Inside Gillette Blog


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.


Meet Us Monday – Heath Marvel, Music Therapist

Posted On: 02/23/2015

1.) What is your position and role at Gillette? I am a music therapist at Gillette Children’s Specialty Healthcare. As a board-certified music therapist, I use music to help patients make positive changes in behavior, level of functioning, and quality of life. This can mean many things! I often sing, play instruments, or write songs with patients to make their hospital visit and other therapies more enjoyable Meet Us Monday – Heath Marvel, Music Therapist and meaningful.  Sometimes I will play live music to help distract or relax patients during a medical procedure. Other times, especially with patients who are in our rehab unit, I will use the structure of music in interventions to cue speech, develop motor skills, and improve memory. I’ve been with Gillette since last October and love it here!  

2.) Do you have a favorite Gillette story or memory? Last month I sang “Shake It Off” and a few country songs with a patient who had been having a rough afternoon on the adult unit. The next day, I received a letter from him saying that his music therapy session with me was the best thing that happened that day and that it helped him feel better all day long. He also wrote that I was better than Taylor Swift, which I doubt, but it was a rewarding moment nonetheless.

3.) What are some of your hobbies outside of work? I enjoy going to movies and live music, playing drums, spending time with friends, playing board games and trivia, and checking out new restaurants. I’m also at the gym quite a bit and run outside when it’s not freezing out.

4.) Do you have any children or pets? Not yet, but I’d love to get a dog sometime soon. I grew up with black labs, so larger dogs have a special place in my heart.

5.) If you could travel anywhere, where would you go? Europe, particularly England and Germany, would be awesome because of their history and culture. Thailand is a close second. There are elephants that paint pictures there.

6.) What is one fun fact about you? My cousin is the drummer for the band Limp Bizkit. No joke. I wouldn’t make that up.


Meet Us Monday - Martin McLean, Lead MRI Technologist

Posted On: 02/13/2015

1.) What is your position and role at Gillette? I am the Lead Magnetic Resonance Imaging (MRI) Technologist at Gillette Children’s Specialty Healthcare. My role is to help prep, coordinate, and scan patients in MRI.  I also help with any questions or concerns that may come up with staff or patients regarding MRIs.

Meet Us Mondays - Martin McLean Gillette Childrens2.) Do you have a favorite Gillette story or memory? My favorite Gillette story was when a fellow tech and I were getting a patient ready for an MRI.  We were in our control area with the patient’s sister and their interpreter.  The young lady was carrying on and the interpreter shared that this girl thought I was my co-workers father – when in fact I was only three years older. We had a good laugh about it, and still do to this day. It’s the little things that make working with kids so fun.

3.) What are some of your hobbies outside of work? Going to Twins games, playing sports with friends and family, spending time with my wife and daughter, and pretty much anything else that involved being outside and active.

4.) Do you have any children or pets? I have a five-year-old hyperactive golden retriever named Penny, and a 16 month old daughter named Josie.  I’m hoping they will keep each other busy soon, because they have way more energy than me!

5.) If you could travel anywhere, where would you go? I’ve always wanted to go to Scotland and Ireland.  At this time of year (February) I would settle for anything warm and on a beach.

6.) What is one fun fact about you? Although it’s been a while since we have done it, a friend and I enjoy brewing our own beer.


Building a Community of Givers

Posted On: 02/13/2015

Last November, at Frattallone’s Ace Hardware in Arden Hills, Minnesota, something special happened. A customer walked in and asked if he could write a check to Gillette Children’s Specialty Healthcare. The man knew that Ace supported Gillette because he’d gotten an email from the store’s co-owner, Mike Frattallone (pictured left).

Frattallone had penned an email to his entire address book of customers, urging them to give to Gillette on Give to the Max Day. He let them know that he’d match each donation, dollar for dollar. Frattallone’s Ace Hardware has a long history of supporting Gillette through its Children’s Miracle Network Hospitals partnership.

Frattallone has a personal reason for raising money for Gillette. His daughter had been evaluated at Gillette because of a foot curvature. The experience of being an anxious father—and the memory of the excellent care Gillette provided—has stayed with him.

“We have almost 700 employees,” says Frattallone. “Many of them have shared personal stories about nephews and nieces and family members who are patients at Gillette. You don’t have to go far to find someone who has been touched by this hospital.”

When you ask people to give, Frattallone believes, the stories that you get back are inspiring.

Like the story of the Ace employees who volunteered to give Gillette a day of hourly wages so they could demonstrate for customers that they, too, were committed to giving.

Or the story of the customer who, when he found out that the store’s fundraising goal for the day was $100, wrote a check to Gillette for $100 right there at the register. “All of a sudden, we had a new goal for the day—$200—and a new story to tell our other customers when it came time to ask for their donations,” Frattalone says.

He isn’t surprised by the generosity. “People come to Ace Hardware because of the customer service and expertise,” he says. “They like the engagement. They welcome community involvement, and they’re incredibly giving.”


Meet Us Monday – Todd Dalberg, M.D.

Posted On: 02/06/2015

1.) What is your position and role at Gillette? I am a pediatrician specializing in pediatric pain, palliative care and complementary medicine.

Meet Us Monday – Todd Dalberg, M.D. Gillette Children's2.) Can you tell us a little about your education/career history? I received my undergraduate degrees from Minnesota State University, Mankato followed by medical school at the University of New England, College of Osteopathic Medicine.  From there I completed my residency training in pediatrics at the University of Connecticut.  I pursued a fellowship in pediatric hematology and oncology at Oregon Health & Science University and spent an additional research year through an institutional grant where I completed a masters in clinical research.  Lastly, I completed a fellowship in pediatric hospice and palliative medicine at Akron Children’s Hospital before joining the wonderful group at Gillette Children’s Specialty Healthcare.

3.) Do you have a favorite Gillette story or memory? I was recently paged to pay a social visit to a young boy I had met on the inpt service, and when he spotted me, he took a running leap and delivered a monster hug!  It’s moments like that effectively “carry” me through the challenges we as providers face. 

4.) What are some of your hobbies outside of work? I love the outdoors, so in the winter I enjoy XC skiing, ice skating, and indoor climbing/bouldering and when it comes to warmer months I enjoy cycling, road and mountain, as well as camping, standup paddle boarding, or a simple game of bocce ball. 

5.) Do you have any children or pets? No children, but I do have two cats, Bocce and Rabbi, who behave more like dogs than they do cats (they’ve traveled some 10k miles by car, have gone camping, and will eat anything in site). 

6.) If you could travel anywhere, where would you go? I would love to travel to Tibet, Mt Everest base camp (no need to risk death at 29k ft), then Bali. 

7.) What is one fun fact about you? My cousin, who’s a Marine, was a pallbearer for Ronald Regan and was the one who handed Nancy Regan the flag that draped his coffin.  Not really a fact about me, but I do like that story.


My Gillette Story by Rob Collins, Dad to Cole

Posted On: 02/03/2015

Our family’s journey with epilepsy started in 2007 with an isolated seizure.  Our son Cole, who was just 2 years old at the time, doubled over in early September with a full body seizure.  We had him checked out and thought we were in the clear.  By the time Thanksgiving rolled around, though, Cole was having over 100 seizures per day, of multiple kinds.  We were desperate to get help.  We asked My Gillette Story by Rob Collins, Dad to Colemy brother, Gary, who is a surgeon at Regions Hospital here in St. Paul, for a suggestion.  He told us to go to Gillette Children’s Specialty Healthcare.  We were referred to Dr. Beverly Wical, a pediatric neurologist at Gillette. 

We tried different medications, none of which seemed to work.  Gillette suggested we get a second opinion, which we did.  That doctor from a different facility told us “pad your kitchen floor and get him a helmet.  I’ve seen this many times.  This is as good as it’ll ever get.”  We were devastated.  That was the Friday before Christmas break of 2007.  Dr. Wical was leaving for two weeks and we were scared.  She cleared her schedule that Friday afternoon and met with us for over two hours.  I remember during that meeting she held up her hand and told us that of the patients she has seen with similar severity of seizures, she could count on one hand the number of patients that are functioning at average or above-average levels. 

I know this doesn’t sound like the best of odds with the information we were getting, but it gave us hope that Cole could be one of the five.  She proceeded to tell us that we’d keep trying new combinations of treatments/meds and hopefully we’d find the magic combination that would work for Cole.  The doctors and staff at Gillette worked continuously to find that magic combination. 

While Gillette wasn’t able to give us the answers as to what our future would hold, we left that meeting not feeling hopeless.

We got through Christmas, but Cole was still having seizures.  We were worried about our son, our family, our finances – wondering if we’d be able to pay for Cole’s medical care.  Could we keep our business solvent with one of us having to be with Cole 24/7 and having two other young daughters to care for?  

By the end of January, 2008, Cole was still seizing and meds weren’t helping.  We talked with Gillette about trying the ketogenic diet, a highly specialized diet that can help treat certain types of epilepsy.  They wanted a 120 day commitment.  At that time, 120 days seemed like an eternity. 

My wife Tammy’s father, Merle, had come to all our appointments with us and helped with Cole so both Tammy and I could concentrate on the doctor.  When we got home and said were going to try this high-fat, low carb, low protein, low calorie diet to control seizures, our families said they didn’t see any way that bacon and butter would stop Cole’s My Gillette Story by Rob Collins, Dad to Coleseizures.  But Merle simply said, “They don’t have any other choice.”  And that was it.  We got started on the diet. 

We noticed immediately some clarity.  It took 90 days, but on day 90, Cole went seizure free for a whole day and, essentially, hasn’t looked back. 

Cole has been seizure free for just over six years.  As we were preparing this blog post, we realized that Karri Larson, our Gillette dietician, has approved everything that Cole has eaten over the last six or so years. 

We’ve taken the diet on road trips to Florida, Branson, Texas, Sedona, The Grand Canyon, Yellowstone and Glacier Parks as well as many times to Lutsen on Minnesota’s North Shore.  Cole is now 9 years old and thriving. He is in a partial Spanish Immersion program in Forest Lake Public Schools.  He is in Boy Scouts, likes to camp, hike, play Legos and Skylanders.  He’s active in his church and loves to swim.

Thank you Karri.  Thank you to Shani Norberg, M.D.,Nancy Kammer, M.D., Beverly Wical, M.D. and so many of the Gillette nurses and support staff that have been so helpful and have given us our life back.

 


Meet Us Monday – Dennis Jolley, Vice President for Institutional Advancement

Posted On: 01/30/2015

1.) What is your position and role at Gillette? Vice President for Institutional Advancement – but few really know what that means. In short, Institutional Advancement aligns all communications, advertising, branding, community relations and fundraising into a single unit to improve consistency of messaging, awareness and support. It takes a pretty forward-looking organization to move this direction, which is one reason why I wanted to come to Gillette Children's Specialty Healthcare for the opportunity.

2.) Can you tell us a little about your education/career history? I’ve spent my entire career working in health and education. I’ve had an array of jobs, from speechwriter for the US Surgeon General, to middle school teacher, to fundraiser to marketing director. I like to say that ultimately I am a misplaced cultural anthropologist – the thread through my schooling and career is that I am very interested in how our communications shape culture, beliefs and actions on both the individual and societal scale.

3.) Why did you consider coming to Gillette? There were three things that initially attracted me to Gillette: (1) I wanted to get back into child health in either healthcare delivery or advocacy, and (2) I wanted to be someplace that was very mission-driven, and (3) I wanted to be in an organization that realizes the world of communications, advertising and fundraising is changing rapidly and is willing to try new things to adapt. Once I began the interview process and learned more about Gillette’s history and mission and met the leadership team here, I knew that this was the kind of place I wanted to be a part of. I want to be able to contribute to our efforts to keep the core what makes Gillette special, while helping to transform the organization to be able to adapt and thrive in the new – and constantly changing – healthcare economy.

4.) What are some of your hobbies outside of work? I’m one of those people who has to move around a lot, so I enjoy getting out and riding my bicycle, going for a swim or even just taking a walk. That is good because I also really like good food and drink – I am loving the great restaurants in the Twin Cities – and social activities. I also enjoy art, music, movies and games  – things I can do with my family.

5.) Do you have any children or pets? I have a son, Alex, who will turn 13 in February. He’s a really great kid – he’s incredibly kind and he’s smarter than his parents (we’re just lucky we have more experience than him). Alex is in 7th grade, but attends West High School in Salt Lake City where he is doing really well with a tough course load that includes high school level Arabic and Computer Programming along with all of the standard classes. We don’t have pets because my spouse is allergic to pretty much every animal on this planet except reptiles, and they creep me out so I won’t allow them.

6.) If you could travel anywhere, where would you go? This is a hard question for me – I really love to travel and have been lucky to go to some incredible places. In terms of places I’ve never been but would like to see, I would like to tour the eastern Mediterranean – Venice through the Balkans and Greece to Istanbul – or India. I absolutely loved my time in China, Thailand and Australia and would go back to any of those places in a heartbeat. Also, the moon. That would be cool.

7.) What is one fun fact about you? I was once detained for several hours by the Chinese Army. Long story.

8.) How are you adjusting to life in Minnesota? I really love it here so far. We’ve had a few days that are colder than my native southern California body would prefer, but ultimately that’s a minor inconvenience. People have been incredibly friendly, and Minnesota drivers seem both safer and more polite than Utah drivers. I love all of the sunshine – even when it’s cold – and am excited to explore the state more.


Gillette Physician Receives Grant for Spinal Muscular Atrophy (SMA) Research

Posted On: 01/30/2015

As one of the region’s top neuromuscular programs, Gillette Children’s Specialty Healthcare treats children who have a variety of disorders that impact their muscle function. Our Neuromuscular Clinic offers advanced treatments and supportive therapies to help minimize the effects of neuromuscular conditions.  

Research plays an important role in our Neuromuscular Clinic, as well.  Integrating research and clinical services helps us remain at the forefront of treatments that improve our patients’ health and quality of life.  Just this week, we learned some exciting news: Gillette’s own Walter Truong, M.D., will receive a $50,000 grant from Families of SMA, an organization dedicated to funding research in spinal muscular atrophy (SMA) treatment and care.

SMA is a neuromuscular disorder that causes muscle weakness and decreased muscle mass (atrophy). As a result, it can impede activities such as crawling, walking, and eating. Because of their muscle weakness, children who have SMA often cannot stand independently and use stander devices as a means of maintaining bone health. Dr. Truong’s research will measure the effectiveness of standers, which are often incorporated into therapy programs for children who have SMA, in improving bone strength, preventing fractures, and improving quality of life.

During the study, a small group of Gillette patients will gradually increase the amount of time they spend in a stander device over a year. Regular scans will measure growth in the children’s bone strength resulting from increased standing time. The results, along with a future larger study slated to include hundreds of children from throughout the U.S., will help determine whether more standing makes bones stronger and whether this can decrease the number of fractures in children with SMA.

Congratulations to Dr. Truong and Gillette’s entire Neuromuscular Clinic team on this exciting announcement!  Click here to learn more about Dr. Truong’s research.


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