Inside Gillette Blog

Support Kids Like Dalen During Dwarfism Awareness Month!

Posted On: 10/20/2015

By Christy Lawler, Dalen’s Mom

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

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

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

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

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

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

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

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

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

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

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

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

Helpless to Hopeful: Strategies to Overcome Bullying

Posted On: 10/16/2015

When 8-year-old Allison started coming home from school visibly upset and without her usual energy, her parents felt certain something was bothering her. They soon learned they were right: Two girls in Allison’s class had recently begun teasing her.  At first, Allison’s parents felt powerless. They knew they’d need to equip her with strategies to cope with, and ultimately overcome, the bullying. But how?

A new school year can also be when many children experience bullying for the very first time. Unfortunately, kids who have complex medical needs can become easy victims of peers’ teasing and taunting. But any child — even typically developing kids — can struggle with bullying.Helpless to Hopeful: Strategies to Overcome Bullying

When does teasing cross the line to full-blown bullying?  “Although all teasing has an element that can be hurtful,” explains Dianne Burd, manager of Child and Family Services at Gillette Children’s Specialty Healthcare, “there’s a continuum that goes from gentle teasing to bullying.  What may seem gentle to one child — knocking hats off or unkind words — may feel like bullying to a more vulnerable individual.”

Bullying is more calculated, intense and persistent than teasing.  In some cases, it can be a learned behavior—from TV shows, computer games, or family members.  If the teasing isn’t too intense, these strategies may help.  But if it persists or worsens, parents shouldn’t hesitate to intervene.

  • Take charge:  Your child can’t control the teasers, but can control his response.  Advise your child not to engage with the teasers—and if possible, walk away. Ignoring teasing may make it worse for a while, but when bullies see that teasing no longer works, it will no longer be “fun.”
  • Stay calm. Kids who tease want to see that they’re bothering your child.  Encourage her to take some deep breaths or count to 10.
  • Reject the teasing:  Just because someone says something in a loud voice doesn’t mean your child has to accept it.  Tell your child to think of the words as rubber balls that bounce off him, or to imagine he has a shield that deflects mean words.
  • Say “So?”: “So?” is a way of saying that teasing doesn’t matter.  If your child sends the message that she isn’t scared or bothered, the bully might back off.
  • Stay in a group: Bullies tend to pick on kids who are alone.  Encourage your child to stay away from kids who tease, if possible, and to find people who share his interests. Having even one good, supportive friend can help. 
  • Play it safe:  Emphasize that it’s okay to ask for help.  If your child has told the teaser to stop, and the teasing continues or worsens, or if it becomes physical, she should tell an adult right away.

Parents never want to see their children struggle with teasing or bullying.  Instead of feeling helpless, use the issue as an opportunity to start a classroom conversation about friendship and kindness. A new book for elementary-aged students, called “It’s Okay to Ask,” is an ideal tool to begin a positive discussion that will empower you and your child.  And now is an ideal time — October is National Bullying Prevention Month.

Meet Us Monday - Annie Tchao, Clinical Pharmacist

Posted On: 10/16/2015

Editor’s Note: Gillette celebrates Annie Tchao, and all our pharmacy team members, during National Pharmacy Week October 18-24!

What is your position and role at Gillette Children’s Specialty Healthcare? I have been an evening clinical pharmacist at Gillette for almost two years.  My daily activities include entering medication Meet Us Monday - Annie Tchao, Clinical Pharmacistorders, checking products, providing clinical consults, interviewing sleep clinic patients, and providing discharge teaching.  I am also involved with several small committees to help improve the discharge medication process, pharmacy workflow and pharmacy policies. 

Do you have a favorite Gillette memory? My favorite memory is when a patient’s mom told me how appreciative she was to have a pharmacist console them on the medications they would need once they left Gillette.  She has never seen this service offered and was very grateful for the work I do.

Why did you choose to become a pharmacist? I wanted a career that involves both science and math while allowing me to work in the healthcare field; therefore, being a pharmacist was a great fit.  I can use math to calculate the dose and science to understand how drugs affect the body. 

What do you like best about being a pharmacist? The best thing about being a pharmacist is the variety of pharmacy fields you can work at.  In the past, I have had the privilege to work at retail, ambulatory, mail order, home infusion, and inpatient pharmacy.  I would like to continue exploring other pharmacy fields to improve patient care in the future.

Do you have any children or pets?  I have one baby girl on the way, due in mid-November.  My husband and I are excited to be first-time parents.  I do not have any pets since I am afraid of anything hairy and on four legs.

If you could travel anywhere, where would you go? It would be Japan and Korea because I love sushi, Korean food and their culture.

Suzi’s Voice Emerges Through Innovative Technology

Posted On: 10/15/2015

By Candice Gangl, Occupational Therapist, and Dana Anderson, Speech-Language Pathologist

Communication is an essence of life:  to interact with others, to make our wants and needs known, to share ideas with others. Communication comes in many forms — verbally, gestures or facial expressions. However, for individuals who are unable to use these forms of communication due to various speech/language, motor, or other cognitive impairments, some form of augmentative and alternative communication (AAC) may be required.  

One Name, Multiple Options
Just as communication comes in many forms, so does AAC — from sign language to simple pictures and photos, to a voice output device in which the user activates a button and the device generates a recorded voice or digitized speech.  Eye gaze technology is one of many ways to access an AAC system. If an individual is unable to access a device or switch due to motor limitations, eye gaze may be an option. Eye gaze allows the user to make different selections on a screen of a communication device using their eyes.  By either dwelling or blinking on that particular picture, symbol, or word, the device will then speak their selection.

Our Approach to Eye Gaze Technology
At Gillette Children’s Specialty Healthcare, a team of professionals, including speech-language pathologists, occupational therapists, and seating specialists work together to help patients successfully use an eye gaze communication system. Speech language pathologists establish the most effective language program, while occupational therapists determine the most appropriate way for the individual to access the communication system.  Finally, seating specialists ensure the device is able to be mounted and/or utilized across different environments for the patient’s wheelchair.

Suzi’s Eye Gaze Story
Here is an example of a great communication evaluation:  The team met with Gillette patient “Suzi” and determined she was a very smart, funny, and social 10-year-old.  Because she has cerebral palsy, controlled movements and talking were challenging. It was clear from the first meeting that Suzi had a lot to say, but we needed to figure out how to allow her to communicate well.  First, the speech therapist looked at Suzi’s language and vocabulary to ensure the device gave her all the options she needed to communicate, but was not too difficult.  Then, the occupational therapist needed to ensure that Suzi could activate the device.  After testing many options, all of which proved ineffective for Suzi, she trialed an eye gaze device.  

Suzi’s Voice Emerges
On Suzi’s first trial, she played games and chased animals and targets with her eyes.  She was a natural. Her success almost instantly told us that Suzi could be successful with the device. When she interrupted her mom to ask the therapist, “How old are you?” her mom and the therapist were thrilled, as this was the first time Suzi was able to communicate with her own words.  While the process felt daunting at points, the end result was something that will never be forgotten. Because of this technology and the work from the team, Suzi is now able to communicate with those around her without waiting for assistance from anyone else.  

Creativity and Collaboration: Custom Seating for Children who have Spinal Muscular Atrophy

Posted On: 10/08/2015

By Brian Reilly, seating practitioner

In the Assistive Technology Department at Gillette Children’s Specialty Healthcare, customized seating system components are designed and often redesigned. They are built, rebuilt, modified and fitted onto patients’ wheelchairs as their needs change over time. Our process is customized for the unique needs of each individual child.

At Gillette, seating practitioners like myself collaborate with a wide variety of individuals — including physicians, nurses, therapists, orthotists, group home caregivers, teachers, insurers, durable medical equipment (DME) vendors, families, and of course patients themselves. Our goal is to provide functionally appropriate adaptive equipment that meets our patients’ individual, family, community and care team needs.

This holistic, collaborative, patient-centered and creative approach is unique to Gillette, and the outcomes we see here are frequently quite remarkable and beneficial to others around our region, country, and even world. Gillette provides everything we need for these highly customized projects: quality materials and tools, state of the art facilities and equipment, experienced specialists, and the time and training to meet our patients’ standards for excellence.

Spinal muscular atrophy, for instance, is among the many complex conditions Gillette specializes in treating. Effective treatment of this degenerative neuromuscular condition requires a great deal of teamwork, which brings to mind some inspiring patients we’ve worked with over the years.

Sophia is one of the first patients that comes to mind. She first drove a power wheelchair at just 2 years old!  Incorporating ideas from her parents, school, Gillette therapists and countless others, we were able to create additional age-appropriate (and fun!) activities for Sophia to enjoy with her power wheelchair. For example, we worked with Sophia’s mother to find new and creative ways for Sophia to access her computer, control her fingers and even amplify her voice. From drawing with sidewalk chalk to adaptive skiing and ballet, there are many things Sophia can do with a little creativity and adaptation.

Mary Kate, who happens to be friends with Sophia, has experienced similar changes and evolution of her powered mobility systems over the years. Mary Kate’s mom, a physical therapist herself, has guided the care team with great passion and gentleness, helping Mary Kate to master driving, enjoy graceful adaptive dance performances, participate in 4H, and work with animals on her family’s farm.

Collaborating with families like these, and the many other Gillette professionals involved, is very rewarding. Health care delivery at its finest, I’d say. All of our families say Gillette rocks!  Our job is to make sure nothing stops our patients from enjoying their favorite things and being all they can be.

Pictures (from top): Mary Kate and Sophia enjoying a day at the mall above, Sophia with her sisters and custom fiber optic finger drive controls.

Gillette Joins Global Celebration of People Who Have Cerebral Palsy

Posted On: 10/07/2015

When Tommy Collison, a boy in rural Ireland, was diagnosed with cerebral palsy (CP) at 18 months old, his mom became an expert on the condition. After devouring books and articles about the topic, she concluded: If Tommy ever needed surgery, she would bring him to Gillette Children’s Specialty Healthcare.

Tommy’s mom wasn’t alone. In the past decade, patients have traveled to Gillette in St. Paul, MN from 20 countries to receive CP care. And, today, they join us in celebrating World Cerebral Palsy Day. In more than 50 nations, people who have CP, along with their communities, are working to ensure they have the same rights, access and opportunities as everyone else. At Gillette, we join this movement by supporting our patients no matter where in the world they call home.

When international families travel to Gillette for care, they receive help with far more than coordinating appointments. Our social workers and child life specialists assist with travel and lodging arrangements, and make sure children feel comfortable before surgery.  Families can also feel confident that they’re not alone in seeking out Gillette from abroad. Each year, dozens of medical professionals from around the globe visit to learn from our experts.

Eight years after his initial diagnosis, Tommy Collison did have surgery—in 2004, 2010 and 2012. He came to Gillette for all three procedures. Now, he studies journalism at New York University, and he’s even contributed a blog post to Gillette! “My life today is thanks to the staff at Gillette Children's Specialty Healthcare,” Tommy says. He’s one of the many patients we celebrate today.

Meet Us Monday - Joyce Trost, Manager of Research Administration

Posted On: 10/05/2015

What is your position and role at Gillette Children’s Specialty Healthcare? I am the Manager of Research Administration. I oversee all aspects of the research process including administrative, financial and scientific. You might say I’m the person who—along with my team—opens doors for research at Gillette, making the process run smoothly for our doctors, clinical scientists, and patient families who choose to participate.   

Meet Us Monday - Joyce Trost, Manager of Research AdministrationDo you have a favorite Gillette story or memory? Over the past 24 years I have accumulated many memories. It’s hard to pick a favorite but the everyday moments really shine through. I have seen successes and failures, cried and laughed with families and co-workers. I have celebrated with families when their child has walked for the first time, been able to carry their violin up on stage to play without having to use a walker, and actually been able to run for the first time after surgery.

In my current role, I don’t get as much patient contact and I miss that. But I know that the work I do now is still helping in a broader sense (the balcony view) as we work on the research trying to figure out the best way to provide care for the kids seen at Gillette.

What do you like best about working at Gillette? I love creating and developing – something I get to do a lot of in my role as a manager. I am proud to have helped grow research at Gillette to where it is today. I have a great team, and get to work with people from across the organization to provide opportunities for families to participate in research and to help figure out how to optimize outcomes for our patients.

Do you have any children or pets? My husband and I live on a hobby farm down by Cannon Falls with 14 grass fed cattle, which we raise and sell, a big garden and an orchard where we raise vegetables, berries and fruit trees. We have four children ages 13, 16, 17 and 20 and a rescue dog.

If you could travel anywhere, where would you go? My husband and I would love to travel to Italy and enjoy all of the great fresh foods and sights!

What is one fun fact about you? My training was as a physical therapist. I have worked at Gillette in several different areas include Rehab, the Center for Gait and Motion Analysis (where I became passionate about research and the process of discovery), and then in the Research Administration Department. I am currently working on my PhD in Rehabilitation Science looking at the impact of fatigue on the electrical activity of the muscle in boys who have Duchenne muscular dystrophy.

Fall, Fun and Safety — Tips Every Parent Should Know

Posted On: 10/01/2015

The air feels crisp, geese fly south and leaves turn bright hues of orange, red and gold.  Besides the start of a new school year, fall brings much-anticipated activities for children.  By following some simple safety guidelines, parents can make sure kids’ favorite fall traditions are a fun and safe experience for the whole family.

Pumpkin Carving
Children’s second-most-loved Halloween tradition (behind trick-or-treating, of course!) is creating a spooky jack-o-lantern to light up the night.  To prevent hand injuries, be sure to carve in a dry and well-lit area. Any moisture, including those slimy pumpkin innards, can cause slipping that might lead to injuries.  Leave the carving to adults—kids can help by drawing a pattern on the pumpkin and clean out the inside pulp and seeds.  And consider purchasing a pumpkin carving kit.  They include a special saw that isn’t sharp enough to cause a serious cut. Lastly, pick up a flameless, battery-operated candle to light up your jack-o-lantern. No flame means no risk of fire.

Whether a haunted hayride or an apple orchard activity, hayrides are a favorite experience for kids of all ages.  Take care when loading and unloading, making sure the hayride is at a complete stop.  Hold on to children and railings at all times, as the bumpy ride can easily bounce them off their seat.  Whether the hayride is pulled by a tractor or horse, it’s always a good idea to keep a safe distance away.

Corn Mazes
While fun, corn mazes can quickly become scary for young children—especially if they’re left alone.  Always accompany children into the maze and make sure your group knows to stick together.  Make sure, too, that the maze isn’t too close to parking lots or roads.  Be mindful of uneven walking surfaces, or fallen corn stalks, that could cause trips or falls. And remember that rain can result in muddy—and therefore, slippery—surfaces.

For Summer Research Intern, Helping Kids is Personal

Posted On: 09/29/2015

When 23-year-old Uyen Truong noticed a call-out for summer research interns at Gillette Children’s Specialty Healthcare this past spring, she felt compelled to apply. “Working with kids is my passion,” says Uyen. “And I have a special connection with Gillette.”  

Uyen has been a Gillette patient for as long as she can remember.  She has a genetic brittle bone disease called osteopetrosis, which means her bones contain too much calcium and easily fracture.  “I’ve had multiple breaks treated at Gillette,” she says. Uyen has continued to benefit from Gillette’s services into adulthood — most recently, for adaptive technology to help her succeed in medical school at the University of Minnesota, starting this fall.

Uyen Finds Her Calling
Uyen’s internship at Gillette merged her passion for helping children with her scientific background. She also wanted to experience firsthand how physicians integrate research into their practice. “Clinical research is people-oriented,” explains Uyen. “I wanted to pay it forward by helping others the same way I have been helped my whole life.”

As part of the program, Uyen and her fellow research interns collaborated with Gillette mentors — MDs and PhDs — on ongoing research projects. Specific topics varied, but all related to Gillette’s core mission: to provide outstanding care to children with often rare and complex medical conditions.

“Our interns are typically medical school students or students planning to enter another health care field,” says Meghan Munger, research coordinator at Gillette. “We want to cultivate their interest in research and encourage them to incorporate evidence-based medicine into their future careers.”

Making an Impact through Research
Uyen’s research is focused on casting in children following a femoral or pelvic osteotomy, both major orthopedic surgeries that help realign bones in the femur or hips.  She and her physician mentor, Walter Truong, M.D. (no relation to Uyen) hope to identify the ideal type of cast after complex hip surgeries.  The ideal cast would be easy to take care of yet still help patients experience less pain — and therefore, require less pain medication — after surgery.

The project holds personal significance for Uyen, as it stands to impact children who, like her, have experienced surgeries on their bones and joints. She hopes her work, which will continue for at least another year, will help guide future patient care.

“I understand what it’s like to be a patient and know that being in pain is difficult,” says Uyen. “I want to be someone who helps people feel better, helps them accomplish the things they hope to do.”  

Click here to learn more about Gillette’s summer research internship program.

Photo caption: Uyen is pictured with her Gillette mentors, clinical scientist Susan Novotny and Walter Truong, M.D.

Jonathan’s Story: Thriving with Hydrocephalus

Posted On: 09/22/2015

By Jennifer Bulthuis, Jonathan’s mom

Jonathan was diagnosed with hydrocephalus when he was six months old. We knew something was wrong because Jonathan cried and screamed anytime we tried to lay him down.  At six months old, he could only sleep in his crib for eight minutes without waking up screaming and needing to be held. 

Finding out that Jonathan had a life-long brain condition, requiring brain surgery, was a shock and difficult to comprehend. For months, we concentrated on his medical situation, making sure the shunt was working and meeting with numerous specialist to learn as much as we could about what was going on inside this tiny body. Then, it hit us like a ton of bricks….. this was forever. We needed to know more than just the medical side of Jonathan’s hydrocephalus and we felt a need to educate ourselves on how to help Jonathan live with his condition. I asked Jonathan’s pediatrician, Dr. Lutz, for help and asked him to recommend a neurosurgeon who would take the time to talk to us, be honest and direct, and talk in terms that we could understand. He suggested Michael Partington, M.D. at Gillette Specialty Healthcare. 

I’ll never forget our first appointment with Dr. Partington. Our 4:30pm consultation turned into a ninety minute conversation, including answers to ALL the questions on our very long list! Over the past few years, Dr. Partington has patiently and thoroughly answered all our questions about how to live, as a family, with hydrocephalus. He’s helped us learn how to talk to other parents about hydrocephalus, plan for play dates, safely play sports, talk to the school and Jonathan’s teachers, tips for traveling, and SO much more!

Today, Jonathan is six years old and attends full day kindergarten. He goes to the library with his class, plays in the gym, eats in the cafeteria, and runs with his friends on the playground. Jonathan has playdates, goes to birthday parties, and loves to brag about catching more walleyes this summer than his Dad. He is the best of friends with his sister Abby, most of the time. Jonathan has a heart of gold. He’s so loving, and has the BEST sense of humor. I know most days Jonathan never thinks about his hydrocephalus and that makes us so happy.  He’s just a regular kid, thanks to the team of professionals caring for him. We know he will always have hydrocephalus, but we have chosen not to let this define us as a family. It’s simply a part of us. 

We feel so very blessed to have Gillette and all their experts on our team! Everyone we have worked with has been amazing and Jonathan truly feels like his trips to the clinic and stays in the hospital are fun.  What a compliment! He enjoys the video games in the waiting room, the fabulous selection of toys brought into the hospital room by the Child Life Specialist, and still talks about the gift card he received for waiting patiently when an MRI was taking longer than normal. Doctor visits are a regular part of our life and always will be. At Gillette, we are welcomed, respected, and never made to feel rushed. This truly changes the experience. Thank you for making us feel cared for, like family.

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