a box lunch. For more information, email Nikki Baker at nbaker@efmn.org. To register, email rsvp@efmn.org.
Light Up the Night Gala
Saturday, May 4, 6 p.m.
Minneapolis Marriott southwest
5801 Opus Parkway
Hopkins, Minn.
Enjoy dinner, silent/live auctions and entertainment—featuring composer and guitarist Billy McLaughlin—while you support people who have epilepsy. Tickets are $100 per person and sponsorships are available. To learn more or order tickets, visit the Epilepsy Foundation of Minnesota website at www.efmn.org
Parent Connect Programs
Twin Cities; Fargo, N.D.
Ongoing
For information about Parent Connect programs in the Twin Cities and Fargo, N.D., or to learn about family events throughout Minnesota, visit the Epilepsy Foundation of Minnesota website at www.efmn.org.
Rett Syndrome Caregiver Education Day
Saturday, April 20
Gillette staff, University of Minnesota researchers, and the Minnesota Rett Syndrome Research Association will hold their sixth annual conference in April. It’s devoted to the latest in supportive therapies, research and education to improve the lives of people affected by Rett syndrome. Watch for details in next month’s Family Focus Edition.
