families? - Gillette Children's Specialty Healthcare
families? - Gillette Children's Specialty Healthcare
families? - Gillette Children's Specialty Healthcare
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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