Inside Gillette Blog

All About Integrative Care at Gillette

Posted On: 03/27/2015

By Becky Schauer, Registered Nurse

Holism is a word that is often thrown around but frequently misused.  Holism actually means looking at the whole of a person and seeing that each part is interconnected.  In a holistic model of care, each Gillette Children's Specialty Healthcare Wellness Modelcircle represents an aspect of one’s level of wellness.  These circles include: physical, psychological (emotional), social, and spiritual aspects of health.  All of the circles in one’s life are interrelated and connected.  At Gillette Children’s Specialty Healthcare, we use the phrase ‘integrative care’ to describe health care that aims to use holism as the model of care delivery.  It combines both conventional treatments (Western medicine, e.g. medication, surgery) with complementary ones (non-Western, e.g. massage, acupuncture) and acknowledges that each play vital roles in one’s health. 

 Gillette’s Integrative Care Committee works to explore ways we can enhance and optimize our patients’ levels of wellness.  This is an exciting time for Gillette, as we’ve continued to add new options of integrative care for our patients.  Areas of focus include aromatherapy, massage, adaptive yoga, acupuncture, osteopathic manipulative therapy, and healing touch. We also focus on providing care for caregivers.  

In the past year, a group of Gillette employees attended a massage certification course to learn the skills needed to bring bedside massage to patients on the hospital’s inpatient units and at Gillette Lifetime Specialty Healthcare, our adult clinic.  We have also begun to educate our staff on the concept of mind-body connection and how to integrate this mindset into their daily care of patients.  We have trained 20 members of our staff in adaptive yoga and mind-body awareness. We’re also formalizing our aromatherapy policy, as we have found this modality to be well-received among patients and families.  Finally, several of our physicians are involved in Gillette’s integrative care initiatives. Scott Schwantes, M.D., is certified in medical acupuncture and Todd Dalberg, D.O., is certified in osteopathic manipulative therapy. These certifications complement the medical care they provide in their role as physicians. 

We hope that our patients will be as excited as we are to explore these new integrative options and their role in enhancing the exceptional care offered at Gillette.  Please contact your medical provider to find out more.

Meet Us Monday - Tom Novacheck, M.D.

Posted On: 03/23/2015

1.) What is your position and role at Gillette Children's Specialty Healthcare? I am a pediatric orthopedic surgeon and director of the James R. Gage Center for Gait and Motion Analysis. I work with our gait lab team — which includes engineers, technicians, and physical therapists — to gather information to understand problems with movement.

2.) What has been one of your most rewarding moments at Gillette?   The most rewarding moments are developing long-term relationships with children and their families. I have some families that I’ve been seeing for more than 20 years.

3.) How do you fit into caring for those who have cerebral palsy?  As an orthopedic surgeon, I focus on problems that impact a child’s bones and joints.  For children who have cerebral palsy, even when spasticity is diminished, they still can have problems with their bone and joint alignment. We want their muscles to have the best capacity that they can, so correcting a bone and joint deformity will help them with that.

4.) What are the benefits, both professionally and for our patients, in working with an interdisciplinary team?  Care for children who have cerebral palsy or other disabilities needs to be comprehensive because certain medical conditions can affect many different functions. That could be communication, it could be eating, it could be mobility, it could be problems with seizures, or learning. We offer all of those services here as part of a team in one organization. And because my colleagues and I know each other, I can trust that my patients are going to receive good care - and caring care – with any specialist they see. Then I can concentrate on what I think I do best.  And we all know that no one can be the best at everything!

5.) What innovations or advancements have you seen that benefit our patients?  Our Gait Lab is one of the best in the world and was the first to be accredited.  There are only 10 - 15 accredited Gait Labs in the country.  Accreditation indicates high quality and also dedication to patient care. Our Gait Lab also has a tremendous amount of experience. It’s one of the two or three oldest Gait Labs in the country – and certainly one of the busiest in the country in terms of the number of patients we see each year. With that comes a lot of experience and understanding of our patient population.

6.) What advice would you give a parent with a child who has cerebral palsy?  In my practice, it’s not very common that I’m telling the child or the family that “you have cerebral palsy.” They already know that, and that can be a devastating thing to hear for the first time.  From there, it’s time to pick up the pieces and say, “Okay, you know that you have cerebral palsy.  Let’s make sure you understand what cerebral palsy means. Now what are we going to do to help?” Most people gain comfort from knowledge. We try to educate, answer questions, clear up misconceptions — and because families see all of us Gillette specialists working together, they’re not getting this piece of information from this person, that piece of information from another person. They’re getting all of it together from a highly coordinated team.

7.) How and why did you become an orthopedic surgeon?  I went into orthopedics because I like mechanical things and I like sports.  However, I did not know that I wanted to work with pediatric patients. Within two weeks of starting my pediatric orthopedics rotation during my residency, I went home and told my wife, “I know what I want to do.” It was the opportunity to influence the way children grow and the opportunity to work with kids and their families.

My Gillette Story by Jessica Boerboom, Mom to Joe

Posted On: 03/20/2015

How would you describe your child to someone who hasn't met him or her?

Joe is 8 years old and in second grade. He is the sweetest guy!  He has an engineering-type brain — he wants to know how stuff works, and he questions and processes constantly. At the same time, he can be a goofball!  Joe also loves to read. He’ll read anything from Ninja Turtles books to books about Abraham Lincoln.

How did your family come to find out about Gillette?

The summer before Joe started kindergarten, we began to notice he couldn’t keep up with other kids. I remember being at a waterpark and watching him climb a set of circular stairs. All the kids were passing him and my girlfriend asked, “Do you think he’s declining at all?” Later that summer, on a trip to Mall of America, he fell seven times. We saw his pediatrician the day before a 10-day family vacation to Boston.  She asked him to climb the stairs without using the handrail. He told her, “I can’t — I will fall.”  They did a blood test and said they would be back in touch in about a week.  When the phone rang the very next day, I knew something was wrong. They told us they suspected muscle disease, and even mentioned muscular dystrophy, and told me “our expertise ends here.”  They called Gillette Children’s Specialty Healthcare and, due to the urgency, we were able to get an appointment right after we got home from our vacation. It was the longest 10-day vacation ever, but we were blessed to be with family.

We had to wait six weeks for blood and genetic testing to confirm Joe’s diagnosis. It was the longest six weeks of my life.  Finally, it was confirmed that Joe has Becker muscular dystrophy.  Being newly diagnosed is an agonizing time period. That’s why, today, I’m a contact at the Muscular Dystrophy Association (MDA) so I can help provide newly diagnosed families with emotional support.

What treatments and services has your child received at Gillette?

Joe sees Dr. Stephen Smith for neurology and Dr. Mark Gormley for physician medicine and rehabilitation. He wears ankle-foot orthoses at night and he’s done some physical therapy to work on mobility at Gillette, too. During one of our first visits at Gillette, we were connected with representatives from the MDA so that we could take advantage of their services and resources, such as a loaner stroller for Joe, and most recently, a scooter.

What has your experience at Gillette been like for your child and family?

Everyone—from Dr. Smith, to Dr. Gormley to Joe’s neuromuscular nurse, Kristin Morgan, is really great. We especially love Kristin. I think it’s wonderful we know she will be Joe’s nurse at every appointment. Kristin will call us 3 to 4 weeks before Joe’s next appointment just to see how he’s doing and if we have concerns so she can have answers ready at our next visit. We like all the familiar faces. Gillette knows our family and knows Joe. When Joe has an appointment near his birthday, they remember it and give him a gift. It’s a comfortable place for kids and we feel welcomed at Gillette.

What about your child makes you most proud?

Joe knows his own limitations, but he never complains. He just rolls with it. Joe has some tough days, but he is a really positive kid who takes it all in stride. He’s doing good—as best as he can be doing.

Meet Us Monday – Jamie Welle, Child Life Specialist

Posted On: 03/16/2015

1.) What is your position and role at Gillette? As a Certified Child Life Specialist at Gillette Children’s Specialty Healthcare I provide a number of services to patients and families. I help to reduce the stress and anxiety associated with hospitalization for children through preparation for procedures, procedural support and distraction, medical play, and creating a more relaxing environment.  I also explain things in a "kid friendly" and developmentally appropriate way. My role varies with each family that I interact with but the most important thing is advocating and providing patient and family centered care.

Meet Us Monday - Gillette Children's Specialty Healthcare2.) Do you have a favorite Gillette story or memory? One of my favorite memories is when our entire care team worked together to overcome a number of challenges we encountered with a patient. It was incredible to watch the teamwork and communication that went into providing an amazing level of care. At the same time, the team advocated for the patient and family so they could have the resources they needed to cope with the hospitalization of their child. I was incredibly impressed with the work ethic and creative solutions the team came up with to help make it a more positive experience for the family.

3.) What are some of your hobbies outside of work? I enjoy figure skating and spending time with family. I am from northern Minnesota so I love winter sports!

4.) Do you have any children or pets? I have a boxer puppy named Belle. No kids yet!

5.) If you could travel anywhere, where would you go? I would love to travel back to Europe someday. I have been to Germany, but haven't explored elsewhere. Each year I try to go to a new place.

6.) What is one fun fact about you? I have two different colored eyes.

Medicaid is a lifesaver for my family. This is why.

Posted On: 03/11/2015

By Adele Harris

I don’t like to think about what life would be like without Medicaid’s assistance for my 9-year-old daughter Lily’s medical expenses. I honestly don’t know where we would be without it. Would we be homeless? Would Lily be able to receive the care she needs?  

Complications during Lily’s birth left her without oxygen until she was delivered by emergency caesarian section. It was the scariest day of my life. Lily was diagnosed with a severe form of cerebral palsy as an infant and has received care at Gillette Children’s Specialty Healthcare ever since.  We feel so fortunate that Gillette is less than 20 minutes from our White Bear Lake, Minnesota home.  Lily’s cerebral palsy causes abnormally tight muscle tone. This makes movement more difficult for Lily than other children her age. Lily also experiences seizures. Thanks to her care at Gillette, those seizures are currently under control.  

Today, Lily is followed by five specialists at Gillette, including neurology, orthopedic surgery and pediatric rehabilitation medicine. She receives regular injections of botulinum toxin (Botox) and phenol, along with frequent physical therapy, to relax her muscles. Before Gillette, movement was difficult – even painful – for Lily. Now she rolls around and roughhouses with her sister like any other child.

I credit Lily’s coordinated care at Gillette for helping her remain healthy and happy despite her complex medical needs.  And I credit Medicaid for helping my family remain afloat. Raising a child with special needs is incredibly expensive. Quite honestly, we wouldn’t be able to handle the expense without Medicaid. Lily’s feeding and medication expenses alone, for example, cost more than $1,500 per month.

As Lily has grown, additional Gillette specialists – including spine, dental and seating services – have become part of her care plan.  She will soon begin speech therapy to, hopefully, begin using an augmentative communication device. We have our little ways of communicating, but expanding that is something we've wanted to do for a long time. We want Lily to realize her fullest potential.

Medicaid is, truly, an essential service for my family and countless others in Minnesota.  Of course, we hope that someday, we won’t need Medicaid. But until that day comes, it is vital us — and more importantly, it is vital to Lily's health — to have that help.

My Gillette Story by Tommy Collison

Posted On: 03/10/2015

Originally from rural Ireland, I grew up among cows, computers, and not much else. Now I’m a writer studying journalism and politics at New York University. When I’m not studying, I edit part of the student newspaper. My life today is thanks to the staff at Gillette Children's Specialty Healthcare, who gave me the confidence to move from Ireland to the U.S.

My Gillette Story: Tommy CollisonWhen I was born, my mom thought that my cries had an unusual pitch and worried that something was wrong. In the hospital, she asked the pediatrician about it, but her concern was dismissed. Over the months that followed, I was slow to develop. My parents weren’t overly perturbed, because the doctors had reassured them that the crying was due to colic, and I'd settled down. Plus, I was their third child. By this stage, they were experienced parents who accepted the fact that children develop at their own rate. It wasn’t until my routine 12-month developmental check that I was termed “developmentally delayed.” When I was 18 months old, I was officially diagnosed with cerebral palsy.

My mom became an expert on the subject. She read everything she could find. A physical medicine and rehabilitation specialist gave her a book by James R. Gage, M.D., of Gillette and she read it cover to cover with a medical dictionary by her side. After hearing Dr. Gage speak at a conference, my mom decided that if I should ever need surgery, we would go abroad and ask him for an opinion.

When I was 9, my parents and I began researching the surgical options at Gillette. My desire was pretty simple—I wanted to be able to stand straighter and walk faster.  A year later, in 2004, I arrived in the U.S. to undergo surgery with Dr. Gage and Tom Novacheck, M.D. I was astounded by how caring everyone was, bothMy Gillette Story by Tommy Collison inside the hospital and out of it. My dad tells the story of Dr. Gage coming into pre-op to talk to me and ask if I had any questions. My only question was about the color of the teddy bear that the nurses had promised me. I think that’s a pretty good indicator of the standard of care Gillette offers. I was about to undergo single-event multi-level surgery, and yet the teddy bear color was my most pressing concern.

After that initial surgery, I had two follow-up procedures with Dr. Novacheck in 2010 and 2012. During the second one, my brothers came from San Francisco to take care of me, allowing my parents to celebrate their wedding anniversary. They proved themselves totally capable of taking care of their “favorite youngest brother.”  The event sticks out in my mind as not so much a surgery but as a bonding experience.

If I have one piece of advice for other kids or teens who have a “disability,” it’s this: don’t let it define you. I wasn’t a 14-year-old who had cerebral palsy. I was the 14-year-old who loved drums, who read every book he could lay his hands on, and who probably played his music too loud. As people, we’re not defined by our abilities or disabilities. It’s our choices, our aspirations, and our attitudes that define us. So, go out there and discover your passions—as I did.

Editor's Note: Are you looking for a way to connect with people who have cerebral palsy and their families? Join the Cerebral Palsy Resource Group on Facebook! This community forum is the perfect place to ask questions, share your experiences and receive support from the cerebral palsy community.

Meet Us Monday - Nicole Williams Doonan, M.D.

Posted On: 03/09/2015

1.) What is your position and role at Gillette?  I am a pediatric neurologist at Gillette Children's Specialty Healthcare.

Meet Us Monday - Nicole Williams Doonan, M.D. 2.) What has been one of your most rewarding moments at Gillette? I am lucky, because I experience rewarding moments on a regular basis at Gillette. I enjoy spending time with families and children in clinic. I have met so many wonderful and inspiring families through my work at Gillette. I am most rewarded when I am able to provide an explanation regarding a particular symptom and develop a treatment plan that may include education and reassurance, or a medical intervention for symptom relief. 

3.) How does your position fit into caring for those who have cerebral palsy?  As a neurologist, I am one of the specialists who introduce the diagnosis of cerebral palsy to a family. Neurologists also provide information to families about the cause of cerebral palsy for their child, which may include interpreting brain imaging studies or ordering new studies.  Neurologists directly manage or co-manage many of the symptoms of cerebral palsy (such as spasticity and motor delays) and neurological conditions that can sometimes accompany cerebral palsy (such as epilepsy, cognitive disabilities, attention difficulties, language delays, dysautonomia and sensory issues) by recommending medications, rehabilitative therapies, psychology/neuropsychology referrals and/or educational interventions.  Neurologists also screen for related medical conditions that may require additional treatment, such as vision impairment, swallowing difficulties, growth concerns, sleep problems or orthopedic abnormalities.

4.) What are the benefits of working with an interdisciplinary team of caregivers?  The logistics are easier for both families and providers when the necessary specialists all practice together in one medical system. At Gillette, I often consult directly with other physician specialties, psychologists/neuropsychologists, and therapists about my patients.  This results in comprehensive, higher quality care. We all evaluate a child through the lens of our specialty training and personal experiences, so children at Gillette benefit from the knowledge of multiple experts.  I benefit professionally by constantly learning from my colleagues.  If I don’t know the answer to a patient’s question, there is likely someone at Gillette who can answer or point me to someone else to ask.  We also have an amazing staff of social workers who help families access available community resources.          

5.) What advice would you give a parent with a child who has cerebral palsy? My advice changes depending on how old a child is, how early it is in the diagnosis, what the child’s needs are and the parents’ questions.  In general, I stress that children with cerebral palsy fall on a spectrum and each child is unique.  Although the symptoms of cerebral palsy can change over time, I emphasize that cerebral palsy is not a progressive or degenerative disorder.  Although we don’t have treatments that can cure the underlying brain abnormalities that result in cerebral palsy, we have many treatments to help children reach their maximum potential.  For parents of young children who have mild cerebral palsy, I might tell them “success stories” about teenagers I take care of with similar symptoms, who play basketball or tutor kids or are going off to college.  I also try to be aware of the fact that parents may have emotional struggles at certain ages or stages outside of the initial diagnostic time period, such as when their child misses certain educational milestones or social milestones (driving, prom, etc.).

6.) What are some of your hobbies outside of work? Running — often around the Minneapolis Chain of Lakes and typically running in at least one 10-mile or half marathon race each year, hiking, cross country skiing, playing piano, singing, learning about wine, baking and travel (favorite repeat vacations include Hawaii and France).

7.) What is one fun fact about you? I caught my personal best largemouth bass 21-1/2 inches (6 pounds) while fishing with my husband last summer.

How Dreams Lead to Success, by Hayden Zeleny

Posted On: 03/03/2015

(Note: Hayden's essay was originally published in the Pioneer Press).

I have cerebral palsy. Cerebral palsy is a birth defect that can damage kids' brains, cause tight muscles and twist bones. Sometimes I feel like it's hard to fit in because I am different from my friends. My dream is to be treated just like everyone else and make sure people do not feel sorry for someone with a disability. In order to make my dream come true, I try to teach people about CP and what it is like to have a disability.

I am the only person in my school using an iPad in class. Even though I want to try and write, I get told I have to use the iPad because my writing is bad. Sometimes when I try and write a lot of things one of the staff will say I have to work on the iPad. It can be embarrassing to have other kids look at me and wonder why I am using it. If they ask, I explain that my fingers don't work as well as most people.

Another time one of the para(professional)s who helps me told me it is extra work for the teacher to have to grade my assignments on the iPad. That made me mad because it's not my fault that I have cerebral palsy. It also makes me work harder on my dream -- it's not OK to make me feel bad because I have a disability. The more people that I educate, the more successful I feel about my dream.

It's hard to have cerebral palsy because sometimes everyone feels sorry for you when they see you having surgery or needing adaptive technology. It also means lots of surgery and stuff that is not fun like Botox injections, physical therapy, stretching and sleeping in a knee immobilizer or wearing braces on your legs, like I do.

I am lucky because some kids with cerebral palsy can't walk or talk. I could not walk until I was 3. Then I had a lot of surgeries. When I was younger, I was in the hospital for five weeks then needed to use a wheelchair. For four years in a row I had another surgery. Sometimes in school, kids would try and push my wheelchair like it was a toy. Or they would talk to me like I was a baby because I needed to use a walker. This made me mad. Or they would be really nice to me just because I had surgery and they feel sorry for me. I did not like this either. It was frustrating.

My mom and I made a photo album that told my story and explained what cerebral palsy is and why I needed surgery. The most important part is where we described just because I cannot walk as well as everyone else does not mean my feelings are any different. I can still do most activities, have fun and be a good friend. Every year we share this book with my class so they can learn about my disability. This helps me with my dream of not being treated any differently and also tells my classmates not to feel sorry for me.

One year the hospital had a campaign showing famous people with kids who have disabilities. They sign a pledge saying they believe every kid should be treated the same. My mom has a friend who tried out for the TV show 'The Voice.' He went with me to the hospital where he sang to kids. They took pictures of him signing the pledge on my behalf and put it on their website so more people could learn not to make fun of kids with disabilities. I was proud that I was able to be a part of this.

Lots of times doctors, teachers and even my parents will say things might be too hard for me. I almost didn't get to enter this contest because my mom said there were a lot of rules to follow. But my family knows I try and they say as long as I try they are proud of me. They have taught me to always be brave and strong and do my best. 

By telling other people my story they have a better understanding of what life can be like for someone with cerebral palsy and hopefully make them understand that a person with a disability is just like everyone else. Even though I am still a kid, I feel like I am doing a good job with my dream because I have taught a lot of people how to treat a person with a disability fairly. This makes me feel successful.

Meet Us Monday - Rebecca Busch, Registered Nurse

Posted On: 03/02/2015

Meet Us Monday - Rebecca Busch, Registered Nurse1.) What is your position and role at Gillette? I am a Night Charge Nurse on the inpatient rehabilitation unit at Gillette Children’s Specialty Healthcare.

2.) Do you have a favorite Gillette story or memory? I will always remember when one of my patients with a very serious brain injury, who had not been interactive, surprised me by spelling out “Tylenol” using sign language. She continued to amaze me, her family and caregivers as she pushed herself towards a miraculous recovery. 

3.) What are some of your hobbies outside of work? I enjoy spending time with family and friends, baking, traveling, and being outside.

4.) Do you have any children or pets? Our daughter, Angelina, is 10 weeks old.

5.) What is one fun fact about you? My other home is Tanzania. My husband and I direct a non-profit organization and run a special education center in a rural village in Tanzania.

Advocating for Rare Diseases

Posted On: 02/27/2015

Editor’s Note: Scott Schwantes, M.D., spoke on Tuesday, February 25 at Minnesota’s Rare Disease Day at the Capitol.  He, alongside legislators and a Gillette patient, advocated for children and adults who have a rare disease. Below are his remarks. Thank you Dr. Schwantes for moving advocacy forward!

Advocating for Rare Diseases Gillette Children's Specialty HealthcareI have the honor of serving as Gillette Children’s Specialty Healthcare’s Associate Medical Director of Pediatrics. My clinical practice focuses on pediatric hospice and palliative medicine. In this work, I’ve had the opportunity to work with some truly incredible and amazing families and I’ve come to appreciate that the “rare” becomes commonplace.

As we have come to appreciate today, children who have rare diseases comprise a very real and special part of our communities.

  • 30 million people in the US are living with rare diseases. Although the disease itself may be rare, nearly 10 percent of the population are living with a rare disease
  • Nearly two-thirds of those affected by rare diseases are children

Whether the underlying condition has a name such as DeBarsy syndrome, Schinzel-Gideion syndrome, Infantile Neuroaxonal Dystrophy or some as-yet un-named genetic syndrome resulting in a life-threatening condition, the condition is far from “rare” for these families. Even though some rare disorders affect perhaps only 50 children nationwide, to their families, it is present every day.

My work focuses on partnering with families of children who have rare disease to develop a “philosophy of care.” This philosophy of care:

  • Meets the child’s medical needs
  • Strives to fulfill the entire family’s sense of well-being by respecting their goals and values
  • Establishes a medical plan of care that ensures the individual child is the beneficiary of our interventions

Through this partnership, we work together to help children who have rare diseases thrive within their local communities. At Gillette we recognize that life doesn’t happen in the hospital or clinic, but at home and in the community.

So as we raise our voices in recognition of rare diseases, I want to express my gratitude to all of you. Thank you for allowing me the time to talk about the very special children and their families who can still thrive despite these rare diseases. Thank you for your continued support and advocacy so children who have rare diseases can have every opportunity to experience life in a way that’s guided by their family’s desires. Thank you for simply seeing the child and not the rare disease.

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