Inside Gillette Blog

Creativity and Collaboration: Custom Seating for Children who have Spinal Muscular Atrophy

Posted On: 10/08/2015

By Brian Reilly, seating practitioner

In the Assistive Technology Department at Gillette Children’s Specialty Healthcare, customized seating system components are designed and often redesigned. They are built, rebuilt, modified and fitted onto patients’ wheelchairs as their needs change over time. Our process is customized for the unique needs of each individual child.

At Gillette, seating practitioners like myself collaborate with a wide variety of individuals — including physicians, nurses, therapists, orthotists, group home caregivers, teachers, insurers, durable medical equipment (DME) vendors, families, and of course patients themselves. Our goal is to provide functionally appropriate adaptive equipment that meets our patients’ individual, family, community and care team needs.

This holistic, collaborative, patient-centered and creative approach is unique to Gillette, and the outcomes we see here are frequently quite remarkable and beneficial to others around our region, country, and even world. Gillette provides everything we need for these highly customized projects: quality materials and tools, state of the art facilities and equipment, experienced specialists, and the time and training to meet our patients’ standards for excellence.

Spinal muscular atrophy, for instance, is among the many complex conditions Gillette specializes in treating. Effective treatment of this degenerative neuromuscular condition requires a great deal of teamwork, which brings to mind some inspiring patients we’ve worked with over the years.

Sophia is one of the first patients that comes to mind. She first drove a power wheelchair at just 2 years old!  Incorporating ideas from her parents, school, Gillette therapists and countless others, we were able to create additional age-appropriate (and fun!) activities for Sophia to enjoy with her power wheelchair. For example, we worked with Sophia’s mother to find new and creative ways for Sophia to access her computer, control her fingers and even amplify her voice. From drawing with sidewalk chalk to adaptive skiing and ballet, there are many things Sophia can do with a little creativity and adaptation.

Mary Kate, who happens to be friends with Sophia, has experienced similar changes and evolution of her powered mobility systems over the years. Mary Kate’s mom, a physical therapist herself, has guided the care team with great passion and gentleness, helping Mary Kate to master driving, enjoy graceful adaptive dance performances, participate in 4H, and work with animals on her family’s farm.

Collaborating with families like these, and the many other Gillette professionals involved, is very rewarding. Health care delivery at its finest, I’d say. All of our families say Gillette rocks!  Our job is to make sure nothing stops our patients from enjoying their favorite things and being all they can be.

Pictures (from top): Mary Kate and Sophia enjoying a day at the mall above, Sophia with her sisters and custom fiber optic finger drive controls.

Gillette Joins Global Celebration of People Who Have Cerebral Palsy

Posted On: 10/07/2015

When Tommy Collison, a boy in rural Ireland, was diagnosed with cerebral palsy (CP) at 18 months old, his mom became an expert on the condition. After devouring books and articles about the topic, she concluded: If Tommy ever needed surgery, she would bring him to Gillette Children’s Specialty Healthcare.

Tommy’s mom wasn’t alone. In the past decade, patients have traveled to Gillette in St. Paul, MN from 20 countries to receive CP care. And, today, they join us in celebrating World Cerebral Palsy Day. In more than 50 nations, people who have CP, along with their communities, are working to ensure they have the same rights, access and opportunities as everyone else. At Gillette, we join this movement by supporting our patients no matter where in the world they call home.

When international families travel to Gillette for care, they receive help with far more than coordinating appointments. Our social workers and child life specialists assist with travel and lodging arrangements, and make sure children feel comfortable before surgery.  Families can also feel confident that they’re not alone in seeking out Gillette from abroad. Each year, dozens of medical professionals from around the globe visit to learn from our experts.

Eight years after his initial diagnosis, Tommy Collison did have surgery—in 2004, 2010 and 2012. He came to Gillette for all three procedures. Now, he studies journalism at New York University, and he’s even contributed a blog post to Gillette! “My life today is thanks to the staff at Gillette Children's Specialty Healthcare,” Tommy says. He’s one of the many patients we celebrate today.

Meet Us Monday - Joyce Trost, Manager of Research Administration

Posted On: 10/05/2015

What is your position and role at Gillette Children’s Specialty Healthcare? I am the Manager of Research Administration. I oversee all aspects of the research process including administrative, financial and scientific. You might say I’m the person who—along with my team—opens doors for research at Gillette, making the process run smoothly for our doctors, clinical scientists, and patient families who choose to participate.   

Meet Us Monday - Joyce Trost, Manager of Research AdministrationDo you have a favorite Gillette story or memory? Over the past 24 years I have accumulated many memories. It’s hard to pick a favorite but the everyday moments really shine through. I have seen successes and failures, cried and laughed with families and co-workers. I have celebrated with families when their child has walked for the first time, been able to carry their violin up on stage to play without having to use a walker, and actually been able to run for the first time after surgery.

In my current role, I don’t get as much patient contact and I miss that. But I know that the work I do now is still helping in a broader sense (the balcony view) as we work on the research trying to figure out the best way to provide care for the kids seen at Gillette.

What do you like best about working at Gillette? I love creating and developing – something I get to do a lot of in my role as a manager. I am proud to have helped grow research at Gillette to where it is today. I have a great team, and get to work with people from across the organization to provide opportunities for families to participate in research and to help figure out how to optimize outcomes for our patients.

Do you have any children or pets? My husband and I live on a hobby farm down by Cannon Falls with 14 grass fed cattle, which we raise and sell, a big garden and an orchard where we raise vegetables, berries and fruit trees. We have four children ages 13, 16, 17 and 20 and a rescue dog.

If you could travel anywhere, where would you go? My husband and I would love to travel to Italy and enjoy all of the great fresh foods and sights!

What is one fun fact about you? My training was as a physical therapist. I have worked at Gillette in several different areas include Rehab, the Center for Gait and Motion Analysis (where I became passionate about research and the process of discovery), and then in the Research Administration Department. I am currently working on my PhD in Rehabilitation Science looking at the impact of fatigue on the electrical activity of the muscle in boys who have Duchenne muscular dystrophy.

Fall, Fun and Safety — Tips Every Parent Should Know

Posted On: 10/01/2015

The air feels crisp, geese fly south and leaves turn bright hues of orange, red and gold.  Besides the start of a new school year, fall brings much-anticipated activities for children.  By following some simple safety guidelines, parents can make sure kids’ favorite fall traditions are a fun and safe experience for the whole family.

Pumpkin Carving
Children’s second-most-loved Halloween tradition (behind trick-or-treating, of course!) is creating a spooky jack-o-lantern to light up the night.  To prevent hand injuries, be sure to carve in a dry and well-lit area. Any moisture, including those slimy pumpkin innards, can cause slipping that might lead to injuries.  Leave the carving to adults—kids can help by drawing a pattern on the pumpkin and clean out the inside pulp and seeds.  And consider purchasing a pumpkin carving kit.  They include a special saw that isn’t sharp enough to cause a serious cut. Lastly, pick up a flameless, battery-operated candle to light up your jack-o-lantern. No flame means no risk of fire.

Whether a haunted hayride or an apple orchard activity, hayrides are a favorite experience for kids of all ages.  Take care when loading and unloading, making sure the hayride is at a complete stop.  Hold on to children and railings at all times, as the bumpy ride can easily bounce them off their seat.  Whether the hayride is pulled by a tractor or horse, it’s always a good idea to keep a safe distance away.

Corn Mazes
While fun, corn mazes can quickly become scary for young children—especially if they’re left alone.  Always accompany children into the maze and make sure your group knows to stick together.  Make sure, too, that the maze isn’t too close to parking lots or roads.  Be mindful of uneven walking surfaces, or fallen corn stalks, that could cause trips or falls. And remember that rain can result in muddy—and therefore, slippery—surfaces.

For Summer Research Intern, Helping Kids is Personal

Posted On: 09/29/2015

When 23-year-old Uyen Truong noticed a call-out for summer research interns at Gillette Children’s Specialty Healthcare this past spring, she felt compelled to apply. “Working with kids is my passion,” says Uyen. “And I have a special connection with Gillette.”  

Uyen has been a Gillette patient for as long as she can remember.  She has a genetic brittle bone disease called osteopetrosis, which means her bones contain too much calcium and easily fracture.  “I’ve had multiple breaks treated at Gillette,” she says. Uyen has continued to benefit from Gillette’s services into adulthood — most recently, for adaptive technology to help her succeed in medical school at the University of Minnesota, starting this fall.

Uyen Finds Her Calling
Uyen’s internship at Gillette merged her passion for helping children with her scientific background. She also wanted to experience firsthand how physicians integrate research into their practice. “Clinical research is people-oriented,” explains Uyen. “I wanted to pay it forward by helping others the same way I have been helped my whole life.”

As part of the program, Uyen and her fellow research interns collaborated with Gillette mentors — MDs and PhDs — on ongoing research projects. Specific topics varied, but all related to Gillette’s core mission: to provide outstanding care to children with often rare and complex medical conditions.

“Our interns are typically medical school students or students planning to enter another health care field,” says Meghan Munger, research coordinator at Gillette. “We want to cultivate their interest in research and encourage them to incorporate evidence-based medicine into their future careers.”

Making an Impact through Research
Uyen’s research is focused on casting in children following a femoral or pelvic osteotomy, both major orthopedic surgeries that help realign bones in the femur or hips.  She and her physician mentor, Walter Truong, M.D. (no relation to Uyen) hope to identify the ideal type of cast after complex hip surgeries.  The ideal cast would be easy to take care of yet still help patients experience less pain — and therefore, require less pain medication — after surgery.

The project holds personal significance for Uyen, as it stands to impact children who, like her, have experienced surgeries on their bones and joints. She hopes her work, which will continue for at least another year, will help guide future patient care.

“I understand what it’s like to be a patient and know that being in pain is difficult,” says Uyen. “I want to be someone who helps people feel better, helps them accomplish the things they hope to do.”  

Click here to learn more about Gillette’s summer research internship program.

Photo caption: Uyen is pictured with her Gillette mentors, clinical scientist Susan Novotny and Walter Truong, M.D.

Jonathan’s Story: Thriving with Hydrocephalus

Posted On: 09/22/2015

By Jennifer Bulthuis, Jonathan’s mom

Jonathan was diagnosed with hydrocephalus when he was six months old. We knew something was wrong because Jonathan cried and screamed anytime we tried to lay him down.  At six months old, he could only sleep in his crib for eight minutes without waking up screaming and needing to be held. 

Finding out that Jonathan had a life-long brain condition, requiring brain surgery, was a shock and difficult to comprehend. For months, we concentrated on his medical situation, making sure the shunt was working and meeting with numerous specialist to learn as much as we could about what was going on inside this tiny body. Then, it hit us like a ton of bricks….. this was forever. We needed to know more than just the medical side of Jonathan’s hydrocephalus and we felt a need to educate ourselves on how to help Jonathan live with his condition. I asked Jonathan’s pediatrician, Dr. Lutz, for help and asked him to recommend a neurosurgeon who would take the time to talk to us, be honest and direct, and talk in terms that we could understand. He suggested Michael Partington, M.D. at Gillette Specialty Healthcare. 

I’ll never forget our first appointment with Dr. Partington. Our 4:30pm consultation turned into a ninety minute conversation, including answers to ALL the questions on our very long list! Over the past few years, Dr. Partington has patiently and thoroughly answered all our questions about how to live, as a family, with hydrocephalus. He’s helped us learn how to talk to other parents about hydrocephalus, plan for play dates, safely play sports, talk to the school and Jonathan’s teachers, tips for traveling, and SO much more!

Today, Jonathan is six years old and attends full day kindergarten. He goes to the library with his class, plays in the gym, eats in the cafeteria, and runs with his friends on the playground. Jonathan has playdates, goes to birthday parties, and loves to brag about catching more walleyes this summer than his Dad. He is the best of friends with his sister Abby, most of the time. Jonathan has a heart of gold. He’s so loving, and has the BEST sense of humor. I know most days Jonathan never thinks about his hydrocephalus and that makes us so happy.  He’s just a regular kid, thanks to the team of professionals caring for him. We know he will always have hydrocephalus, but we have chosen not to let this define us as a family. It’s simply a part of us. 

We feel so very blessed to have Gillette and all their experts on our team! Everyone we have worked with has been amazing and Jonathan truly feels like his trips to the clinic and stays in the hospital are fun.  What a compliment! He enjoys the video games in the waiting room, the fabulous selection of toys brought into the hospital room by the Child Life Specialist, and still talks about the gift card he received for waiting patiently when an MRI was taking longer than normal. Doctor visits are a regular part of our life and always will be. At Gillette, we are welcomed, respected, and never made to feel rushed. This truly changes the experience. Thank you for making us feel cared for, like family.

Meet Us Monday - Danielle Pricco, Registered Nurse

Posted On: 09/21/2015

What is your position and role at Gillette Children's Specialty Healthcare? I have been a registered nurse on the Adult Inpatient Unit for just over three years.  My day-to-day activities vary a lot – from  working on the floor with patients to representing my unit on inpatient committees. One of my favorite roles is being a certified nurse preceptor and orienting new nurses to the unit. I really enjoying the enthusiasm new nurses have to make a difference here at Gillette.

Meet Us Monday - Danielle Pricco, Registered NurseDo you have a favorite Gillette story or memory?  Some of my favorite memories are from the time I spent with my “transition to practice” nursing group immediately after starting at Gillette. The group consisted of nurses that had just graduated – like me! It helped me a lot with my transition into the new and often challenging role of a nurse. We could easily relate to one another and help each other along the journey.

What do you like best about working at Gillette? What I love most about Gillette is the friendly atmosphere. It feels very much like a family and everyone gets to know each other no matter what department you work. It is so welcoming to walk down the hallway and be greeted by the many smiling faces.

Do you have any children or pets? I have a two year old English Springer Spaniel named Gus. He is full of energy and brings a lot of joy to my husband and I. He keeps us very active outside whether it's running, rollerblading or just playing fetch.

If you could travel anywhere, where would you go? If I could travel anywhere it would be Ireland because of the beautiful, lush greenery and pubs and great food.

What is one fun fact about you? I met my now husband while stopped at a stoplight in town. We then dated for nine years, a majority of them long distance before getting married.

 What are some of your hobbies outside of work? Outside of work I really enjoy staying active rollerblading, biking or doing hot yoga. I also enjoy getting together with family and friends to try new restaurants or breweries.

Vaccination Isn’t a Question for Special Needs Kids

Posted On: 09/17/2015

With another flu season almost upon us, the annual debate over the flu shot has resurfaced.  Naysayers point out the ineffectiveness of last year’s flu vaccine — the strain that sickened many didn’t match the strain the vaccine protected against, resulting in flu-related hospitalizations hitting a 9-year high. If I got the flu shot last year and still came down with the flu, why bother with the shot this year?   Another argument cites the theory of “herd immunity.”  If everyone around me is vaccinated, I’ll be protected too.

This is dangerous logic, especially when it relates to children. The CDC points to several key groups at high risk for developing flu-related complications.  First on this list is children younger than 5, but especially children younger than 2.  At this young age, kids lack fully-developed immune systems needed to fight the virus.  The result is hospitalization and, in worst-case-scenarios, death.  

Risk is further escalated for children who have complex medical conditions. The CDC describes this high-risk group as “people who have neurological and neurodevelopmental conditions, including disorders of the brain, spinal cord, peripheral nerve, and muscle such as cerebral palsy, epilepsy, stroke, intellectual disability, moderate to severe developmental delay, muscular dystrophy, or spinal cord injury.”

Sound familiar?  It should. This is the exact patient population treated at Gillette.  These patients fall into not one, but TWO high-risk groups:  children and people who have disabilities. For medically fragile children, vaccination isn’t a question.  It’s a necessity.  And for those around them, it’s a responsibility. “I can’t tell you how many patients I see who’ve experienced severe complications resulting from influenza,” says Scott Schwantes, M.D., pediatrician and palliative care physician.  “For children already dealing with a host of other health issues, the flu can take the body to its breaking point.”   

While not 100 percent foolproof, a flu vaccination is your and your child’s best protection against a serious — and preventable — illness this fall and winter.  So let’s team up, get vaccinated, and help protect those in our community who are most vulnerable.

Image: Barbara Joers, Gillette president and CEO, gets her flu shot.

Remembering Wren: A Family’s Tradition of Giving Back to Gillette

Posted On: 09/14/2015

Every year since 2010, Wren’s family, along with others in their community, celebrate the life of the playful, loving, happy little girl they once knew. “She loved to be outside and go for walks,” says Erica Sinclair. “That’s one of the reasons we hold a walk in her memory.”

Remembering Wren: A Family’s Tradition of Giving Back to GilletteErica’s daughter, Wren, passed away in 2009. When she was 2 years old, Wren sustained a severe head injury at a day care near their home in western Wisconsin. She was airlifted to the Level I Pediatric Trauma Center operated by Regions Hospital and Gillette Children’s Specialty Healthcare, but Wren’s family was told that she wouldn’t survive her injuries. “You can’t imagine how horrible it is to have your child fighting for her life,” says Erica, “but everyone at Gillette was very kind.” Wren passed away a few days later with her family by her side.

Although Wren has been gone for six years, her family says they’re still thankful for Gillette’s kindness and efforts to save her life. “The doctors and nurses at Gillette had hearts of gold,” recalls Erica. To honor Wren and show their appreciation for Gillette, the family hosts an annual 5K run/walk. “We think about Wren's Memorial Run/Walk as a holiday,” explains Matt Sprague, Wren’s father. “We start planning in the spring, and for us, it feels like we are planning a huge celebration in memory of Wren.”

They donate part of the proceeds to Gillette’s Pediatric Intensive Care Unit and use some of the proceeds to fund a scholarship for a high school student going into the medical field. “People always ask us why we don’t give the money to a ‘local’ hospital,” says Matt. “When your child has a serious injury, Gillette is the best ‘local’ hospital. Gillette doesn’t just serve St. Paul, it serves our entire region.”

Now in its fifth year, the Wren Sprague Memorial Run/Walk is proud to have donated $32,000 to Gillette’s Pediatric Intensive Care Unit. Wren’s family recently returned to Gillette to present a $9,000 check from the 2015 run/walk, bringing that total up to $41,000 (pictured right). “To us, the annual donation represents our love for Wren,” explains Erica. “It’s a way for us to reach out to families in similar situations. Our hope is that we help children recover and return home with their families.”

Wren’s family says they want to keep her run/walk going and hope it will become bigger and more successful each year. “Six years later, people still talk about Wren,” says Erica. “We don't want that to stop. We want people to remember Wren.”

For more information, visit the Wren Sprague Memorial & Scholarship Fund.

Kids and Questions: Talking to Your Child’s Class About Disabilities

Posted On: 09/11/2015

Caroline, mom to a second-grader who has cerebral palsy, received some surprising news upon dropping her daughter off at school yesterday morning. It’s a new school for her daughter, and she’s the only “new kid” in class. Her daughter wears glasses and uses leg braces to help her walk.

“Parents have started asking the teacher what my daughter has,” wrote Caroline on the Cerebral Palsy Resource Group Facebook page.  "I told the teacher that it was OK to tell other parents that she has cerebral palsy but she is just like the other kids… Any other suggestions or just words of support are appreciated.”  Within minutes, she had received numerous comments from other group members — and it became clear the conversation was larger than her.

With school back in full swing, many parents of children who have disabilities find themselves in similar situations.  Elementary school is often the ideal time to educate kids—and their parents—about your child’s condition.  And with bullying a persistent problem regardless of age, being proactive is a great way to nip any negative perceptions in the bud.

  • “Show and Tell” with your child’s class. Bring in baby pictures and any special mementos to share. It will help classmates understand his or her condition—and it will also help them see that, in so many ways, he or she is just like they are. Depending on your child’s comfort level, he or she can join your presentation or simply sit and listen.
  • Meet with the teacher.  Meeting with your child’s teachers before the school year starts is a great way to educate them about your child’s condition, personality, and how he or she   prefers to talk about (or, not talk about) their condition. 
  • Send home a note.  A friendly, informal note introducing your child and addressing common “FAQs” is an effective way to reach other parents. 
  • Read (or write!) a book.  Whether done via crayons or via your home computer, a short book telling your child’s story in kid-friendly language will reach other children on their level.  For ideas, check out this family’s book.  Another great tool is “It’s Okay to Ask,” a new children’s picture book about kids of different abilities.
  • Learn from others. Find a community of supporters – whether it’s online or in person – where you can ask questions like Caroline did.

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