Author Archives: Brady.Gervais

Woman to honor late grandson at Twin Cities Marathon

Team Superstars' Robyn Steinbrueck is running for her grandson, Rowan Peterson, who died March 2012. (Photo courtesy of Robyn Steinbrueck)

Team Superstars’ Robyn Steinbrueck is running the Medtronic Twin Cities Marathon for her grandson, Rowan Peterson (pictured), who died March 2012. (Photo courtesy of Robyn Steinbrueck)

This is the first in a regular series about Team Superstars runners who will participate in the Medtronic Twin Cities Marathon on Oct. 4 on behalf of Children’s inaugural charity running team. Learn more and join here.

Robyn Steinbrueck

What do you think of when you hear “Children’s Hospitals and Clinics of Minnesota”? To me, Children’s is a place that played a beautiful and integral part of my family’s life in March 2012.

It was a Sunday I will never forget. I was having my lunch when the phone rang. My daughter, Katie, was calling to tell me news no one wants to hear. My 21-month-old grandson, Rowan, had gone into cardiac arrest. After 35 minutes of the paramedics trying to revive him, they got his heart beating, and he was on his way to North Memorial Medical Center. After frantically driving to pick up his twin brothers, Josh and Holden, we learned that Rowan had been transferred to Children’s. I knew immediately that no matter the outcome, he would receive the best care.

As the day transpired, and we arrived at the hospital, we were hopeful but realistic. Being without oxygen or a heartbeat for that long could not be good. Our worst fears were realized when the doctors told us that indeed Rowan’s brain was badly damaged from the oxygen deprivation. The doctors and nurses were absolutely fabulous as they walked my daughter and her husband, Taylor, through the last day of Rowan’s life. They were treated with incredible compassion and respect as they made decisions that no young parents should ever have to make. As each family member came to say goodbye to Rowan, we were shown such love by the staff, especially the nurses. Their final gift to Rowan was a beautiful quilt that his body was wrapped in after he died. Even in death, the thoughtfulness of Children’s shined through. Although our family was only at Children’s for a little more than a day, the memory of their care will stay with me for a lifetime.

I began running in 2002, so after Rowan’s death, it was good therapy for me to hit the pavement. As the miles passed under my feet, I found great comfort and the “road was a good listener.” Knowing that I had increased my mileage as a way to deal with the grief and its aftermath, my brother encouraged me to run a half-marathon with him. I thought that there was no way I could do it, but I am very competitive, so I took him up on the offer. I ran two half-marathons that year, and I loved every minute of it!

Grief comes in waves, and it really hit me hard in late 2013, so I increased my running. Somewhere in all those miles, I decided that I wanted to run the Medtronic Twin Cities Marathon. Fast forward to October 2014, and as I was lining up in downtown Minneapolis, I looked up and saw Hennepin County Medical Center, the hospital where Rowan was born. Tears filled my eyes as I realized that I was actually doing this and that I had made it through this challenge. So on Oct. 5, I completed my first marathon! To say it was one of the best days of my life would be an understatement. The crowds, the course, the weather and my family all came together that day. I knew as soon as I crossed the finish line that I would do it again.

subscribe_blogOne of the most inspirational parts of the Twin Cities Marathon is the charity teams. Not only do they support each other through training and raise funds for their cause, but they are there for each other throughout the race. I knew that I had to be part of a team. When I heard about Team Superstars, there was no doubt in my mind that this was for me; what a great way to honor the memory of my grandson, Rowan, and to show support for Children’s.

So, my “Team Superstars” adventure begins. I am excited to raise funds and to be part of an awesome team. I look forward with great anticipation to Oct. 4, when I will run the Twin Cities Marathon as part of Team Superstars. I know that Rowan’s memory and spirit of Children’s will be with me the entire way.

Holy Angels athlete refuses to let ulcerative colitis knock him down

Scott Lohan, 17, a junior at Academy of Holy Angels, returned to the ice in November after battling ulcerative colitis. (Photos courtesy of the Lohan family)

Scott Lohan, 17, a junior at Academy of Holy Angels, returned to the ice in November after battling ulcerative colitis. (Photos courtesy of the Lohan family)

Brady Gervais

“Fall down seven times. Get up eight.”

Kids are resilient. Scott Lohan is proof.

For the past year and a half, he has been in and out of the hospital and endured lengthy procedures because of ulcerative colitis, a chronic illness in which the lining of the colon becomes ulcerated and inflamed. The combination of inflammation and ulceration causes stomach pain and frequent emptying of the colon.

It’s really painful and, for an active teenager, can be embarrassing. But it hasn’t stopped Scott, 17, from living fully.

“This experience has left me a more appreciative, stronger person,” Scott said. “Day-to-day activities are seen as a gift instead of just a task.”

He was a typical teenager on the honor roll, active in sports, and social when his health went into the toilet. The summer before his sophomore year, he slept all the time. That was the first sign something was off. While sleeping throughout summer break might be normal for some teenagers, it wasn’t for Scott.

Scott began the 2013 varsity football season as a starter for the Stars but wasn't playing much by the end of fall.

Scott began the 2013 varsity football season as a starter for the Stars but wasn’t playing much by the end of fall.

When varsity football began that fall at Academy of Holy Angels, Scott was a starter. Sixty days later, he was barely playing.

But his parents weren’t worried something was seriously wrong until Scott told his mom, Leslie, that he had blood in his stool.

“Mom, is this normal?” he said.

No way, his mom said.

His parents took him to the emergency department at Children’s – St. Paul, where he had a colonoscopy and endoscopy despite normal blood-test results.

He left four days later with an initial diagnosis of ulcerative proctitis – inflammation of the rectum. Despite being on medication for the following six weeks, Scott continued having diarrhea, weight loss, fatigue and bleeding. His care team at Minnesota Gastroenterology urged him to come back to Children’s, where he was admitted again.

subscribe_blogBecause of the bleeding, he was put on Remicade, a chemotherapy treatment that helps treat ulcerative colitis, the diagnosis he ultimately received, and other diseases. He also was prescribed steroids for another six weeks.

Scott’s parents were devastated by the diagnosis, worried their active child may never return to his “normal” life again. But Scott reassured his parents, “I guess I have to just keep grinding!”

He doesn’t lose well, his parents said.

The drugs worked for a few days. Scott went home for Christmas, but he continued to lose weight and experience severe pain. That didn’t stop him from playing hockey, though. A dedicated and determined athlete, he traveled with his parents to and from games so he could sleep. Scott would tell his parents that his medicine was working just so he could play. He wanted a normal life regardless of the disease.

In January, Scott landed back at Children’s. He received a Remicade booster, but the drug didn’t stand a chance. A few weeks later, a colonoscopy and endoscopy revealed that Scott’s colon was basically gone, Leslie said.

“I can’t see my kid decline anymore,” she told his care team.

Minnesota Gastroenterology referred the family to Pediatric Surgical Associates, where Dr. Bradley Linden met with the family to discuss a colectomy. When they left, they didn’t expect to hear back for a week. In just 48 hours, they learned Scott needed surgery immediately.

On March 17, 2014, Scott underwent an eight-hour surgery to remove his colon. He recovered for four days while learning about living with an ostomy bag before going home. Within 12 hours of being released, Scott was back at Children’s with lower-abdomen pain and needed surgery again to remove a blood clot that lodged in his pelvic cavity that caused his kidneys to stop functioning.

Scott's sisters wore ostomy bags in support of their brother.

Scott’s sisters wore ostomy bags in support of their brother.

“He was a hot mess,” Leslie said.

So was she. Her son was in extreme pain. “I had a few ‘Terms of Endearment’ moments,” she said.

When Scott went back home, he was still in hell. He experienced withdrawal effects from no longer being on pain medication. He was angry and had cramps and the shakes, Leslie said.

By summer, he was doing better. He lifted weights with his teammates. He ran. He returned to the ice.

“He made sure he was going to have a normal life, as normal a life he could have with that stupid bag,” Leslie said.

In July, he underwent another procedure for a J-pouch, an internal pouch formed of the small intestine. It stores stool when there isn’t a large intestine.

Scott wears No. 27 for the Stars.

Scott wears No. 27 for the Stars.

By October the bag was removed and J-pouch connected. Scott’s drive, combined with the care and encouragement of the health care team, miraculously put him back in a high school hockey game for the Stars on Nov. 11 after spending 55 days in the hospital in 2014. Thankfully, and unlike last year, he was able to spend the holidays being comfortable and at home.

“Truly by the grace of God, he’s getting through it,” Leslie said.

Brady Gervais is an annual giving officer for the foundation at Children’s Hospitals and Clinics of Minnesota.

Minnesota boy adopted from China born with ‘beautifully created, imperfect heart’

Tovin Kainz, 4, was born with tetralogy of Fallot, a congenital heart defect. (Photos by Kyleen Olson Photography)

Tovin Kainz, 4, was born with tetralogy of Fallot, a congenital heart defect. (Photos by Kyleen Olson Photography)

Brady Gervais

Tovin Kainz’s Chinese zodiac sign is a tiger, a sign of strength.

Born in China with a complicated congenital heart defect, strength is a trait he has demonstrated time and again. He was 3 before he was adopted and a medical team could start repairing his heart.

“Tovin has been extremely brave and courageous throughout his life’s journey; he hasn’t let his medical condition slow him down one bit. He continues to fight and never gives up!” his mom, Jennifer Kainz, of Tracy, Minn., said. “He has taught our family about being strong, both mentally and physically.”

Tovin wasn't operated on until he was adopted at age 3.

Tovin wasn’t operated on until he was adopted at age 3.

When Jason and Jennifer Kainz were preapproved to adopt Tovin, they were aware of his heart defect, tetralogy of Fallot. Unfazed by the diagnosis, they were determined to bring Tovin home to Minnesota and get him the care he needed.

“We went into the special-needs-adoption program knowing that the children on this list needed not only a family but also medical help,” Jennifer said. “Jason and I strongly believe that every child deserves a chance at life. Everyone has something medically wrong with them, but our medical conditions don’t define us.”

Whatever Tovin’s heart condition turned out to be, Jason and Jennifer knew that an amazing medical team was just more than two hours away from their home, waiting to figure out Tovin’s “beautifully created, imperfect heart,” she said. They trusted God, they said, and knew that the medical team would have the knowledge it needed to help Tovin survive this bump on the road of his life.

What Jason and Jennifer didn’t know was that Tovin’s heart condition was worse than originally expected. This sometimes happens when children with a medical condition are adopted outside of the United States, said Tovin’s cardiologist, Dr. Rodrigo Rios. The diagnosis ends up being better or worse than initially thought.

After arriving in the U.S., one of Tovin’s first stops was meeting Dr. Rios at Children’s Heart Clinic. There, tests revealed that Tovin’s heart was on the right (incorrect) side of his body, had L-transposition of the great vessels; pulmonary atresia; a ventricular septal defect; nonconfluent pulmonary arteries and a right aortic arch.

Tovin took his first assisted steps at Children’s after his first heart surgery.

Tovin took his first assisted steps at Children’s after his first heart surgery.

In other words, “he was quite sick,” Rios said. Tovin’s body was blue, a symptom of his heart disease.

A child with Tovin’s condition is frequently diagnosed prior to birth, and surgery to start repairing the heart usually is performed soon after birth, Rios said. Every surgery carries risk, and the optimal time to perform it is when the patient is healthiest and strongest.

Because Tovin was older and already had been living with his condition for three years, he wasn’t as healthy as he would have been at just a few months of age.

But Tovin is strong. He underwent his first surgery soon after arriving in the U.S. and quickly showed signs of major improvement, Rios said.

This past fall, Tovin, 4, underwent his second surgery and was back home recovering just a few days later. It’s anticipated Tovin will have another surgery when he’s older to fully repair his heart. For now, he sees Dr. Rios every six months for checkups.

Tovin lives in southwestern Minnesota with his family.

Tovin lives in southwestern Minnesota with his family.

Dr. Rios said it has been exciting to play a role in Tovin’s care because of the drastic improvement he has made.

“He’s a kid with such a tremendous personality that you just fall in love with him immediately,” Rios said.

Since Tovin arrived in Minnesota — two years ago this month — he has come a long way. When he was adopted, his development was delayed. Tovin wasn’t able to crawl, walk or verbally communicate with his family, Jennifer said.

He took his first assisted steps at Children’s after his first heart surgery, and he has made huge strides since with the help of physical and occupational therapy. Thanks to speech therapy, he has a full vocabulary today.

Tovin loves to be adventurous, farm with his uncle and grandpa and play with his tractors, Legos and trains, Jennifer said. He takes full advantage of living in rural Minnesota. He’s always on the go and defiantly doesn’t sit idly.

“Tovin will limit himself before his heart limits him,” Dr. Rios told Tovin’s parents.

subscribe_blogThe Kainz family has found ways to stay connected to Children’s outside of the hospital. In 2013, Tovin, his older sister, Addison, 6, and his parents donned superhero capes and participated in HeartBeat 5000. Jennifer hopes to run one of the Medtronic Twin Cities Marathon weekend events on behalf of Children’s in October, too.

Getting involved is their way of thanking Children’s for the care Tovin has received.

“We have so much respect for every staff member we’ve worked with at Children’s and are very thankful for the love that each team member has given to Tovin,” Jennifer said. “They’re some of his biggest cheerleaders on his road to becoming the active 4-year-old boy that he is meant to be.”

Tovin's family said he has made huge strides since coming to the U.S.

Tovin’s family said he has made huge strides since coming to the U.S.

Brady Gervais is an annual giving officer for the foundation at Children’s Hospitals and Clinics of Minnesota.

Q&A with Team Superstars coach Antonio Vega

Coach Antonio Vega of Zoom Performance will guide Team Superstars with an online training plan, weekly training tips and two group runs and presentations. (Photo courtesy of Antonio Vega)

Coach Antonio Vega of Zoom Performance will guide Team Superstars with an online training plan, weekly training tips and two group runs and presentations. (Photo courtesy of Antonio Vega)

“Anybody can be a runner. We were meant to move. We were meant to run. It’s the easiest sport.” — Bill Rodgers, four-time Boston Marathon champion

In 2015, you have the opportunity to move for kids by running on behalf of Children’s Team Superstars in one of the Medtronic Twin Cities Marathon weekend events and fundraising. Whether you’ve been considering your first race or have been logging miles for years, you can do it.

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RELATED: Add a Children’s event to your race calendar

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If you need further proof that you can do it, keep reading. Coach Antonio Vega of Zoom Performance will guide the team with an online training plan, weekly training tips and two group runs and presentations. He has a bachelor’s degree in kinesiology from the University of Minnesota. As a former member of Team USA Minnesota, he holds a 2-hour, 13-minute marathon personal record and a 61:54 half-marathon PR. We asked him a few questions about training, his philosophy on running and his own running career.

Q: Is it true? Can anyone run?

A: Absolutely, everyone can run. When I think about all of the great experiences and friends that I have made during my running career, I would not change that for the world. I think anyone who does not get out and run is missing out on such a great part of life.

subscribe_blogQ: I’m just getting started as a runner. Do you have a few tips?

A: The best thing any new runner can do is ease into his or her new running routine. It can take a good month for running to become enjoyable and something that you look forward to on a daily basis. Don’t be afraid to take walking breaks when you are first starting out, and keep the pace nice and easy and enjoy the sights and sounds of being outdoors while exercising. The beauty of running is that you are competing against yourself, so there is no need to worry about how fast you are running.

Q: How do you conquer fear of signing up for a race, whether it’s your first 5K or marathon

A: Being prepared for any race that you are doing is one way of conquering your fear of signing up for a race. Following a training plan or working with a running group is a great way to feel prepared before any competition. Also having a friend or a family member that will cheer you on at the race or will run with you will also help to minimize any fear that you might have about signing up for a new race distance.

Q: What should I expect training with Team Superstars and Coach Vega?

A: The training plans that I have put together for Team Superstars are meant to challenge athletes of all ability levels. Whether your goal is to finish your first marathon or run a PR in the 10-mile, there will be a plan to help you accomplish your goals. You can rest assured that all of the guess work that comes with training for any race has been decided for you. Every plan is meant to get you to the starting line ready to run your best race.

Q: What’s your trick for staying motivated to “go the extra mile”?

A: For me, getting out the door is always the hardest part about any run. Once I have my shoes on and I am out the door, I never turn around. I find that mixing my training up helps to keep me motivated, whether that is running with a friend, changing my running route or taking my dog out on a run with me. All of these things help me to stay motivated to continue to train.

I always tell myself you never regret going for a run, but I always regret not running.

Q: What is your coaching style?

A: I tend to be a very hands-on type of coach. I know how much time and work my athletes put into training, so I always become personally invested in their racing and training goals. When I know one of my athletes has a tough workout coming up or a big race, I am constantly checking their training plan to make sure they are well-rested going into their workout or race, and then I find myself eagerly waiting for them to update me in how the workout or race went.

Q: When you reflect on your running career, what are you most proud of?

A: The highlight of my running career would be winning the 2010 US Half Marathon Championship in Houston. Before running the Houston Half Marathon, Minnesota had experienced one of the worst winters that I can remember. I was unable to train outside during my build up to Houston. I ended up logging 120 miles a week for 12 weeks straight all on a treadmill. The day before the race was the first time that I had run outside in three months. Winning the Houston Half Marathon proved to me that when you put in the hard work day in and day out you can accomplish just about anything.

Q: What is your favorite distance and why?

A: Hands down my favorite race distance is the marathon; I love the amount of work and preparation that goes into training for 26.2 miles. Whatever your goal is, just finishing a marathon is always such a great accomplishment.

Add a Children’s event to your race calendar

The HeartBeat 5000 benefits Children’s cardiovascular program and caters to families, competitive runners aiming for a fast time and everyone in between.

HeartBeat 5000 benefits Children’s cardiovascular program and caters to families, competitive runners aiming for a fast time and everyone in between.

subscribe_blogNew year, new you?

Whether you’re planning your first 5-kilometer race or hoping for a personal record, you can achieve your goal while making a difference for kids when you participate in one of Children’s running events.

Run with heart. The annual HeartBeat 5000 benefits Children’s cardiovascular program. Held on June 27 this year, it caters to families, competitive runners aiming for a fast time and everyone in between.

Go apples for kids. Or is it bananas? The Pine Tree Apple Tennis Classic run is a 5K and 10K event that supports Children’s cancer research. Held this year on Aug. 9, it’s another family-friendly event that also offers a flat, fast course for runners.

Join Team Superstars. For the first time, Children’s will be an official charity partner of the Medtronic Twin Cities Marathon weekend in 2015. Go the extra mile by running in one of the weekend events and raising money for Children’s. Using a special identity code, you can register beginning Feb. 3 to run the marathon, 10-mile (limited number of entries will be released in late spring), 10K or 5K for Children’s. Individuals who commit to raising $750 (marathon and 10-mile) or $250 (10K and 5K) will receive an online training plan from Coach Antonio Vega, weekly training and fundraising tips, access to monthly training runs at Mill City Running in Minneapolis, a race singlet, a personal fundraising website and inspiration from our patients. Learn more at our kickoff party. RSVP today.

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RELATED: Q&A with Team Superstars coach Antonio Vega

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Walk the walk. Running not your thing? The Baby Steps 3K, our annual fundraising walk, is May 30. There’s food, kid-friendly activities and the opportunity to catch up with Children’s neonatal staff at the party. All proceeds benefit the neonatal program at Children’s, including the neonatal intensive care unit (NICU), infant care center (ICC) and special care nursery (SCN).

Top 10 apps for pain management

Mobile apps can be used to help distract children dealing with pain. (iStock photo)

Mobile apps can be used to help distract children dealing with pain. (iStock photo)

Stefan Friedrichsdorf, MD

Stefan Friedrichsdorf, MD

Stefan Friedrichsdorf, MD

State-of-the-art pain management in the 21st century demands that pharmacological management must be combined with supportive and integrative (nonpharmacological) therapies to manage a child’s pain. At Children’s, we are using physical methods (e.g. cuddle/hug, massage, comfort positioning, heat, cold, TENS), cognitive behavioral techniques (e.g. guided imagery, hypnosis, abdominal breathing, distraction, biofeedback), as well as acupressure and aromatherapy.

For “needle pokes” (vaccinations, blood draws, etc.), for instance, we expect that kids are sitting upright (use sucrose in the age group birth to 12 months), so we numb their skin with topical anesthesia (e.g. EMLA-patch, LMX 4 percent lidocaine patch, or J-tip) and use distraction such as bubble blowing or blowing a pin wheel. Alternatives can be applications on your smartphone or tablet.

My personal favorite technique remains teaching children in self-hypnosis. However, in addition, I’m increasingly using apps on my iPhone or iPad with patients. Here are my top apps for pain and symptom management in kids:

10. Real ChalkBoard: Drawing on a realistic chalkboard with different-color chalk — much more fun than it sounds. ($1.99)

9. Talking Tom CatThis is a cat that repeats everything you say in a funny voice. You then can record and share videos and send them by email, YouTube and Facebook. Kids really enjoy that they can make Tom the cat say funny stuff. (free)

8. Simply Being – Guided Meditation for Relaxation and PresenceProvides relaxation, stress relief and benefits of meditation without prior experience. It allows the child/teenager to choose from four meditation times and gives them the option to listen to the guided meditation with or without music or nature sounds. Kids also can listen to the music or nature sounds alone; more for older children and teenagers. (99 cents)

7. Drums! – A studio-quality drum kit in your pocket As the name implies, this is a drum kit. Great for kids with too much (or too little) energy. Rock on! (99 cents)

subscribe_blog6. Tesla Toy: “Tesla Toy” is a fun, interactive “particle toy.” When the fingers touch the screen, they generate what looks like a powerful electrical field that makes the thousands of particles react beautifully. 
Kids (and adults) often are mesmerized by this app for a long time. ($ 1.99)

5. Fruit NinjaA “juicy” action game with squishy, splatty and satisfying fruit carnage! (99 cents) 

4. Koi PondOne is gazing into a pond of crystal-clear water with fish, turtles and more. Kids run their fingers across the cool surface of the pond and water ripples away from their touch.
The koi fish, disturbed, dart away… only to quickly forget and swim close once more. (99 cents)

3. Easy-Bake Treats!This is a highly recommended app; it let’s children make, bake, decorate, eat and share virtual cakes, cupcakes, cookies, cake pops and pizza. They pick their mix, fill the pan with batter and water, mix it all together and slide the pan into the virtual oven to cook. Then they can add candles to their cakes and cupcakes, too! Candles can be lit and re-lit for even more fun! 
Once they’ve baked and decorated their treats, kids can show off and share their delicious virtual creations with family and friends via email or Facebook. Highly addictive – kids can spend a long time on this app. (free)

2. The Healing Buddies Comfort Kit“The Healing Buddies Comfort Kit” offers an interactive, virtual way for kids and teens at home, in a doctor’s office or in the hospital to learn and immediately benefit from self-care techniques to manage common symptoms like pain, worries, nausea, fatigue and trouble sleeping. 
The app contains several integrative medicine techniques adapted for use by children and teens that are quick and effective for symptom control so kids can get back to doing what they like to do – and need to do each day. The techniques included in this app are designed by leaders in the field of pediatric integrative medicine (physicians, nurses, psychologists and child life specialists) and have been tested for years in several leading children’s hospitals and clinics. (99 cents)

Disclaimer:

The creation of the mobile app has been a collaborative effort of my department at Children’s Hospitals and Clinics of Minnesota with Ridgeview Medical Center and DesignWise Medical.

1. Balloonimals Absolutely groovy; kids love it! This is my favorite app to distract a child in pain or discomfort. Beautifully rendered balloon animals spring to life when you blow into the microphone on your iPhone/iPad or swipe with your iPod Touch. Watch the balloon inflate and then give your phone a shake to start constructing your balloon animal. With each shake, your animal takes greater shape until… voila! Your balloon animal appears and is ready to play. Pet your “balloonimal” to see what tricks it can do. ($1.99)

Apps, which didn’t make the list but I still like a lot: “Art of Glow,” “Sand Garden,” “Build a Zoo,” “Naturespace,” “SkyView” and “Disney’s Small World”

Stefan Friedrichsdorf, MD, is medical director of the Kiran Stordalen and Horst Rechelbacher Pediatric Pain, Palliative and Integrative Medicine Clinic at Children’s – Minneapolis. This post originally appeared at NoNeedlessPain.org. Download the Children’s Hospitals and Clinics of Minnesota app.

Sleds, skis, snowboards and skates: Stay safe with these tips

Minnesota winters bring with them plenty of opportunity for fun in the snow and on the ice, especially when kids are home from school.

Follow these tips to help keep you and your family safe during the cold winter months.

Before venturing outside, be aware of conditions that may cause frostbite (freezing of skin exposed to cold temperatures) and hypothermia (dangerously low body temperature).

Wear the right clothes

Wind, moisture and contact with cold surfaces can all contribute to body-heat loss, so dressing appropriately is important to avoid frostbite or hypothermia.

  • Waterproof coat, snow pants and boots will help keep moisture out and warmth in.
  • Cover exposed skin as much as possible with gloves, a scarf and long socks, and be sure to wear a hat that covers your ears.
  • Dress in layers and avoid materials like cotton that soak up moisture.

Be sure an adult is nearby when kids are playing outside, and make sure everyone goes inside regularly to warm up.

Sledding

  • Never sled in an area where there is traffic.
  • Wear a ski or bike helmet. A light stocking cap can fit under most helmets while still fitting appropriately.
  • Sleds that you can steer tend to be safer than disks, flat or roll-up sleds or toboggans.
  • Choose hills free of trees, ponds, ice, fences, ditches and large bumps.
  • Take turns; wait for others to sled and get out of the way before following behind.
  • Always go feet-first down the hill.

subscribe_blogSkiing and snowboarding

  • Wear a helmet approved for skiing, goggles and other appropriate equipment such as wrist guards.
  • Go on hills appropriate for your skill level.
  • Remember skiing and snowboarding are sports; you should stretch to warm up your muscles beforehand, eat well and stay hydrated.

Skating

Choose to skate on groomed ice rinks like the ones you find at arenas or parks rather than lakes or ponds, when possible. If you do go out on open water, check with the Department of Natural Resources to make sure the ice is thick enough. No matter where you skate, follow these tips:

  • Wear a properly-fitting helmet and other safety gear to protect your head and joints from injury if you fall.
  • Make sure your skates fit right and are tightly laced.
  • If you skate outside, avoid ice with cracks, slush and darker areas of ice – these are all indicators that it’s not safe.

The Minnesota Department of Public Safety also has information on winter safety.

World AIDS Day: Getting to zero

Dec. 1 is World AIDS Day.

Fatumata, whose name has been changed, is a 15-year-old girl who lived in Eastern Africa all of her life before coming to Minnesota in 2010. She grew up in a refugee camp with her younger brother and sister and her parents. She had to take medicine every day, and sometimes she was sick. But mostly she liked to play with her friends and help her mother with the chores. Fatumata noticed that some of the people in the camp avoided her and her family, and she was not allowed to go to school with the other children. She didn’t know why.

Then one day, Fatumata’s father became ill and eventually passed away. Soon after, her mother became too sick to care for her and her siblings, and her uncle came to tell her that she would be leaving the camp to go and live with his family in the U.S. Fatumata cried because she did not want to leave her mother, but her mother told her that she would be able to grow and be healthy where she was going and that they would see each other again.

Q4_mighty_buttonSo Fatumata and her siblings came to Minnesota. It was cold and, at first, she didn’t understand what anyone was saying. Soon she was able to go to school for the first time, and she learned English, and she continued to take her medications and grow strong and healthy. Today, Fatumata knows why she takes medications. She knows the name of her disease and doesn’t fear her HIV. She has a dedicated medical team at Children’s who provide care and support to her and her family. Fatumata is looking forward to the day when she will be able to go to college and some day, have a healthy family of her own.

Dec. 1, 2014, marks the 26th anniversary of World AIDS Day. It’s an opportunity for us to come together to show support for people living with HIV and AIDS around the world and at home, to remember those who have died from this disease, and to commit to “getting to zero” in the fight against HIV: zero new infections and zero deaths from HIV and AIDS.

HIV today

Around the world, there are an estimated 34 million people living with HIV. About 3.3 million are children younger than 15. In addition, about 17.3 million children have lost one or both parents to AIDS and millions more have been affected by the epidemic. Every day, almost 7,000 people become infected with HIV and nearly 5,000 people die from AIDS. In 2011, 230,000 of those who lost their lives were children, according to UNICEF.

In the U.S., approximately 1.1 million people are living with HIV, and in Minnesota, just more than 7,500 of our neighbors, family members and friends are living with HIV and AIDS, according to the Minnesota Department of Health.

What is Children’s doing in the fight against HIV?

As the largest provider of care to HIV-infected children in Minnesota, we provide medical care to more than 100 children infected with HIV every year. Children come to us from all over Minnesota and the world. Many of the children in our care have been adopted from countries in Asia, Africa, Eastern Europe and the Caribbean. Many more are refugees and immigrants who may not be able to access treatment in their own countries. In addition to expert medical care, families can access specialized support services funded through the federal Ryan White CARE Act, including education, family case management and mental-health services.

What can you do?

1. Get tested, know your status. HIV testing is recommended as a routine part of medical care. Talk to your provider about testing.

2. Get connected, get support. If you are living with HIV, find out about the programs and services offered in your area to help you stay healthy and support you and your family in living with your disease.

3. Educate yourself about HIV. Learn how to prevent HIV infection and how to keep yourself safe. Can you answer these questions about HIV?

True or false?

1. HIV is a virus and AIDS is a bacteria.

2. HIV infection can be spread by hugging.

3. Some people have HIV and do not know it

4. There is treatment for HIV.

5. People who have HIV can give birth to healthy babies.

Quiz answers

1. HIV (human immunodeficiency virus) is a virus and AIDS (Acquired Immune Deficiency Syndrome) is the disease caused by the HIV virus. AIDS makes it hard for people to fight off other kinds of infections and illnesses and can make people sick.

2. False. You cannot get HIV from hugging or playing with other people with HIV. HIV can only be spread by direct contact with blood and some other body fluids through sex, sharing needles, or breastfeeding.

3. True. About 15 percent of people infected with HIV do not know they are infected with the virus. That’s why getting tested is so important.

4. True. We have great treatments and medications for people living with HIV that enable them to stay healthy and live a long time. We don’t have a cure yet, but scientists are hard at work on it.

5. True. When people living with HIV take their medications and see their doctors regularly, they have more than a 98 percent chance of having a baby born without HIV.

Father of cystic fibrosis patient plans concert, silent auction for Children’s

Edison Hopper was born with cystic fibrosis. (Amy Best / Amy Colleen Photography)

Edison Hopper was born with cystic fibrosis. (Amy Best / Amy Colleen Photography)

If you asked Charlie Hopper if the birth of his son was hard, you’d be off. Way off.

“To say it was difficult would be inaccurate,” Hopper said. “Any time you’re confronted with something your child has that could shorten his life shifts your perspective. We’ve done our best to take his diagnosis in stride, and the help of the team at Children’s has made that possible.”

A week after Edison Hopper was born last year, he was diagnosed with cystic fibrosis (CF). He has been treated at Children’s Hospitals and Clinics of Minnesota ever since. It was a diagnosis that will forever impact the Hopper family. Parents Charlie and Becky have not only accepted it but also pledged to help other kids like Edison and all kids cared for by Children’s.

CF is a life-threatening genetic disease that primarily affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus. It clogs the lungs and leads to life-threatening lung infections, as well as obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.

After Becky became pregnant with Edison, she learned she was a CF carrier. As a result, Charlie was tested and also found to be a carrier. When both parents are carriers, children have a 1-in-4 chance of having CF. It wasn’t until after Edison was born that they learned his diagnosis.

“Emotionally, it was difficult after Edison was born, but we got to a point where everything leveled out, and it got easier and easier. We don’t know any different,” Hopper said.

Edison receives daily treatment. He takes 40,000 units of enzymes with every meal to help him maintain body weight, Hopper said. He uses a nebulizer twice a day and wears a vest during treatment to help loosen the mucus in his lungs.

He visits Children’s, specifically Dr. Brooke Moore at Children’s Respiratory and Critical Care Specialists (CRCCS) every three months for checkups. He does an annual visit with his whole CF team (doctor, nurse, dietitian, social worker, and respiratory therapist). To date, he has been healthy and hasn’t once been hospitalized.

Since Edison was born, there have been many promising developments for people with his diagnosis. Life expectancy on average for a person with cystic fibrosis is just over 37 years. Kids born today with it should live into their 50s, on average, Hopper has learned.

Q4_mighty_button“Part of why CF has advanced is because of places like Children’s,” he said.

Charlie and Becky are expecting their second child next year. Because they’re both carriers of the defective gene, their next child could have cystic fibrosis, too.

“We obviously don’t want our next child to have CF,” Hopper said. “But in the event our unborn son has CF, we’ll know how to manage it.”

Hopper wants to raise $15,000 yet this year for Children’s in honor of his son and the thousands of other kids for whom Children’s cares.

“Everything that Children’s represents is something bigger than us as individuals,” Hopper said. “They go above and beyond.”

To help raise funds for Children’s, Hopper has organized a benefit concert, featuring national touring band Blitzen Trapper at the Fine Line Music Café on Dec. 12 presented by 89.3 The Current and McTerry Music. Local standouts Farewell Milwaukee, Bigtree Bonsai and Old Desert Road will also perform. Tickets are $25 in advance, $30 at the door and $50 for VIP (balcony access and $20 bar tab); doors open for the concert at 7 p.m. Tickets are selling fast and can be purchased here.

There will be a pre-event silent auction sponsored by IPR directly next door to the Fine Line at 300 N. First Ave. from 4-7 p.m., featuring live acoustic music by local musicians David and Zach Young (Down and Above, Going to the Sun) and Ray Smart (The Attley Project, Meridian Incident). Admission to that event is $10 and includes free food and drinks, as well as two complimentary raffle tickets for prizes to be given away after the concert at the Fine Line (need not be present to win). Tickets can be purchased here. People with tickets to the concert will be admitted free. If you cannot attend either event but want to support the cause, give today.

New mom reflects on her premature birth

Kirsten DesMarais was born at 28 weeks in 1988, weighing 2 pounds, 14 ounces.

Kirsten DesMarais was born at 28 weeks in 1988, weighing 2 pounds, 14 ounces.

Her pregnancy  and now, motherhood  gives Kirsten DesMarais perspective on what her parents experienced when she was born prematurely.

Kirsten DesMarais and husband Phillip welcomed daughter Lena Caroline on Nov. 5, 10 days beyond her due date and after 20 hours of labor.

Kirsten DesMarais and husband Phillip welcomed daughter Lena Caroline on Nov. 5, 10 days beyond her due date and after 20 hours of labor.

DesMarais, 26, was born at 28 weeks at Abbott Northwestern Hospital in Minneapolis. Her early arrival came as a surprise. Her mom was at the hospital for testing when a nurse told her she wouldn’t be leaving until she gave birth. The next day, DesMarais arrived, weighing 2 pounds, 14 ounces.

In an interview before the recent birth of her daughter, Lena Caroline, DesMarais said, “Even though I’ve been pregnant for over eight months, it’s still unreal that there’s going to be a baby to come out of this. It gives me a greater appreciation for what my parents and other parents went through having a baby so early.”

DesMarais and her husband, Phillip, welcomed Lena Caroline on Nov. 5, 10 days beyond her due date and after 20 hours of labor. Lena weighed approximately 7 pounds and was 20 inches long.

“I felt like we had extra time to mentally and physically prepare,” DesMarais said. “I couldn’t imagine having a baby three months early and not having any of that preparation for your first child.”

She also was able to hold and feed her daughter right away  experiences for which her mom had to wait. Becoming a mom is the “coolest, most-overwhelming thing ever; overwhelming in a good way,” DesMarais said.

Q4_mighty_button“Everyone tells you to sleep when they sleep, but all you want to do is look at them. You can see them changing right in front of you,” she said. “I feel like I can see her growing every time I look at her.”

For a long time, DesMarais wanted to share her story to show others that babies who are born early still can thrive, as she has. Becoming a mom seemed like the right time.

“As young as I could understand, any time anyone talked about a baby they would talk about how I was born so little and that I was so lucky to get the care I did,” DesMarais said, adding that it was a miracle she survived being born so early 26 years ago.

Thanks to medical advances, new state-of-the-art facilities like The Mother Baby Center and philanthropy, outcomes for premature babies continue to improve since DesMarais was born.

For a long time, DesMarais wanted to share her story to show others that babies who are born early still can thrive.

For a long time, DesMarais wanted to share her story to show others that babies who are born early still can thrive.

November is Prematurity Awareness Month. Learn more.