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3 Teen Focus<br />

4 Making the Move<br />

to Adulthood<br />

7 Just Ask Us<br />

Becky Nelson<br />

Transition Social Worker<br />

“Transition to adulthood<br />

is a process, not a<br />

one-time event.”<br />

Photo inset: To read about<br />

Mike Ewaldt, go to Page 5.<br />

FALL 2007<br />

VOLUME 15<br />

NUMBER 2<br />

Sending your children into the world — whether to a first group home or to a freshman<br />

year in college — can be difficult. Specialists at <strong>Gillette</strong> Lifetime <strong>Specialty</strong> <strong>Healthcare</strong> can<br />

help you and your teenager navigate the adult world.<br />

By the second year of high school, many<br />

young people are beginning to think<br />

about the future. They’re asking questions<br />

and exploring colleges, trade schools or jobs.<br />

Young people who have disabilities are asking<br />

the same questions. In addition, they<br />

face a number of other concerns.<br />

Making the transition to adulthood<br />

can be difficult for anyone.<br />

Preparing for the responsibilities<br />

of adulthood can be especially<br />

challenging for young people who<br />

have disabilities — and for their<br />

<strong>families</strong>. “When young people leave<br />

home, it can be a time of anxiety for <strong>families</strong>,”<br />

says Robert Wagner, M.D., medical director for<br />

<strong>Gillette</strong> Lifetime. “It might be a time of homesickness<br />

on the part of a child or one of loss for<br />

parents. Whatever the situation, it’s a time of<br />

letting go.”<br />

Of course, the degree to which parents can let<br />

go depends on their child’s level of disability.<br />

“Some parents are letting go of the care of young<br />

adults who are in a position to make their own<br />

decisions,” Wagner explains. But if a young person<br />

will depend on others for lifelong care, the<br />

Mike Ewaldt<br />

issues are substantially magnified. “Parents<br />

whose children have complex medical needs<br />

often remain guardians and stay in active parent<br />

roles longer than those whose children have<br />

fewer needs,” he adds.<br />

Taming the Future<br />

The good news is that <strong>families</strong><br />

don’t have to make the transition<br />

to adulthood all at once, and<br />

they don’t have to do it alone.<br />

<strong>Gillette</strong> has developed an<br />

approach to transition that’s proving<br />

helpful to many of our patients<br />

and their <strong>families</strong>.<br />

Becky Nelson, a transition social worker at<br />

<strong>Gillette</strong> Lifetime, helps patients and their <strong>families</strong><br />

learn more about adult health care, independent<br />

and supportive living, careers, education and<br />

financial resources. She also counsels young<br />

adults and <strong>families</strong> about their concerns. “It’s<br />

never too soon to begin talking about the transition<br />

to adulthood,” Nelson says. Indeed, when<br />

<strong>Gillette</strong> patients are 14, our doctors, nurses,<br />

therapists, psychologists and social workers<br />

begin such conversations.<br />

It’s Never Too Early: continued on Page 6


2<br />

That’s the theme of a new campaign to raise<br />

community awareness of <strong>Gillette</strong> Children’s<br />

<strong>Specialty</strong> <strong>Healthcare</strong> and the patients we serve.<br />

You’ve probably seen the ads on Twin Cities<br />

newscasts, CNN and MSNBC. By showing <strong>Gillette</strong><br />

patients participating in everyday activities, the<br />

ads focus on changing the way people view<br />

children who have disabilities. In addition, the<br />

campaign recognizes children for their achievements,<br />

efforts, enthusiasm and spirit.<br />

Kathryn Wardrop, <strong>Gillette</strong>’s vice president of<br />

strategic planning, explains that other hospitals<br />

create awareness by saying they’re trying to cure<br />

a disease. “What we do at <strong>Gillette</strong> is different,<br />

given the nature of the patients we see,” she<br />

says. “We might not ‘cure’ disabilities, but we<br />

believe we can cure the way people sometimes<br />

look at kids who have disabilities. We hope to<br />

change the way kids with disabilities see the<br />

world — and the way the world sees them.”<br />

In addition to television spots, print ads<br />

appeared in Mpls.St.Paul and Minnesota Monthly<br />

magazines. <strong>Gillette</strong> also is a featured sponsor on<br />

Minnesota Public Radio. In addition, the ads will<br />

appear during the last two weeks of November<br />

and throughout December in Concourse G of<br />

the Minneapolis/St. Paul International Airport.<br />

Gabriel deGrood Bendt (GdB) advertising agency<br />

created the ads. <strong>Gillette</strong> also developed a Web<br />

site (www.curepity.org) to accompany the campaign.<br />

Visit the site to view the ads, learn more<br />

about <strong>Gillette</strong> Children’s Foundation, and find<br />

out how to get involved.<br />

WHAT’S HAPPENING<br />

for <strong>families</strong>?<br />

PLAN NOW<br />

TO ATTEND!<br />

<strong>Gillette</strong>’s Family-Focused Workshop —<br />

Parents as Partners<br />

Parents as Partners is a family-focused workshop designed for parents,<br />

caregivers and others involved in the care and education of children and<br />

teens who have special needs. Workshop leaders will provide an overview<br />

of cerebral palsy and related concerns. Parents of children who have<br />

special needs will participate in a panel discussion. The evening event<br />

will be held Nov. 1 at Alltel Center, 1 Civic Center Plaza, in Mankato, Minn.<br />

Parents also might find the professional conference interesting and helpful.<br />

It will feature topics that affect the health, education, development<br />

and lifetime care of children who have cerebral palsy and related conditions.<br />

The daylong conference will be held Nov. 2 at Alltel Center, 1 Civic Center<br />

Plaza, in Mankato, Minn.<br />

For more information, go to www.gillettechildrens.com. Under Medical<br />

Education, click on Children Who Have Special Needs. For registration<br />

information, contact Amy Schall at 651-229-1721 or 800-719-4040<br />

(toll-free).<br />

Interested in Trying Sled Hockey?<br />

Sled hockey allows participants who have physical disabilities to play ice<br />

hockey. The Minnesota Sled Hockey Association season begins Sunday,<br />

Nov. 11, and runs through March 9. Games are held at Richfield Ice Arena<br />

in Richfield, Minn. Eligible players must be 5 or older and have physical or<br />

cognitive disabilities. You can sign up for beginning, intermediate and<br />

advanced levels. For information or to register, call 612-558-8387 or go<br />

online to www.mnsledhockey.org.<br />

<strong>Gillette</strong> to Offer Advanced Imaging Services<br />

<strong>Gillette</strong> Children’s <strong>Specialty</strong> <strong>Healthcare</strong> will begin offering advanced imaging<br />

services in the spring of 2008. Our Advanced Imaging Center will be<br />

located on the third floor, just below our St. Paul Clinic. We’ll offer magnetic<br />

resonance imaging (MRI) exams and computed tomography (CT or<br />

CAT), ultrasound/sonography and fluoroscopy scans.<br />

<strong>Gillette</strong> Patients Benefit From<br />

Muscular Dystrophy Association Partnership<br />

The Minneapolis district of the Muscular Dystrophy Association (MDA)<br />

recently designated <strong>Gillette</strong>’s Neuromuscular Clinic as an MDA-sponsored<br />

site. The partnership benefits patients by providing MDA funding for<br />

approved services that insurance might not cover.


Officers of the Hastings High School National Honor Society<br />

(NHS) organized yet another successful walk-a-thon during<br />

the 2006-07 school year. Over the past 24 years, the<br />

event has raised more than $50,000 to benefit <strong>Gillette</strong> Children’s<br />

<strong>Specialty</strong> <strong>Healthcare</strong>.<br />

Community Spirit<br />

Nick Holzemer, Jena Peine, Rachel Ward, and Ryann Berens led<br />

the event, during which participants walked five miles from<br />

Hastings High School, through downtown Hastings, and back to<br />

school beside the Mississippi River. The first walk-a-thon, in 1983,<br />

raised $500 in pledges. This year, the group raised a record $6,200.<br />

Plans for the May 2008 event are already underway.<br />

“We encouraged students to get involved with us,” says Ward.<br />

“Kids from different interest groups united for a common cause.”<br />

Getting to Know <strong>Gillette</strong><br />

Following the walk-a-thon, all of the participants came to <strong>Gillette</strong><br />

for a tour and to present their donation. “I was fascinated by the<br />

Center for Gait and Motion Analysis and the prosthetics lab,” says<br />

Holzemer. “It made our efforts mean much more when we saw<br />

where the money would go.”<br />

While in Washington, D.C., for Family Advocacy Day, <strong>Gillette</strong> staff and<br />

patients visited national landmarks, such as the U.S. Supreme Court. From<br />

left: Tiffany Horvath; Jana Looby; Mabel Looby; Brennan Horvath (standing);<br />

Margaret Perryman; Dan Looby; Cheyenne Horvath; Tami Horvath; Joe<br />

Horvath; Joey Horvath; and Molly Snyder, <strong>Gillette</strong> Public Relations.<br />

Ryann Berens and Jena Peine<br />

accepted a plaque on behalf<br />

of Hastings High School<br />

National Honor Society. The<br />

plaque, which features artwork<br />

by a <strong>Gillette</strong> patient,<br />

thanks the students for their<br />

ongoing support.<br />

TEEN FOCUS<br />

Berens agrees. “It really hit home to see a young girl from<br />

Farmington who was at <strong>Gillette</strong> because she was injured,” she<br />

says. “She was coping so well, and she was so hopeful. We focus<br />

so much on the trauma, but the recovery is amazing.”<br />

Peine, who plans to study orthopaedics, has a personal connection<br />

with <strong>Gillette</strong>. She says the tour was especially meaningful for<br />

her. “My uncle spent time at <strong>Gillette</strong> in the ’50s because he had<br />

polio,” she explains. “He still comes back to <strong>Gillette</strong> to get his<br />

braces adjusted. He was so happy when he heard that the group<br />

was raising money for <strong>Gillette</strong>.”<br />

The group’s unrestricted gift allows <strong>Gillette</strong> to use the funds to<br />

assist with critical needs. Past funds have benefited the Family<br />

Resource Center, Nursing Triage, and language and translation<br />

services.<br />

<strong>Gillette</strong> Families Speak Out for<br />

Children’s Health Care<br />

In June, two <strong>Gillette</strong> patients and their <strong>families</strong> joined Margaret<br />

Perryman, <strong>Gillette</strong> chief executive officer, in Washington, D.C., to take<br />

part in Family Advocacy Day. Mabel Looby, 6, and Joey Horvath, 6,<br />

traveled from their homes in Great Falls, Mont., to encourage members<br />

of Congress to support health care for children. In Washington,<br />

the <strong>families</strong> met with Max Baucus and Jon Tester, Montana senators,<br />

and Denny Rehberg, Montana representative.<br />

“I always feel humbled when I hear <strong>families</strong> talk about the difference<br />

<strong>Gillette</strong> makes in their lives,” says Perryman. “And I’m grateful when<br />

our patients and <strong>families</strong> advocate for <strong>Gillette</strong>. When a family takes<br />

the time to support children’s health care, it increases the credibility<br />

and impact of our message. There’s simply no better way to communicate<br />

the value of specialized services than to hear about it from<br />

patients and their <strong>families</strong>.”<br />

3


4<br />

Sara Bartz<br />

Sara Bartz, 29, enjoys listening to music, reading<br />

and writing poetry. In 2006, she graduated from<br />

Normandale Community College, where she’s<br />

now employed in the Academic Support Center.<br />

Bartz, who has cerebral palsy, received pediatric<br />

care at <strong>Gillette</strong> Children’s <strong>Specialty</strong> <strong>Healthcare</strong>,<br />

then moved to <strong>Gillette</strong> Lifetime <strong>Specialty</strong> <strong>Healthcare</strong><br />

when it opened in 2001. She offers some sound<br />

advice for teens who are thinking about their futures.<br />

When I was 14, I was focused on getting through<br />

school. I began thinking about careers later in high<br />

school. After I graduated, I attended a college in<br />

Minneapolis. I was raring to go, but I found out I<br />

wasn’t really prepared. In high school, I had accommodations<br />

as part of my individualized educational plan<br />

(IEP). In college it was completely different. I lasted for<br />

one semester.<br />

Following that, I took a course at Courage Center to<br />

learn independent-living skills. I then worked for several<br />

years, at Anderson Open School in Minneapolis, before<br />

enrolling at Normandale Community College.<br />

Now I live in a group home in Minneapolis, and I’m on a<br />

waiting list for an accessible apartment. I live a block away<br />

from the light rail and I’m on a bus line. I use a power<br />

wheelchair to get around the city streets.<br />

<strong>Gillette</strong> Guides<br />

Make Your Move: A Transition Guide for Teens is<br />

a <strong>Gillette</strong> guide designed for teens who will be<br />

planning for greater independence. We offer<br />

this transition tool to patients during their first<br />

Making the Move to Adultho<br />

It’s really important to be<br />

organized. I put my work clothes<br />

out at night, so I’m ready when<br />

the bus comes. Metro Mobility<br />

will wait for five minutes and<br />

then leave. If you use Metro<br />

Mobility, you need to provide<br />

the drivers with a two-hour<br />

window. They often pick up<br />

and drop off other people<br />

along the route. I have to get<br />

to work by 9:00 a.m., so I have<br />

them pick me up by 7:00 a.m.<br />

In a pinch, you can call an<br />

accessible taxi cab company.<br />

But it costs more.<br />

In college, I worked with<br />

people in the campus disability<br />

office to document<br />

that I needed note takers.<br />

I provided my note takers<br />

with carbon paper, so<br />

they could give me a<br />

copy right after class.<br />

I also tape-recorded<br />

lectures. That way, I<br />

didn’t miss anything.<br />

Thoughts From P<br />

Here’s some of what Sara Bartz learned over the years.<br />

R E S O U R C E S T O H E L P W I T H T H E<br />

clinic visit following their 14th birthday. We’re<br />

also developing The Journey Continues, a<br />

<strong>Gillette</strong> guide for <strong>families</strong> of young people<br />

with more complex cognitive and medical<br />

disabilities.<br />

You will need to learn to be<br />

assertive with your doctors, as well<br />

as with the staff in your group homes.<br />

When I first moved, I was considering<br />

several group home locations. There<br />

was an opening in Eden Prairie, but<br />

there was no bus line. I wouldn’t have<br />

been able to get around easily, so I said<br />

no. In the end, I was the one who had<br />

to live with the decision.<br />

Take care of your health. Write down<br />

any changes in your health, so you<br />

remember to discuss them with your<br />

doctor. Watch your weight, and exercise<br />

so you can do your transfers and get<br />

around more easily. If you do range-ofmotion<br />

exercises, tape one of your<br />

therapy sessions with your physical<br />

therapist. That way, the staff at your<br />

group home, or your family, can help<br />

you do them correctly.<br />

Before I came to <strong>Gillette</strong> Lifetime,<br />

I had some difficulty finding doctors<br />

who understood my condition. <strong>Gillette</strong><br />

Lifetime specialists understand the<br />

health-care needs of people with disabilities,<br />

and they can help you find a<br />

primary-care doctor who understands<br />

your needs.<br />

For more information about the transition to<br />

adulthood, or to arrange for a copy of our transition<br />

guide, contact Becky Nelson, <strong>Gillette</strong>’s<br />

transition social worker, at 651-229-3926.


od<br />

eople Who’ve Been There<br />

Mike Ewaldt, 25, loves listening to country and Christian music.<br />

He enjoys going to the theater and traveling with his family. He’s adept<br />

at using a computer to do research and purchase event tickets. Ewaldt<br />

has cerebral palsy, the result of encephalitis when he was an infant. He<br />

lives with his parents and Amy, a dog he got from animal rescue. Ewaldt<br />

is a bright young man, but at times he’s unable to talk. His mother, Dawn<br />

Tanner, shared his story.<br />

I’d suggest generating a list of your<br />

child’s strengths, so that when you begin<br />

looking for programs or schools, you can<br />

decide if they’re a good fit for your child.<br />

I also recommend that parents talk with<br />

their children before they make any<br />

decisions affecting them.<br />

Mike grew up when there weren’t many<br />

informational programs or resources<br />

about the transition to adulthood. We<br />

learned by doing.<br />

Mike is in an adult day and vocational<br />

program three days a week. He packages<br />

greeting cards, refurbishes remote controls<br />

for Comcast, and shreds paper for use as<br />

animal bedding. He loves animals, and it’s<br />

important for Mike to know that his work<br />

has a purpose. He likes his work and is<br />

proud of what he’s doing. Initially, Mike<br />

attended the program five days a week,<br />

but the fast pace and tight schedule simply<br />

didn’t work for him.<br />

We follow Mike’s lead on housing. He<br />

has friends who live in group homes, but<br />

he says living in one isn’t right for him.<br />

Someone has to care for him, and we<br />

decided it would be us. I was fortunate<br />

enough to be able to quit my job. Now,<br />

Mike can do more of the things he enjoys.<br />

He can take time getting ready in the<br />

mornings. He can listen to music or read<br />

books during the day. And he can go grocery<br />

shopping when the stores are quiet.<br />

That way, he can pick out his own food.<br />

When Mike became an adult, we began<br />

going to <strong>Gillette</strong> Lifetime. Moving away<br />

from the presence of children to an adultfocused<br />

environment was really helpful.<br />

The people at <strong>Gillette</strong> Lifetime acknowledge<br />

the fact that Mike is an adult and<br />

that he’s the person seeking care. They<br />

direct questions and comments to him.<br />

Even so, Mike recently told me that he<br />

sometimes needs more information<br />

about his medical experiences. Not long<br />

ago, I made an appointment to have<br />

Mike’s shower chair modified. During the<br />

appointment, the people at <strong>Gillette</strong> were<br />

fabulous, but in retrospect, I realized I had<br />

left Mike out of the process. A few days<br />

T R A N S I T I O N T O A D U L T H O O D<br />

Visit Our Transition Clinic<br />

Young people who are moving from pediatric to adult health care<br />

can make an appointment at our Transition Clinic. Jennifer Wilhelmy,<br />

a certified nurse practitioner, leads the clinic, which meets on Friday<br />

mornings at <strong>Gillette</strong>’s St. Paul Clinic. Becky Nelson, <strong>Gillette</strong>’s transition<br />

social worker, is available to follow up with <strong>families</strong> participating in<br />

the clinic. For more information, call Wilhelmy at 651-634-1936.<br />

Mike<br />

Ewaldt<br />

Mike Ewaldt enjoys a Mother’s Day<br />

picnic with his brother, Sean Ewaldt,<br />

and sister, Niki McCauley.<br />

later, we got a call saying his chair was<br />

ready. Mike said, “Don’t worry about it.<br />

They can keep it.” I thought Mike needed<br />

the chair for his health and safety. But I<br />

hadn’t asked Mike what he thought.<br />

At times, if something is new or scary,<br />

Mike might act younger than his years.<br />

He might need time to warm up to someone<br />

or to process what’s happening. At<br />

other times, he’s a 25-year-old man. It<br />

takes a moment for people to know<br />

which person they’re addressing. People<br />

sometimes present things the wrong way.<br />

But we’ve found it’s always OK to say, “I<br />

made a mistake. Let’s try something else.”<br />

When people do that, Mike embraces it.<br />

He says, “They honored me.”<br />

Thinking About Living Independently?<br />

If you’re thinking about living independently, <strong>Gillette</strong> Lifetime can help.<br />

Our occupational therapists offer independent-living evaluations to young<br />

adults moving from their family homes to apartments or college dorms.<br />

We also use the evaluations to help people identify and strengthen their<br />

independent-living skills. For information, call Nancy Mitchell, occupational<br />

therapist, at 651-634-1924.<br />

5


6<br />

FOCUS ON<br />

STAFF & HOSPITAL<br />

CARE CLOSE TO HOME!<br />

Maple Grove to Open in 2008<br />

<strong>Gillette</strong> Children’s <strong>Specialty</strong> <strong>Healthcare</strong><br />

plans to open a new site in Maple<br />

Grove, Minn., in January 2008. The<br />

7,500-square-foot facility, at 9550<br />

Upland Lane North, will be located<br />

across the street from the new Maple<br />

Grove hospital. “Adding a northwest<br />

location allows us to work more<br />

closely with the home, school and<br />

community-based providers in that<br />

area,” says Judy Miller, manager,<br />

Rehabilitation Therapies.<br />

The site will provide assistive technology<br />

and rehabilitation therapy services.<br />

For <strong>families</strong> and patients living<br />

in the area, that means convenient<br />

access to services they frequently<br />

need. The therapy space will include<br />

a gym and kitchen. Plans are to<br />

create a therapy playground in the<br />

summer of 2008. Parking will be<br />

free, just outside the door.<br />

Convenient Access to Care<br />

in Burnsville<br />

If you live in or near the south metro<br />

area, you might consider scheduling<br />

your child’s next appointment at the<br />

<strong>Gillette</strong> Children’s <strong>Specialty</strong> <strong>Healthcare</strong><br />

Burnsville Clinic, located at 305 E.<br />

Nicollet Blvd., in Burnsville, Minn.<br />

We offer assistive technology, rehabilitation<br />

therapy, nutrition, radiology<br />

and other services, in addition to<br />

physician appointments. Families<br />

also can access our Spasticity<br />

Evaluation Clinic, Deformational<br />

Plagiocephaly and Torticollis Clinic,<br />

Feeding Clinic and First Seizure<br />

Clinic. Our clinic therapy spaces<br />

include a gym, pool, kitchen and<br />

playground. Parking is free, just<br />

outside the door. For information or<br />

to make an appointment, call<br />

952-223-3400 or 651-290-8707.<br />

Welcome!<br />

Galen Breningstall, M.D., pediatric<br />

neurologist, will join <strong>Gillette</strong><br />

Children’s <strong>Specialty</strong> <strong>Healthcare</strong> on<br />

Nov. 12.<br />

It’s Never Too Early: continued from Page 1<br />

Nelson emphasizes that transition doesn’t<br />

mean transfer of care. “When we talk about<br />

transition, we’re addressing the whole world<br />

of adulthood that young people are moving<br />

into,” she says. “Adult health care is one<br />

component of the process.”<br />

What You Need to Know<br />

As children become adults, <strong>families</strong> must<br />

address several issues. The first concerns<br />

legal decision-making. Regardless of someone’s<br />

cognitive function, at age 18 all young<br />

people become legal adults who can make<br />

legal decisions. Some young people will be<br />

able to do that. Other <strong>families</strong> might need to<br />

establish an alternate legal decision-making<br />

process, such as guardianship.<br />

“At 18, many benefits and services are no<br />

longer available,” Nelson explains. “Families<br />

might need to provide additional documentation<br />

to maintain similar services or benefits.”<br />

At <strong>Gillette</strong>, we provide patients and <strong>families</strong><br />

with the information they need to plan and<br />

apply for continuing services. “Our goal is to<br />

help young people be as independent as<br />

possible, so they can navigate the adult<br />

world,” she adds.<br />

Advocacy is another area of concern. “Young<br />

people who will be making their own decisions<br />

need to mature into the role,” Wagner<br />

explains. “Many teens, for example, don’t<br />

know their own medical history. They might<br />

remember that they had surgery on their<br />

legs, but they don’t know when or why it<br />

was done.”<br />

At <strong>Gillette</strong>, we help young people begin<br />

building skills and taking a more active role<br />

so that, if they’re able, they can eventually<br />

manage their own lives and care. “We do so<br />

gradually,” says Nelson. “We might, for<br />

example, talk about what medicines they<br />

take and why. Or we might suggest that<br />

teenagers begin making their own healthcare<br />

appointments.”<br />

Many people who have disabilities also have<br />

concerns about their educational, work training,<br />

and housing options after high school.<br />

“If someone wants to go to college or vocational<br />

school,” says Nelson, “<strong>Gillette</strong> can provide<br />

the testing and documentation needed<br />

to request accommodations.” She adds that<br />

<strong>families</strong> aren’t always prepared for long waiting<br />

lists at group homes. “It can take anywhere<br />

from three months to three years to<br />

get into a group home,” says Nelson. “Some<br />

facilities are more difficult than others to get<br />

into. It’s best to visit several, so you can plan<br />

alternatives.”<br />

Staying Healthy<br />

As people grow into their adult bodies,<br />

finding appropriate medical care is vitally<br />

important. The joints of adults who use<br />

wheelchairs often show signs of overuse,<br />

which can make it difficult to do transfers<br />

and propel wheelchairs. In addition, young<br />

adults need regular physical exams. “Young<br />

people whose medical conditions are complex,<br />

or who remain cognitively young, might<br />

be unable to begin making their own decisions<br />

or participating fully in their own care,”<br />

Wagner explains. “However, they still need<br />

adult care as their bodies age.”<br />

At <strong>Gillette</strong> Lifetime, we understand the special<br />

concerns of people who are aging with<br />

disabilities. “We can help ensure that people<br />

have the care and information they need to<br />

stay healthy throughout their lives,” says<br />

Nelson. “We also have the resources teens<br />

and <strong>families</strong> need to begin thinking about —<br />

and planning for — the future. We all need<br />

to remember that transition is a process, not<br />

a one-time event.”<br />

“We invite teenagers and their <strong>families</strong> to<br />

come to <strong>Gillette</strong> Lifetime and have a look<br />

around,” says Wagner. “We also suggest<br />

making an appointment to talk with our<br />

social workers about what happens when<br />

teenagers turn 18.”<br />

The <strong>Gillette</strong> Lifetime <strong>Specialty</strong> <strong>Healthcare</strong> St. Paul –<br />

Phalen Clinic specializes in treating older teens and<br />

adults with childhood-onset disabilities. The clinic is<br />

located at 435 Phalen Blvd. in St. Paul. For information,<br />

call 651-636-9443 or 800-578-4266 (toll-free).


Our certified nurse practitioners (from left):<br />

Denise Walz, Jean Stansbury, Jennifer Wilhelmy,<br />

Jennifer Maytum, Patty Erickson, Leslie Larson,<br />

Cheryl Shell and Sarah Gutknecht.<br />

Not pictured: Terri Schultz,<br />

Amanda Seeley and Laura Stresow<br />

Jean Stansbury: A certified nurse practitioner<br />

is a registered nurse who has a<br />

master’s or doctoral degree in nursing.<br />

That combination of practical skills and<br />

advanced education qualifies us to diagnose<br />

and manage many health conditions.<br />

We order diagnostic and laboratory tests.<br />

In addition, we prescribe medications,<br />

physical therapy and other rehabilitation<br />

treatments. We also do a lot of teaching<br />

and follow-up care, and we help patients<br />

to coordinate care with various health-care<br />

specialists.<br />

Suzanne Constantini: Our 11 nurse<br />

practitioners work in subspecialties, such as<br />

orthopaedics or neurology. (See complete<br />

listing, below.) They work closely with<br />

physicians, supplementing their care but<br />

not replacing it. They often see patients on<br />

return visits. Although nurse practitioners<br />

work independently, they can, and do, refer<br />

to <strong>Gillette</strong>’s physicians when something<br />

falls outside their scope of practice.<br />

Craniofacial Surgery<br />

Cheryl Shell<br />

Neurology<br />

Jennifer Maytum<br />

Denise Walz<br />

Neurosurgery<br />

Teresa Schultz<br />

Amanda Seeley<br />

Orthopaedics<br />

Sarah Gutknecht<br />

Pediatrics<br />

Jean Stansbury<br />

Suzanne Constantini<br />

St. Paul Clinic manager<br />

?<br />

We often see nurse practitioners when we come to <strong>Gillette</strong>.<br />

Do they have special training? What is their role?<br />

<strong>Gillette</strong>’s Certified Nurse Practitioners<br />

Pediatric Rehabilitation<br />

Medicine<br />

Leslie Larson<br />

Jean Stansbury<br />

Laura Stresow (Duluth and<br />

Mobile Outreach Clinic)<br />

Physical Medicine and<br />

Rehabilitation<br />

Jennifer Wilhelmy<br />

Rheumatology<br />

Patty Erickson<br />

Stansbury: We often have more time to<br />

go beyond a patient’s medical needs and<br />

look at their overall situation. That allows<br />

us to treat patients in a holistic way. Many<br />

patients, for example, find that massage<br />

therapy is helpful in managing muscle tone.<br />

However, massage therapists need to use<br />

care when doing massage near a baclofen<br />

pump catheter. That’s just one example of<br />

ways we can advise therapists about safety<br />

concerns.<br />

Jennifer Maytum: Having nurse practitioners<br />

on staff has allowed <strong>Gillette</strong> to<br />

expand services. Our First Seizure Clinic<br />

and Minor Neurotrauma Clinic, for example,<br />

are possible because we’re available to<br />

organize and staff them.<br />

Denise Walz: In the First Seizure Clinic,<br />

we evaluate children who’ve had first<br />

seizures. We also educate <strong>families</strong> about<br />

the nature of seizures and make referrals, if<br />

necessary. We’re often able to see patients<br />

much sooner than physicians could. That’s<br />

important for <strong>families</strong> faced with new<br />

medical conditions.<br />

Constantini: Nurse practitioners see<br />

patients multiple times, and they get to<br />

know patients and <strong>families</strong> well. They add<br />

a personal touch and act as an important<br />

bridge among <strong>families</strong>, physicians and<br />

other health-care providers.<br />

At <strong>Gillette</strong>, certified nurse<br />

practitioners lead the following<br />

clinics.<br />

■ Deformational Plagiocephaly<br />

and Torticollis Clinic<br />

We evaluate infants who have<br />

problems with neck movements<br />

and/or have an abnormal head<br />

shape. Cheryl Shell, certified nurse<br />

practitioner, leads the clinic. For<br />

information, call 651-602-3277<br />

or 800-719-4040 (toll-free).<br />

■ First Seizure Clinic<br />

We evaluate, diagnose and treat<br />

children who’ve experienced first<br />

seizures. For information, call<br />

Nursing Triage at 651-229-3890.<br />

Ask for Jennifer Maytum or Denise<br />

Walz, certified nurse practitioners.<br />

■ Minor Neurotrauma Clinic<br />

We provide follow-up services to<br />

people who’ve experienced minor<br />

injuries to the brain or spine. We<br />

also help determine whether children<br />

and teens can return safely to<br />

school or sports after experiencing<br />

a concussion. For information, call<br />

Nursing Triage at 651-229-3890.<br />

Ask to speak to Leslie Larson,<br />

Teresa Schultz or Amanda Seeley,<br />

neurotrauma nurse practitioners.<br />

■ Transition Clinic<br />

We evaluate young people who are<br />

moving from pediatric to adult<br />

health care. Jennifer Wilhelmy, a<br />

certified nurse practitioner, leads<br />

the clinic, which meets at <strong>Gillette</strong><br />

Children’s <strong>Specialty</strong> <strong>Healthcare</strong> –<br />

St. Paul Clinic. For more information,<br />

call Wilhelmy at 651-634-1936.<br />

7


Frequently Called Numbers<br />

Main number 651-291-2848<br />

–Burnsville Clinic 952-223-3400<br />

–Duluth Clinic 218-728-6160<br />

–Minnetonka Clinic 952-936-0977<br />

–St. Paul Clinic 651-312-3113<br />

Adult Inpatient Unit (4-East) 651-726-2840<br />

Assistive Technology 651-229-3800<br />

Child and Family Services 651-229-3855<br />

Family Resource Center<br />

Pediatric Medical Trauma Unit<br />

651-229-3938<br />

(4-South) 651-229-3825<br />

Postsurgical Nursing Unit (4-West) 651-229-3820<br />

Triage nurse 651-229-3890<br />

Prior Authorization<br />

Rehabilitation and Neurology Unit<br />

651-229-2148<br />

(4-North) 651-726-2613<br />

Rehabilitation Therapies 651-229-3900<br />

To schedule an appointment 651-290-8707<br />

<strong>Gillette</strong> Lifetime <strong>Specialty</strong> <strong>Healthcare</strong><br />

Adult Clinic 651-636-9443<br />

Toll-free numbers<br />

Main hospital and clinics 800-719-4040<br />

Burnsville Clinic 866-881-7386<br />

Duluth Clinic 800-903-7111<br />

Minnetonka Clinic 800-277-1250<br />

<strong>Gillette</strong> Lifetime Adult Clinic 800-578-4266<br />

FALL 2007<br />

VOLUME 15<br />

NUMBER 2<br />

Family Focus provides support and information for<br />

<strong>families</strong> of patients at <strong>Gillette</strong> Children’s <strong>Specialty</strong><br />

<strong>Healthcare</strong>, a regional health center for children,<br />

teens and young adults who have disabilities.<br />

Editorial Advisory Committee:<br />

DeEtta Barnhardt, Social Worker<br />

Adrienne Barnwell, Ph.D., Psychologist<br />

Amy Coad, Child Life Therapist<br />

Laurie Porter, Coordinator, Family Resource Center<br />

Stephanie Zigan, Physical Therapist<br />

Gail Jankowski, Janet Kuziej and Debbie<br />

Ramacher, Parents<br />

Publications Staff:<br />

Lonnie Bell, Editor/Writer<br />

Marilynn Reid, Graphic Designer<br />

Anna Bittner, Photographer<br />

Paul DeMarchi, Photographer<br />

Lynne Kuechle, Writer<br />

If you’re a parent interested in joining our editorial<br />

advisory committee, please call Lonnie Bell at<br />

651-229-1772.<br />

If you don’t<br />

want to receive<br />

Family Focus . . .<br />

Call 651-325-2320<br />

to remove your<br />

name from our list.<br />

When calling, leave:<br />

■ Patient’s name<br />

■ Phone number<br />

Friends of <strong>Gillette</strong> Benefit<br />

Event Set for Saturday, Dec. 15<br />

Come celebrate the season of giving while you support <strong>Gillette</strong> Children’s<br />

<strong>Specialty</strong> <strong>Healthcare</strong>. Join the Friends of <strong>Gillette</strong> at the 23rd annual A Special<br />

Evening for Special Children. The gala begins at 5:30 p.m. at Saint Paul RiverCentre,<br />

with hors d’oeuvres catered by Wildside Caterers and a silent auction. An<br />

8:00 p.m. performance of The Sound of Music follows at Ordway Center for the<br />

Performing Arts.<br />

For ticket and reservation information, go to www.gillettechildrens.org. Under<br />

Events, click on Foundation/CMN Events/Friends of <strong>Gillette</strong> Benefit Event. You also<br />

can contact Judy Johnson at 651-229-1740 or jljohnson@gillettechildrens.com.<br />

200 University Avenue East<br />

St. Paul, Minnesota 55101<br />

www.gillettechildrens.org<br />

NONPROFIT ORG<br />

U.S. POSTAGE<br />

P A I D<br />

WINSTED MN<br />

PERMIT NO. 100

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