Inside Gillette Blog


What Miracle Treat Day Meant to my Family

Posted On: 08/29/2014

By Melissa Reich

Editor’s Note: Gillette Children’s Specialty Healthcare participated in Children’s Miracle Network Hospitals (CMN Hospitals) Miracle Treat Day on Thursday, August 14. The following is an open letter to the Coon Rapids Dairy Queen by Melissa Reich, Gillette Mom. Her family stoped by to greet staff, share their story and thank them for their donations to Gillette.

Dear DQ Crew,

My family and I would like to say a HUGE thank you for all you did during our Miracle Treat Day visit! My kids had so much fun and my husband and I were blown away by your hospitality. I would like to tell you a little more about my two kiddos that we celebrated with, Olivia and Elijah.

Olivia has Down Syndrome and a complication of that was a disorder called hip sublexation. Olivia spent over a week at Gillette this past January having reconstructive surgery on her left hip. While in the hospital recovering from her surgery, Olivia became quite ill which triggered a major asthma attack. We are so thankful  that we were in the hospital when this happened. I am unsure what Olivia’s outcome would have been if she were at home.

Olivia spent her recovery in a full body cast from chest to ankle for the next seven weeks. She also endured months of physical therapy re-learning how to walk. Unfortunately, this was not her first time in the full body cast and most likely won't be her last. Eventually she will need her right hip repaired..

Elijah was diagnosed with Epilepsy in October of 2013. He has been through a ringer of tests to find the cause of his seizures and the right medication.  Before his diagnosis at Gillette, he was having seizures almost every day. Due to the rarity of his seizure disorder, we had no clue he was even having seizures. Elijah became quite cognitively delayed due to the frequent seizure activity.  I am happy to report that he is doing much better with a new medication and is now starting to talk in full sentences. His brain is getting the rest it needs in order to focus on his development.

Both Olivia and Elijah have had a long and hard road. Their journey isn't over but my family is truly blessed to have an amazing facility like Gillette. We are eternally grateful to them and to amazing supporters such as Dairy Queen.

Thank you from the bottom of our hearts for you’re over the top generosity. We are very grateful for the smiles and laughs you gave our  kids!

The Reich Family; Kevin, Melissa, Cooper, Olivia, Elijah and Chance

 


Moving …. Teens ….Forward

Posted On: 04/22/2014

Gillette Lifetime helps teens and young adults who have disabilities—and their families—make the move to adulthood

Jessica Day remembers turning 15 and thinking about what adulthood would bring.

“I had a lot of mixed feelings,” says Day, now a 21-year-old graphic designer. “As a teenager, you feel you’re invincible. But I had to accept that, for the rest of my life, I was going to be dealing with having a disability.”

Becky Nelson, social worker at Gillette Lifetime Specialty Healthcare, says concerns about adulthood are common—both for young people and for their families.

“Caregivers have told me, ‘It’s almost like when we got the diagnosis,’” she recalls. “Approaching adulthood is a second phase of having a disability, and families don’t know anything about it. They wonder, what happens after high school? What about work, living arrangements and relationship challenges?”

Fortunately, transition services at Gillette Children’s Specialty Healthcare and Gillette Lifetime can help.

“Dealing With Where I Was”

During her childhood, Day had multiple surgeries to address issues related to cerebral palsy. “It was all about going through those major procedures,” she remembers. “Then, at 15, it wasn’t about having procedures anymore. It was about dealing with where I was afterward.” 

For every teen, changing from a pediatrician to a provider who sees adults is only one part of growing up. Other concerns involve continuing education or workplace choices, housing situations, legal matters and relationships.

“Transition is a process, not an event,” Nelson explains. “It’s not just handing off your health care to another doctor—it’s a philosophy of preparing for adulthood.”

Gillette’s philosophy includes introducing our patients to the topic of transition when patients turn 14. In adulthood, some patients might move to Gillette Lifetime for continuing specialty care; others might change to providers in their community. A fully accessible clinic located in St. Paul, Gillette Lifetime offers medical care, rehabilitation therapy, adapted equipment and other services tailored to adults with specific disabilities that began in childhood. When appropriate, the staff refers teens and families to community resources for legal, medical and other issues.

“Gillette Lifetime helped me through a lot of obstacles,” Day recalls. “I learned about subsidized housing and got connected to services like Metro Mobility. They have counselors to talk to. And even though I’m not planning on starting a family for a long time, I’ve talked to the doctors about it. It’s nice to know they’re there for you at different stages in life.”

One Thing at a Time

Although Day lives in her own apartment, not everyone can live independently or make life decisions without significant adult support. “That’s when we look at things like guardianship and supported living,” Nelson says. “We encourage independence or interdependence to the highest degree appropriate for someone’s level of ability. It’s a highly individual process.”

When she meets a new patient or family to discuss transition, Nelson about their most pressing concerns. Then she helps people determine what needs immediate attention and what can come later. “The key word I use is ‘we,’” she says. “I see families relax as they start to understand that they’ll have a partner in this journey, medical and otherwise.”

Day recommends Gillette as a place to begin looking toward adulthood. “In the long run,” she says, “they’re going to help you reach the goals you want to in life.”

Preparing for Adulthood: Getting Started

It’s never too early to begin developing a transition plan. Gillette offers these services—and more—for teens and young adults who have disabilities and for their family members:

  • Phone and in-person consultations (to discuss legal, medical and independent living issues)
  • Counseling sessions (to identify strengths and challenges, support decisions, and strengthen coping skills)
  • Evaluations for independent living, computer access, and school or workplace accommodations
  • Psychological and neuropsychological testing
  • Help finding primary and specialty care providers who treat adults

To learn more, email Becky Nelson or call her at 651-638-4706. Or see transition services for teens and adults.

 


Gillette’s Lifesaving Care Helps Preschooler Thrive

Posted On: 02/11/2014

Out for a morning run, Erica Bratland paused to change the playlist on her iPod. As the music stopped, a distant noise caught her attention. “I don’t know why, but I knew something was wrong,” Bratland recalls. “I started running toward the sound.”

As she neared a busy intersection in her suburban St. Paul, Minn., neighborhood, she saw the mangled wreckage of her mother’s car. Her mother was hanging from the driver’s side door, and her 5-year-old son, Trip, lay on the ground. First responders from a nearby fire station had cut Trip from the wreckage and were working to revive him.

When the ambulance arrived, it rushed Trip to the nearest Level 1 Pediatric Trauma Center, which Regions Hospital operates in partnership with Gillette Children’s Specialty Healthcare. “We were afraid. We didn’t know what was going on,” says Bratland. “But from the minute we entered the hospital, we felt supported. The doctors and nurses made a really, really, really scary moment seem manageable.”

“All we wanted was to hear his voice.”

In a coma, Trip wasn’t breathing on his own and had multiple lacerations, including a hole in his cheek. Doctors placed him on a ventilator and moved him to Gillette’s Pediatric Intensive Care Unit (PICU).

“Trip was stable but didn’t wake up,” Bratland recalls. “All we wanted was to hear his voice and see him open his eyes.”

When Trip’s lung function didn’t improve, Gillette’s surgical team performed exploratory surgery to look for internal damage. They found and repaired a small tear in his intestine. The surgery relieved pressure on his lungs, and within days Trip was breathing on his own without the ventilator.

“That was cause for celebration,” says Bratland, “but it was also a day when we had to swallow some very hard truths.” An MRI revealed that Trip had sustained a traumatic brain injury.  “No one could tell us for sure what that would mean for him,” says his father, David Bratland, a golf course manager. “Trip loves to play golf. We didn’t know if he’d ever speak or walk again, much less swing a golf club.”

Trip’s Recovery Begins at the Region’s Top Rehab Center

Fortunately for the Bratlands, Gillette offers the region’s top rehabilitation center for children and teens and the nation's largest group of board-certified pediatric rehabilitation medicine physicians. Twelve days after the crash, Trip was strong enough to move from the PICU to the inpatient rehabilitation unit, where he began the hard work of recovery.

Gillette’s intensive program includes daily sessions with physical, occupational and speech therapists. “We entered the unit in May not knowing if Trip would ever walk again,” says Erica Bratland. “I didn’t think there was any possibility he would be able to start kindergarten in September.”

But Trip surprised everyone. “His recovery happened fast,” his mother says. “It felt like a miracle.”

Going Home

Less than a month after the crash, Trip went home—walking and talking on his own. Except for a scar on his cheek, he had no visible signs of the near-fatal crash.

Trip continued to receive outpatient physical therapy at Gillette’s St. Paul Clinic for three months. “We don’t know if there will be long-lasting effects of the brain injury,” says Bratland. “But for now, we’re grateful for every day. Gillette made the difference between a child heading off to kindergarten and a family facing a holiday without that child. We’re acutely aware that, if we hadn’t gone to Gillette, our outcome would have been very different.”


Hot cocoa, comics, and compassion from a 6-year old that gave back!

Posted On: 01/13/2014

Penelope Deignan is a charming and funny 6-year-old whose mom, Kelly, describes as a swimmer and an artist. To those who don’t know her, Penelope an average first grader who has a scar on the front of her neck. To some, a scar may be something one tries to cover up or hide, but to Penelope, the scar is a part of her story.

Penelope’s Gillette Children’s Specialty Healthcare experience began when she was successfully treated at Gillette as an infant because of hip dysplasia. She experienced no further health issues until, while at cheerleading camp last August, Penelope began having neck pain and returned to Gillette for treatment. She was soon diagnosed with Langerhans cell histiocytosis (LCH), a rare condition that occurs when the body accumulates too many immature Langerhans cells, a type of white blood cell that normally helps the body fight infection.  When too many of these blood cells build up and accumulate, they can form tumors or damage internal organs.  In Penelope’s case, LCH had caused a tumor in the C5 vertebrae of her spinal column—causing pain in her neck.

 After the diagnosis, the plan was to treat the tumor with chemotherapy. But just before the treatment was to begin, the tumor unexpectedly collapsed. Penelope spent a week in Gillette’s orthopedic unit while doctors managed her pain. During this time, her tumor collapsed once again, causing additional complications. That’s when pediatric neurosurgeon Patrick Graupman, M.D., performed a spinal fusion surgery in September, 2013 to prevent permanent damage to her spinal column.

Despite everything Penelope went through, she wasted no time springing back into action. Just three months after her surgery, today Penelope is back in the pool and back in school.  However, Gillette was never far from Penelope’s mind after her stay ended.  “She loved her experience at Gillette,” Kelly explains.  “She wanted to go back after she came home from the hospital! It was a really big experience for her--but a great one.”

Soon after Penelope came home from the hospital, she began drawing comics about animals going to Gillette for care. It didn’t take long until Penelope’s friends started asking for her comics. Instead of giving them away, Penelope decided to have a hot cocoa stand outside of their house, selling hot cocoa and comics to raise money for Gillette. So one chilly day, she bundled up, set up her stand and, in total, and raised $15! She donated every penny to Gillette.

“I’ve come to appreciate the caring staff and how they helped Penelope feel really good about herself,” says Kelly. “They always gave her confidence that she’d get better.” Kelly adds, “I think it says a lot that Penelope wants to go back to Gillette and become a surgeon like Dr. Graupman.” Until Penelope can reach her goal of being a surgeon, she’s planning even more hot cocoa and comic sales to continue giving back.  


Juvenile Arthritis Affects Area Families

Posted On: 12/04/2013


Kid Of The Day - Jaxson’s Story

Posted On: 11/07/2013

My pregnancy was healthy and normal. An ultrasound said we were having a girl! My husband and I were on vacation four hours from home. We spent hours in our boat talking about how we would take our daughter fishing. I was 23 weeks along – just over halfway. But on the last day of vacation, I went into labor. I was airlifted to a hospital with a high-level NICU. And the baby was born. It was not breathing.

Doctors were working frantically. Everyone was crying. And then I heard the most amazing sound – a tiny little cry! The baby was alive! My husband was able to cut the cord. That’s when he noticed that we had a boy instead of the girl we were expecting! Jaxson surprised us by coming 17 weeks early, and he has kept us on our toes ever since.

Jax was the youngest baby in that NICU…ever. Doctors gave him a 4-percent chance of healthy survival. But he proved from day one that he was here to stay. Our little 1-pound, 8-ounce fighter was the “feisty” baby. He was a wiggler and was drugged so he wouldn't pull out his IVs. He extubated himself four times. He had significant trouble with his insulin levels and received six blood transfusions in the first three weeks of life. Jax had aggressive and severe ROP in both eyes, which required Avastin injections and laser eye surgery. He is still monitored closely, but so far his eyes look great!

After 93 days in the NICU, Jax came home. He was released an entire month before his due date! This is unheard of for 23 weekers. His pediatrician calls him “a superhero” every time he sees him.

Jax has done very well, but he still faces some challenges. He’s had four surgeries, with another one scheduled for this fall. He struggles daily with chronic lung disease. We have a million doctor appointments, but the main thing we do is love each other! Jax just turned 14 months old and after months of physical and occupational therapy at Gillette Children's Specialty Healthcare, our little buddy celebrated by pulling himself up to standing! He is always on the go.

Jax has the amazing power to lift your spirits anytime he’s in the room. His genuine smiles, open-mouthed kisses, and friendly “talks” make every day special. Jax is also independent. He does his own thing and goes his own way. He doesn't fit the mold and defies the odds every single day. Jax is also very adaptable. Jax is the most laid–back kid. He goes with the flow and does it with a smile on his face. Jax had oral aversion problems when we introduced solid food. After only three months of therapy, he will now eat whatever you put in front of him. He faces challenges head on: show him once, and he figures out a way! Jax is a hilarious kid – he makes us laugh everyday with his funny faces and goofy songs. He loves music and always moves to the beat. Some of his favorite things are going for walks in his stroller, reading books, playing with his cousins, and meeting new people. He’s so friendly – he has a smile for everyone he meets. You’d never know by his happy personality that he spent three months in the hospital fighting for his life!


Katie’s Story

Posted On: 10/18/2013

“You can’t diagnose a miracle,” says Katie’s mom, Edwina, when describing her extraordinary daughter. Katie’s medical journey is unique and, in many ways, still a mystery.

Healthy, pink and kicking at birth, Katie suddenly stopped breathing. Two days later, doctors told Edwina the outcome was grim. “Her brain scans were flat, indicating no activity,” remembers Edwina. “Those were tough days.”

But two days after that, Katie woke up—and, with her family’s help, her brain began the slow process of healing. “We read to her, talked to her, did everything we could to stimulate her,” says Edwina. “Her brain began to rewire itself.”  

As Katie continued her remarkable recovery, it became clear that she faced physical limitations. She was soon diagnosed with cerebral palsy, a form of brain damage that prevents her from moving as typically developing children do.  Though every child’s cerebral palsy results in different symptoms, Katie’s is especially unusual—it keeps her body in constant motion.

“Katie’s body is a mix of multiple movement disorders conflicting constantly with one another,” explains Edwina. “It’s like nothing doctors have seen before.”   

Katie has been coming to Gillette Children’s Specialty Healthcare for most of her life, where evaluation in the hospital’s Center for Gait and Motion Analysis has helped doctors better understand her unique combination of movement problems. Treatments and therapies have improved her muscle tone and strength, helping her gain independence. 

“Katie used to have to crawl around our home because her muscles were tight and painful,” says Edwina. “Today, my daughter can walk from room to room without fear of falling. It’s a blessing!”  

She adds that Gillette has been equally beneficial to Katie’s self-confidence. “We appreciate the friendships, the smiling faces,” explains Edwina. “Gillette gives children the ability to be themselves, to find out who they are.”

A bright and articulate sixth grader, Katie’s mission in life is helping people understand that children who have special needs are no different from other kids. “She realizes that her ability to speak brings tremendous opportunity to share what it’s like to live with a disability,” says Edwina.


The Healing Touch of a Pink Hippopotamus

Posted On: 10/16/2013

CaptionIf you could give the gift of healing to someone in need, what would it look like? Money? Food?  Clothing?

To Michelle and Pete Dankwerth, that gift came in the form of a children’s book, “Hope the Hip Hippo.”

When their daughter, Abbey, was just a few weeks old, she was diagnosed with congenital hip dysplasia. The special care nursery at their local hospital referred the family to Gillette Children’s Specialty Healthcare, where they have continued treatment for Abbey’s hip dysplasia ever since. Now 5 ½, Abbey has had a number of special X-rays, surgeries, and hip and leg casts at Gillette.

During Abbey’s journey, her parents struggled with how to talk to her about each surgery and how to respond to her questions. “We wanted to help her understand and cope with the events happening in her life,” Michelle explains. After one of Abbey’s surgeries in January 2013, Michelle stumbled upon “Hope the Hip Hippo” on the Internet. The book chronicles Hope’s journey with hip dysplasia. “I thought it looked interesting, so I bought it,” she says. “Abbey instantly loved it!”

The book represented something very special for Abbey and her parents. “It gave her an understanding of what she was going through and put it in kid’s terms,” Michelle continues. Not only was the book helpful for Abbey, but it helped her parents as well. “While reading with her, it was a way to spark a conversation, see where she was stuck and help her understand,” Michelle says.

Both Michelle and Pete say they appreciate the services they’ve found at Gillette. “From the time we sought treatment at Gillette, we’ve had an outstanding experience,” explains Michelle. “As much as it isn't what you expect when you bring your child into the world, we are thankful for the extended family we have at Gillette.” After the family’s experiences at Gillette, Michelle and Pete wanted to give back because of the support and care they’d received. At first, they weren’t quite sure how to do that. 

Because of how much the book had helped Abbey and their family cope and heal, they decided to donate copies of “Hope the Hip Hippo” to Gillette. Their vision with this donation is that other families whose child has hip dysplasia will take it home and continue to read it and have conversations with their child.

“The book is perfect to help kids like Abbey and often relates to a lot of different parts of her journey. It gave her an understanding of how she fits into this picture,” says Michelle. Starting this year, the family hopes to donate the books to Gillette every year to show their gratitude and to support other Gillette children and families. To learn more about the book, visit: http://www.hopethehiphippo.com/


Kendall’s Journey: 4 Months Post-Op

Posted On: 07/31/2013

Four months ago, our 15-month old daughter underwent a second surgery at Gillette Children’s Specialty Healthcare to complete the tissue expansion and removal process of her large-sized congenital nevus. Recently, Kendall had another follow-up visit with her surgeon, Dr. Robert Wood.

When we met with Dr. Wood at 3 weeks post-op, he explained that Kendall's biopsy revealed both congenital and sebaceous nevus--a rare compound nevus.



The biopsy also showed that while one of these nevi were completely removed, there were still remaining cells of the other--meaning the possibility of pigmentation reappearing and the necessity to repeat the entire process.

But I felt overcome with this huge sense of PEACE--a peace that has been a part of the healing process over the past four months. Although I had hope that the nevus cells would not return, I mostly prayed that GOOD THINGS would come out of her situation and that we would make the most of whatever came our way.


 

Having a child who requires on-going medical attention and surgery has made me more of a realist in this area. I no longer attended doctor's appointments with the expectation that my kids are healthy--something I used to take for granted.

Healthy children are a lot of work. Adding the additional time, stress and expenses that go along with caring for a child with medical needs is a lot to manage on top of EVERYTHING ELSE you are managing as a parent.

I learned to focus on doing the next best thing and to take things one step at a time.

So when we drove to Gillette Children's, I was prepared to hear what this next step would be.

After examining her scalp and scar tissue, Dr. Wood told us HE DID NOT SEE ANY NEVUS PIGMENTATION. He told us that she looked great and we wouldn't need to see him again until February.

An entire 8-month period with no hospital visits? Awesome.

No more medical bills? Hallelujah.

A healthy child? Praise God.

It’s still sinking in.

Once Kendall reaches the one year post-op mark in February, whether or not the nevus cells have returned should be a done deal.

Dr. Wood also told us that we’ll likely want him to remove some of Kendall's scar tissue that has stretched, which would be a scar revision surgery at some point next year. If left alone, this could potentially become a noticeable bald spot, so we'll trust that he can help sister out with this. No hair will grow on the 8-inch line of scar tissue, but with a full head of hair, this should not be an issue for her.

As relieved as we are to have a positive check-up, we will miss not seeing the wonderful craniofacial team at Gillette Children’s. I remember going in for Kendall’s first expansion and being terrified of all the unknowns--Will the injections be painful for her? What will she look like? Is this going to be traumatic for all of us?

That is when we met Martha, Katie and the wonderful staff who put to rest all of our fears and concerns about what the 18-week tissue expansion process would be like. I felt that they cared for Kendall like family--answering my endless, repetitive questions with patience and always making our daughter’s health and well-being their first priority.

I left that first expansion appointment knowing WE COULD DO THIS.

When we first met with Dr. Wood and he explained to us the tissue expansion process, Kendall was just 6 weeks old. Slowly, brick by brick, stress was added to our everyday life until FINALLY, on February 11th, these bricks began to slowly disappear.

It is a freeing experience to have this weight removed. I'm thankful that Kendall will never know what it's like to carry the burden of this process, and I'm grateful for the medical team at Gillette who continues to make this journey a success for everyone.


Bison Booties Donation Keeps Kids’ Feet Cozy, Colorful

Posted On: 05/12/2013

Thanks to a generous small business owner and a grateful patient family, children receiving surgery at Gillette Children’s Specialty Healthcare will receive a fun surprise during their hospital stay — their very own pair of adorable Bison Booties!

Bison Booties creator Erica Hager of Bismarck, N.D., was inspired to donate the booties after hearing about Gillette from her cousin, Kendra Bachmeier. Kendra’s 15-month-old daughter, Cambria, began seeing pediatric orthopedic surgeon Tom Novacheck, M.D., after her parents noticed she walked with a significant limp. She was soon diagnosed with hip dysplasia—her left hip is dislocated completely—and came to Gillette for corrective surgery in April.

“Many children on Gillette’s orthopedic unit, like Cambria, are in body casts for weeks after surgery,” says Kendra. “Bison Booties have been awesome for her to wear during this time! The nurses even mentioned how ideal they are for kids in the hospital.”

After returning home to Bismarck, Kendra told Erica that she’d like to purchase 10 pairs of Bison Booties for Gillette patients.  But Erica provided them free of charge instead—and took it one step further. She gave her customers the opportunity to purchase a pair of booties for a child at Gillette, promising to match each donated pair.  “She truly went above and beyond!” says Kendra.

Thanks to Bison Booties customers throughout the U.S. (even Alaska!) Erica donated 36 pairs of the one-of-a-kind shoes to Gillette. Kendra and Cambria, who returned to Gillette last week for a follow-up hip procedure, presented them personally.

 


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