Inside Gillette Blog

“She Doesn’t Let Epilepsy Define Her”

Posted On: 11/19/2015

By Katey Anderson, Aryssa’s mom

Aryssa’s journey started several years ago. We knew from the time she was very young that something just wasn’t “right.”  Aryssa started attending an early childhood special education preschool when she was 3, and that’s when we first heard about the possibility of epilepsy.  A teacher thought we should have her eye fluttering checked out, because it might be seizures.  Over the next couple of years we spoke to several doctors about it, but it was always attributed to other things, such as avoidance and anxiety. 

It wasn’t until the summer before she was in second grade that we knew she was, in fact, having seizures.  That day in August she had a cluster of seizures that lasted for hours.  The emergency room doctor referred us to another hospital, where they eventually diagnosed her with epilepsy.  That day was one of the hardest yet relieving days of my life.  We FINALLY had answers, yet I knew we also had a long road ahead of us.  We stayed at that hospital for two years, but I just didn’t feel it was the right “fit” for us. 

Gillette Children’s Specialty Healthcare’s name kept popping up, and I decided it was time for a second opinion.  We were given a referral for Gillette from Aryssa’s pediatrician.  Our first appointment we met with pediatric neurologist Timothy Feyma, M.D.  During that appointment, I learned more about epilepsy and the specific types of seizures Aryssa had than I had in two years at our previous hospital.  Dr. Feyma truly wanted to find a reason for her seizures (if possible).  He treated Aryssa as an individual, not just another patient.  He also was very clear in letting me know that Aryssa’s issues were NOT MY FAULT! This is something parents, especially moms, struggle with.  Sometimes a parent’s guilt can be worse than the diagnosis. 

Since finding Gillette, Aryssa’s road has been a bumpy one. She has struggled with her epilepsy a lot during the past year, but I’m so happy we found Gillette and Dr.  Feyma when we did.  The daytime nurses and the telehealth nurses I have called in the middle of the night have been nothing short of amazing. They have always been helpful and willing to answer any questions I have.  I can’t say thank you enough for all they’ve done, even if it was just being a calm voice on the other end of the phone.

Today Aryssa is a happy, loving 12-year-old.  She’s in seventh grade and turning into a typical teenager!  She still receives support in school, and probably will for the rest of her life. But despite her struggles, she always tries to have a smile on her face!  She’s the best big sister and she and her brother, Isaiah, are best friends.  She loves watching sports and is a huge Justin Bieber fan.  On the outside you would never know the struggles she has endured in her short lifetime. Her strength and ability to overcome those struggles has made not only her, but our entire family, stronger. Epilepsy may be her diagnosis, but she doesn’t let it define her!

Celebrating and Supporting Families in Rural Minnesota

Posted On: 11/19/2015

Children who are born with a disability, or who experience a traumatic injury, come from all walks of life and hail from all types of communities.  All have one commonality:  they need easy access to specialized medical care to live the healthiest and happiest lives possible. 

Dedicated to Rural Communities
Helping kids thrive in their home communities — whether city, suburb or small town — is why Gillette’s Outreach Clinics exist.  It’s also why we join in celebrating the 5th annual National Rural Health Day today.  We treat children from every county in Minnesota — thousands of whom live in rural communities.  And we’re committed to making sure these patients receive the care they need just as easily as those who live near our St. Paul, Minnesota-based hospital and clinics.

Close-knit and with a strong work ethic, rural communities play a vital role in shaping our country’s culture and economy. But increasingly, many small towns face issues with access to, and availability of, health care providers.  Barriers to care for people living in non-urban areas are sometimes more than just physical. Many families are uncomfortable driving into major urban areas for care—or, they simply can’t afford to do so.  

Towards Seamless and Accessible Care
As seen on the map to the left/right, Gillette operates 15 clinics in smaller cities and rural areas throughout Minnesota. Those clinics mean children from some of the poorest and most remote areas of our state have access to specialty services like rehabilitation medicine, neurology, neurosurgery and orthopedics. Patients can also receive adjustments to their wheelchairs, braces, and other assistive devices from the comfort of their hometown.   

Besides filling a gap in care for children who have rare and complex conditions, Gillette also serves as a resource to rural and small town primary care providers. Their collaborative relationship gives local providers more confidence in the care they provide, and gives patients and families greater trust in their community physicians. 

Supporting Entire Families
For the Meyer family of Hibbing, Minnesota, Gillette’s Outreach Clinics do more than make their daughter Sara’s (pictured right) complex condition manageable.  They also provide a lifeline—a sense of normalcy—when it’s needed most. “Outreach clinics in greater Minnesota have drastically reduced the number of trips we make to the Twin Cities each year,” says Sara’s mom, Diana Meyer. A self-professed “groupie” of outreach physician Kevin Murphy, M.D., the family relies on Murphy to help sift through medical records from Sara’s many providers.

But Meyer says Gillette’s support isn’t limited to Sara’s medical care—it extends to the entire family’s well-being. “A lot of clinics forget that as parents of complex kids, we don't get to have many social interactions where someone is asking about us also and not just our child,” she adds. “Dr. Murphy and the outreach clinic team has gotten to know our family and makes sure we, as, parents are ‘hanging in there’ too.”

Six Signs Your Baby Might Have a Birth Brachial Plexus Injury

Posted On: 11/17/2015

Soon-to-be parents look forward to celebrating all that comes with the long-awaited arrival of a new baby. But what can sometimes be the toughest part of that journey—the baby’s delivery—can occasionally cause problems down the road. Occasionally, a difficult labor and delivery can result in a birth brachial plexus injury, a relatively rare condition that affects roughly four infants in 1,000 per year.    

Gillette orthopedic surgeon Ann Van Heest, M.D., explains what a birth brachial plexus injury is, the signs and symptoms to look for, and treatment options.

Q: What causes a birth brachial plexus injury
Dr. Van Heest: The brachial plexus is a network of nerves that begins at the spinal cord in the neck and allows messages from the brain to reach the shoulder, arm and hand. Birth brachial plexus injuries occur when the nerves stretch or tear during the birth process. For example, the baby’s shoulders might become wedged in the birth canal (shoulder dystocia). The damaged nerves can interfere with and impair movement or sensation in the hand, wrist, elbow and shoulder. A pediatric orthopedic specialist can evaluate babies and children who have these problems. They can also work with families to develop an effective treatment plan.

Q: How can I tell if my infant has a birth brachial plexus injury?
Dr. Van Heest:  Most babies that have birth brachial plexus injury experienced a difficult delivery. The delivery may have required use of forceps or vacuum assistance.  Most often your baby would have been a large baby that had difficulty fitting through the birth canal. Your baby might have a birth brachial plexus injury if you or your pediatrician notice any of these six signs immediately following birth. Talk to your pediatrician if you observe any of these.

  • Your baby favors one arm or uses one arm more than the other arm
  • One of your baby’s arms is weaker than the other arm
  • Your baby doesn’t squeeze your fingers
  • Your baby doesn’t bend his or her wrist
  • Your baby doesn’t bend or straighten his or her elbow
  • Your baby doesn’t raise his or her arm.

Q: What are the treatment options for birth brachial plexus injury?
Dr. Van Heest:  In most cases, birth brachial plexus injuries can be effectively treated with occupational therapy—gentle exercises you can do with your baby several times a day to strengthen the weaker arm. If the nerves are severely damaged or don’t improve with occupational therapy, a pediatric orthopedic specialist might recommend surgery to correct bone, joint or muscle problems. If your child is older and if occupational therapy alone isn’t effective, other treatments could include splints, casts or constraint-induced movement therapy. Using these techniques on the stronger arm encourages children to use the weaker arm.

Click here to learn more about birth brachial plexus injuries.

Pictured: Azaynia, who has birth brachial plexus injury, exercises her weaker arm with Gillette occupational therapist, Alyssa.

Health Insurance: Pick the Plan That Fits Your Family

Posted On: 11/13/2015

Open enrollment has arrived. For many people, now’s the time to select next year’s health insurance.

If you or a family member needs frequent medical care, due to a disability or chronic health condition, your policy decision can be especially important—and, in some cases, especially confusing. Carefully weigh your options before you pick a plan.

More Than Money

Your insurance choice comes down to more than dollars and cents. Compare plans’ other aspects, too.

Covered Services Matter

Your needs might require that you have coverage for certain types of care—for example, rehabilitation therapy, prescription drugs, or chronic disease management. Check the summary of benefits document to find out what a plan does—and doesn’t—cover.

Know Who’s in the Networks

A plan’s copays, coinsurance rates, and out-of-pocket maximums might vary depending on whether you use providers and facilities from its network. If you have preferred providers or facilities, check to see if they’re in-network for any plans available to you.

Number Crunching

To calculate total costs for the plans you’re considering, try to compare “apples to apples.” That means taking into account all parts of the equation—including premiums, deductibles, copay and coinsurance amounts, and out-of-pocket maximums.

Keep in mind:

  • If you don’t need a lot of health care, you might not reach your deductible over the course of the year. In that case, your annual cost would include your premium payments plus any health care expenses you incur during the year.
  • If you need a lot of health care during the year, you might reach not only your deductible, but also your out-of-pocket maximum. In that case, your annual cost would include your premium payments plus the out-of-pocket maximum amount. Health care expenses beyond that would be 100-percent covered.
  • With some plans, you might be able to open a flexible spending account (FSA) or health savings account (HSA), allowing you to save pretax money to pay health care expenses. Your employer might offer to contribute to these accounts. If so, as you compare the costs of your options, remember to factor in that money you’ll receive.
  • In a low- or no-deductible plan, medical bills might be lower (just copays or coinsurance amounts) than they would be in a high-deductible plan, where you pay full amounts until you reach your deductible. However, when you calculate each plan’s total cost—including premiums, employer contributions, etc.—the high-deductible plan might cost less, overall.

Ask for Help

Health insurance decisions are complex. If you’re unsure about which plan to choose, contact the insurance companies to ask questions, or seek help from someone who can offer expertise—such as a human resources staff member, a social worker or a financial adviser.

Veterans Answer the Calling to Serve

Posted On: 11/11/2015

For Rob Wagner, a life’s purpose is what he calls “soul work”

Rob Wagner, M.D., says he’s never felt comfortable when people thank him for his military service. “I’m embarrassed,” he admits. “I was never shot at, and I never shot at anyone. So my experience is different than many others’.”

Wagner volunteered during the Vietnam era as a way, he says, of gaining maturity. “My dad, who was career Army, said that GIs who were drafted after college regretted burning their college years drinking and partying,” he recalls. “They wished they could do it again.”

After watching Johnny Shiloh at age 11, Wagner decided to join the Army after high school and go to college later. “It looked like patriotism, but it was really a desire for excitement,” he explains. He signed up for language school and studied Korean for a year, then was stationed in South Korea. “The work involved intercepting North Korean military radio transmissions,” he remembers. “You had to recognize important messages and record them.”

After completing his service, Wagner traveled throughout Asia and Australia, where he worked on a farm and a lobster boat. Shortly before he left Darwin, Australia, tropical cyclone Tracy hit, killing 71 people and destroying 80 percent of area homes. “The city was evacuated after the cyclone,” Wagner remembers, “but before we left, we volunteered. Medical people were flown in to help. That’s when I knew I was going to be a doctor.”

Soon afterward, he applied to college in Great Britain, where he earned a degree in marine biology and applied zoology. “I let go of medicine because it seemed too much like a fantasy,” he says. Then he met some young doctors and realized that medical school wasn’t out of reach. He studied family medicine at the University of Minnesota and completed a residency in family medicine at St. Paul–Ramsey Medical Center (today’s Regions Hospital).

Soon after taking a job with Group Health, Wagner says, he hit a slump. “I wasn’t out saving lives in Africa. It wasn’t the vision I’d had of being a doctor,” he recalls. “But then I saw I was looking at it in the wrong way. I thought being heroic in life meant traveling the world, climbing mountains, whitewater rafting. But it’s more subtle than that. I redefined my life’s purpose and never had to do it again.”

That purpose, he realized, went beyond being a good doctor. It involved the kinds of interactions that he calls “soul work.”

“What I wanted to do was be of service,” he says. “For patients and families, I’m an interface with a complicated industry.” He focuses on listening closely to patients, then helping them understand issues and options so they can make appropriate decisions. 

Recently, Wagner says, he had an epiphany about his career. “The next time someone thanks me for my military service,” he notes, “I’ll say, ‘That young man went in search of his own maturity. Don’t overplay his actions.’ What I do now is service.”

Pioneering Treatment at Gillette Gives Cooper Independence

Posted On: 11/10/2015

Cooper Wilson recently sat on the bench at the Minnesota Wild Hockey game as part of the franchise’s “Bench Buddies” program. For Cooper’s mom, Denine Wilson, meeting hometown hockey heroes wasn’t the highlight of the night. The real highlight for Wilson was seeing her son walk to the ice and take his seat on the bench by himself.

As recently as two years ago, Cooper was barely able to button his own shirt, let alone have the strength and energy to attend a hockey game.

Cooper has dystonia, a progressive condition that causes uncontrollable, twisting and repetitive movements. Through Gillette Children’s Specialty Healthcare, Cooper and his family had tried every standard treatment option available to improve his movement and quality of life, including medication, physical therapy, and botulinum toxin treatment.  But his condition worsened.

“I could see us moving forward with him being wheelchair-bound and with limited mobility,” remembers Wilson. “I could already see us going down that path.”

But Cooper’s family didn’t give up, and neither did Gillette. Gillette is one of a few hospitals in the nation that has FDA approval to offer pediatric deep brain stimulation (DBS) to treat dystonia. The success of DBS surgery has created a new path for Cooper.

Gillette’s world-class medical team has one mission: improving the lives of kids who have disabilities and complex medical conditions. This mission—Gillette’s driving force—helps patients achieve new levels of independence, health and happiness.

Immediate Results Offer Hope
During the DBS procedure, Cooper’s surgeon implanted a medical device—called a neurostimulator—under the surface of his chest. In addition, a soft, flexible wire—called a lead—was implanted in his brain. The neurostimulator helps regulate Cooper’s movements by sending electrical signals through the lead to certain areas of the brain. The device sends stimulation 24 hours a day, every day.

Although DBS has been around for 30 years for adults who have Parkinson’s disease, it’s relatively new in its application for kids who have dystonia. And it’s working for Cooper.

“We could see the results immediately,” says Wilson. “Right away after deep brain stimulation, his arms and hands were better. He was able to adjust his belt and shoes better.”

DBS helped build Cooper’s abilities, and Gillette helped build his confidence. “The doctors here at Gillette make me feel that I am not the only one with this disorder, and they make me feel like I can do anything,” says Cooper.

Although he doesn’t play hockey, Cooper does play soccer. “I used to worry about whether he’d be able to walk,” says Wilson. “Now I worry about how he’s going to fit in on the soccer team. And it’s nice. It’s nice to have normal worries.”

The only person more determined than Gillette and his family to keep Cooper as independent as possible is Cooper himself.

Click here to watch KSTP-TV's recent story about Cooper.

Meet Braxton’s Pen Pals from Around the World!

Posted On: 11/03/2015

Last week we introduced you to 8-year-old Braxton and his mom, Molly (pictured right).  The family—who lives in the small northern Minnesota town of Hibbing—reached out to Gillette in hopes of finding Braxton, who has dwarfism, a pen pal who also has dwarfism and is around Braxton’s age.

And find they did!  Our Facebook post hit like a lightning bolt, receiving more than 700 shares and ultimately reaching hundreds of thousands of people—all in less than 72 hours.  And the best part?  Braxton found six little boys who have dwarfism, from around the country and world, who want to be his friend.

“I am blown away from all the love you all have shown me and my boys today!” said Molly, via Facebook, about the outpouring of support. “Braxton is extremely happy and gave me huge hugs!”

 “At the end of the day, this was about a mom who wanted to find her son a friend he could identify with and she couldn’t — so she turned to Gillette.  Her trust means a lot to me,” explains Bridget Madich, the social media strategist who worked with Molly to share Braxton’s request far and wide. “When you leave Gillette’s hospital walls, you’re still an important member of our community. We’re committed to being advocates to our kids no matter what their need.”

Without further ado, meet Braxton’s brand new pen pals!

Meet Us Monday - Mary Matteson, Registered Nurse

Posted On: 11/02/2015

Editor’s Note: Congratulations to Mary on being named the recipient of March of Dimes Minnesota’s 2015 Nurse of the Year – Surgical Services.  

What is your position and role at Gillette? I have worked at Gillette Children's Specialty Healthcare as a registered nurse in the Surgery department for over 25 years. My current role is working as one of the Surgery department charge nurses. In this role I supervise and support nursing staff as we work together to care for our patients who are having surgery. Communication and coordination is a large part Meet Us Monday - Mary Matteson, Registered Nurseof my job. I communicate with the entire surgical team as we plan ahead for our patients before their procedure. We also work together each day to ensure an excellent experience for our patients.

Do you have a favorite Gillette story or memory?  I remember when I began working at Gillette one of my new co-workers told me “once you start working at Gillette this is where you will stay because it is such a rewarding experience to work with our patients and their families”. I think my co-worker was correct because I have spent the majority of my nursing career working here.

What do you like best about working at Gillette?  I have a neighbor whose child received care at Gillette and shared that not only did her child receive excellent care, but so did she! This comment made me think this is why I work at Gillette! I am so fortunate to work at a job where our focus is providing the best care for our patients and including their families in that care plan.

Do you have any children or pets?  I have two beautiful cats! Sophie and Maggie Marie are both eight years old. They are a true part of my family and provide a lot of entertainment and joy in my life.

If you could travel anywhere, where would you go? I would like to go to the Vancouver area. I have heard it is a very beautiful area with many fun things to do and to see.

What is one fun fact about you? I was fortunate to work at Valley Fair the first year it was open. I worked at the main gate as a ticket seller. It was such a fun summer job! As a college student it was a great way to meet people, make money, and be a part of the first year of the amusement park!

What are some of your hobbies outside of work? I enjoy being outside. I love walking, working in the garden, and reading or relaxing outside. In the winter months I like to read, cook and get outdoors when it is not too cold.

Why Those “Best Doctors” Lists Matter for Your Child

Posted On: 10/27/2015

We’ve all seen them on newsstands: magazines touting the “Top Doctors,” “Best Doctors,” and similar accolades for physicians in countless different specialties.  But what do they really mean?  And more importantly, do they matter?

Absolutely, says Steven Koop, M.D., medical director and orthopedic surgeon at Gillette Children’s Specialty Healthcare.  “Physicians included on top doctors lists are selected based on a peer-nomination process,” he explains. “Many publications do additional research into things like professional achievements and patient satisfaction.”

But that’s not to say that only ‘the best of the best’ are included on any given list. “Families shouldn’t be concerned if their child’s physician isn’t named on a top doctors list,” says Koop. “Any physician’s recognition should be seen as a reflection of an entire hospital’s expertise.”

With that in mind, we’re honored to announce the inclusion of Gillette physician in not one, but two recently-published lists.  Congratulations to the following doctors—and to ALL of the talented physicians, nurses and care providers who keep our patients moving forward.  

Minneapolis St. Paul Magazine’s Rising Stars List

Neurological Surgery
Debbie Song, M.D.

Timothy Feyma, M.D.
Nicole Williams Doonan, M.D.

Orthopedic Surgery
Tenner Guillaume, M.D.

Physical Medicine & Rehabilitation
Nanette Aldahondo, M.D.

Minnesota Monthly’s 2015 Best Doctors 

Developmental-Behavioral Pediatrics
Kim McConnell, M.D.

Hospice and Palliative Medicine
Scott Schwantes, M.D.

Timothy Feyma, M.D.
Beverly Wical, M.D.

Michael Healy, M.D.
Steven Koop, M.D.
Tom Novacheck, M.D.
Stephen Sundberg, M.D.


Physical Medicine & Rehabilitation
Mark Gormley, M.D.
Angela Sinner, D.O.
Marshall Taniguchi, M.D.
Marcie Ward, M.D.

Plastic & Reconstructive Surgery
Paul Lim, M.D.

Sleep Disorders
John Garcia, M.D.

David Vandersteen, M.D.

Support Kids Like Dalen During Dwarfism Awareness Month!

Posted On: 10/20/2015

By Christy Lawler, Dalen’s Mom

Did you know that October is Dwarfism Awareness Month? My family would love it if you wore green on October 25, which is International Dwarfism Awareness Day, to show your support. Keep reading to find out why!   

On July 8, 2014, my husband and I found out we were having twins. We were so thrilled and shocked! We had names picked out for them right away. Baby A was Dalen and Baby B was Christian. When I went in for my 30-week ultrasound, the doctor noticed Dalen’s arms and legs were a little shorter then Christian’s. At 32 weeks, Dalen’s arms and legs were still measuring short. Terms like “skeletal dysplasia” and “dwarfism” were thrown around. I was so confused and worried for Dalen.

Thankfully, both Dalen and Christian continued to grow and passed every ultrasound with flying colors! When I was 36 weeks along, I began having contractions. My doctor explained that I was in early labor and that he would be doing a C-section tonight. “It isn’t too early?” I asked. “They are going to be safe, right?”

Both babies were healthy and didn’t need any extra assistance. But as I nursed Dalen for the first time, I noticed his hands were shorter and chubbier while Christian’s were very long and gangly. The next day, Dalen had numerous X-rays done. We spoke with a genetic counselor, who said she was 90 percent sure he had achondroplasia, the most common form of dwarfism. His fingers, legs and arms were notably shorter then Christian’s, and his head shape was a bit bigger. She told us she couldn’t be 100 percent sure until a blood test confirmed it, but this wasn’t an emergency. We were released from the hospital with two healthy and happy babies.

At home, we soon noticed Dalen snored, and we could always hear him breathing harder than Christian. Our pediatrician suggested that Dalen do a sleep study—and to our surprise, we learned there was no sleep center in our hometown of Fargo, North Dakota. We were referred to Gillette Children’s Specialty Healthcare, more than four hours away.

Dalen was 5 weeks old when he had his first sleep study. My husband and I were very nervous and weren’t sure what to expect. When we got to Gillette, we were greeted with open arms. The nurses and staff were absolutely amazing. We couldn’t have asked for better treatment! Two hours into the sleep study, John Garcia, M.D., told us Dalen had severe sleep apnea. He had stopped breathing about 35 times an hour and needed to use a CPAP machine.

In April, we made our second trip to Gillette for another sleep study and an MRI to check Dalen’s spine and brain stem for any narrowing or compression. The second sleep study revealed he still had severe sleep apnea and had quit breathing about 17 times an hour. An order for an oxygen machine was sent to Fargo so we were able to get it when we got home. During the MRI, while Dalen was sedated, we were able to get a blood sample, which confirmed his diagnosis of achondroplasia.

A few hours after Dalen’s MRI, we learned that Dalen does have a narrowed brain stem that will most likely require surgery down the road.   

Our next trip to Gillette, for a third sleep study and a neurosurgery check-up, was in August. I asked if we could split the night to see how he would do for a portion of the night without any CPAP assistance. Gillette staff said they would wake us up later to put on the CPAP—but they never ended up needing to. Why, you ask? Because Dalen didn’t qualify for it! He no longer needed any breathing assistance while he slept. This time, he stopped breathing only about 2.6 times an hour. Anything fewer than 5 times an hour is considered “mild” and requires no treatment. We were ecstatic! Dalen absolutely hated having to wear oxygen equipment to sleep, and it was always a fight to get it on and make sure it stayed on.

This fall, we had a bit of a setback as Dalen began showing further symptoms of his narrowed brain stem. He had another MRI, which confirmed he will need surgery sooner than we initially expected. We anticipate scheduling his surgery in the coming weeks. We’re confident Dalen will overcome this latest challenge as he’s done countless times already in his young life.

Today, Dalen is pretty much rolling around to get where he needs to go, and he’s recently started doing a slow army crawl. Both boys are doing wonderfully and moving at their own pace. We have many people ask us about Dalen and we are never afraid to talk about dwarfism. We would rather somebody come and talk to us instead of pointing or staring. We want to spread awareness and knowledge.  

Editor’s note: Read the ABC News story about Dalen and Christian here.

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