Category Archives: Patient Stories
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.
By: Dana Shelso
My daughter, Olive, was born with a congenital heart defect because of an extremely rare chromosome deletion that has never been reported before (17q11.2 micro-deletion).
Olive started visiting Gillette’s Feeding Clinic for therapy in 2011, at age 1 ½. We liked it so much that we also started physical therapy, occupational therapy, and most recently speech therapy at Gillette’s Minnetonka Clinic. Her therapists are Chrissy, Leah, and Megan. Olive has made great progress and development in her therapy areas!
This past summer, we noticed global delays and were referred to pediatric neurologist Nicole Williams, M.D. for evaluation. Dr. Williams recommended an MRI, which revealed that Olive has a condition called Chiari 1 malformation. Basically, this means the back of her brain, called the cerebellum, pushes into the upper spinal canal. We also found out that Olive has a tethered spinal cord, meaning her spinal cord is abnormally attached to the tissues around her spine.
At that point, it was time to determine the best treatment plan for Olive, which included surgery. In December 2012, Olive had two neurosurgeries at Gillette. Pediatric neurosurgeon Peter Kim, M.D., performed a Chiari decompression while Debbie Song, M.D., released her tethered cord. Soon after these surgeries, doctors also discovered Olive would need a third procedure—an emergency surgery to treat hydrocephalus, or excess fluid on the brain, with an implanted shunt.
Olive’s unexpected diagnosis of hydrocephalus was one of the most surreal, scary, and numbing moments I have experienced. I am so thankful Dr. Kim took the time to explain everything in detail and answer every question we had. It was quite a whirlwind evening but we knew that Olive was receiving great care.
Throughout Olive’s time at Gillette last December, we realized how truly awesome Gillette is — not that we didn’t think so before! All of the PICU staff were great. The nurses, nurse practitioners and surgeons treated us like we were part of the “Gillette family” and we were included in any and all treatment decisions that were made for Olive.
We truly love Gillette. Olive has come so far in her almost 4 years of life, and we owe much of this to the fabulous care she gets from her Gillette team!
Dear Gillette Team,
We are thrilled to share what our son, Leo, has achieved in the past year. It is almost one year ago (March 28, 2012) since we traveled from the United Kingdom to Minnesota for Leo’s selective dorsal rhizotomy surgery. He is now walking independently indoors and we are totally thrilled about it!
The last year was, and still is, very intense. Leo has been doing physiotherapy five times per week with professional therapists. In addition, he is swimming, riding horses, bike riding and going to kindergarten.
Outside of therapy we took, and still take, every chance to make him work his muscles, from taking him swimming to Croatia, walking around Legoland, Windsor and Disneyland in Paris. He needs to be motivated constantly in order to keep up this intense regimen.
Leo is majorly into Star Wars now. He changed our names to R2-D2 (mom) and Chewbacca (dad). Leo calls himself C3PO and walks around with his light saber, especially when the physiotherapist knocks on the door! It is great to see him walk independently.
The selective dorsal rhizotomy surgery definitely was worth it. Leo is a confident and happy boy. He does not struggle with pain anymore, and his reduced spasticity gives him so much more energy for play, interaction and daily activities. Leo starts school in April and we are sure he will have fun.
Thank you for all your expertise, care, support, trust, knowledge and love.
- Nancy, Marc and Leo Pugliese
At Gillette, we believe our staff members are something special. The compassion and care they provide to our patients is remarkable. In some cases, that compassion grows from a unique understanding of what our families are going through—because many of our employees are also patient families.
Take, for example, Eleesha Hruza, a Gillette nurse. In 2005, Eleesha gave birth to her son, Javier, in Bemidji, Minnesota. When Javier was a month old, he contracted a severe infection and was hospitalized for more than a month.
“Medical professionals told me his outlook was bleak,” says Eleesha. “Very few professionals believed Javier would even survive his first year of life.” He was eventually diagnosed with cerebral palsy, and at 18 months he was referred to Gillette Children’s Specialty Healthcare.
“I had never heard of Gillette, and didn’t know what to expect,” says Eleesha. “When we arrived for our first appointment, I was blown away. I was given a thorough education about Javier’s disability, and was told he would have a happy and healthy future. What a gift for someone to believe in him!”
Over the next year, Javier saw medical specialists at Gillette, and his health dramatically improved. His Gillette medical team took pride in his triumphs and never lost hope. Today Javier is a happy, healthy, 7-year-old first grader.
“The Gillette nurses who cared for Javier inspired me to become a nurse,” says Eleesha. “And now I work at Gillette as a full-time registered nurse, doing my best to help other children the way those nurses helped Javier.”
Eleesha adds, “I can say with great conviction that the people who work at Gillette are the most committed and caring group I have ever known. I hold myself to these standards because I want to give each patient and family the kind of care that Javier and I received. I’m asking people to support this wonderful hospital because I know on a very personal level the importance of the work we do.”
Christmas morning 2011, my water broke one week early, sending us scurrying to the hospital at 2 am and leaving behind our 2-year-old son with neighbors. Four hours later, as the rest of the world was waking up and opening their gifts, my husband and I delivered ours–Kendall Christine.
She was healthy and we celebrated our Christmas blessing–my heart was full of contentment and happiness only a newborn baby girl could fill.
Then the next day, a pediatrician came in with the blow. The “birthmark” on the top of Kendall’s head was actually a congenital nevus. Being in mama-heaven, this news didn’t faze me at first. Seeing my lack of concern, the pediatrician proceeded to tell me this is a big deal and we need a biopsy to make sure it’s not cancerous.
I thought, wait a minute now, don’t go throwing that “c” word into things. Life is perfect, can’t you see? Leave us alone. Go away.
But it didn’t and it wouldn’t.
For me, pity began 6 weeks later with our first visit to see Dr. Wood. This was a defining moment, as I became aware that her nevus was an issue and that it would not be an easy or simple task to remove it. He explained to us the tissue expansion process, which entailed inserting an expander underneath the skin on her scalp and slowly, over the course of many months, injecting this with saline and stretching the skin to a large size. This newly-stretched skin would be used to cover where the mole was once it was removed.
Kendall seemed so fragile and I honestly couldn’t wrap my mind around the reality of this process, but Dr. Wood’s experience and confidence put me at ease. He recommended that we begin tissue expansion once she reached 9-months of age. We considered the options and made the decision to proceed–plans for October 15th were underway.
You could say that preparing for Kendall’s first surgery was much like training for a marathon–a marathon filled with obstacles and hurdles, that is. I knew going into it that I would have to pace myself, that this wasn’t a quick sprint and that we needed to find endurance for the long haul.
I had stayed strong and fought off pity pretty well–right up until the second I laid eyes on my daughter after her surgery. It consumed me in ways that I wasn’t prepared for, yelling at me your daughter looks different, and this isn’t fair!
Those first few days and weeks were painful–painful in ways that I can’t explain or am too embarrassed to tell. Pity told me different wasn’t as good and even different is just plain ugly. People’s doting words of beautiful quickly turned into looks of concerns and questions. I felt like I was constantly fighting off anger and tears that Kendall had to endure all of this and that we were in this situation.
We had a battle, me and pity.
When our 2-year-old son saw Kendall for the first time post-surgery, he looked at her with his big-brown saucer eyes in great concern. We explained to him that he could no longer play rough with sister and that she had an “owie” on her head that he couldn’t touch. I thought he would be upset or lose interest playing with her.
He just looked at me and asked, Can I kiss her?
This was the beginning of a new attitude for me, defining my own views on what beautiful and happiness mean. I was no longer seeking the world’s acceptance or approval because, as my son reminded me, she is already perfect. My perception began to change and over the next month, pity was replaced with confidence–a confidence that told me I was strong, that we were lucky to be in this treatable situation and to take this challenge and to turn it into something positive.
You see, pity did nothing but cripple me. It threatened to paralyze me and prevent me from making the positive response my daughter needed. Only by conquering my own pity was I able to provide strength for my daughter.
I gained confidence as I realized the things I once concerned myself with were no longer important. People’s words or reactions no longer mattered to me. I was reminded that I was being strong and bearing the burden for my daughter so she wouldn’t have to. And I realized that this process was a defining time for our family, but that it didn’t define who we are.
The past three months have involved weekly injections at Gillette Children’s to enlarge Kendall’s expander. I can’t say enough good things about the medical team that surrounded us–they have made this process smoother and easier in every way possible. The fourth floor has been a place of transformation for our family–physically and mentally. Doctors, nurses and other parents look into my child’s eyes and see that she is beautiful. It has been empowering and enabled me to shed my fear of judgment from others, along with judgment from myself.
I have such respect for the children that we see each week and deep admiration for the parents by their side. Whether a child is facing long or short term medical needs, life-changing or life-threatening, I believe what every parent wants is for their child to feel loved and accepted–to know that they can live and thrive through their uniqueness in this world.
Now here we are, in the last stretch of Kendall’s medical marathon. I once thought this journey was about crossing the finish line, but now realize it is about deciding to run.
The Cure Pity campaign gave me the strength and confidence to share Kendall’s journey. When the day comes, I’m excited to tell her how brave she was through all of this, how she rocked our world that Christmas morning and how she continues to teach us valuable lessons about the important things in life.
I hope that when you look at Kendall, you see past the bump and notice her gorgeous deep blue eyes and pink cabbage patch lips. I hope you see a one-year-old who is on the verge of walking, filled with a passion and determination in everything that she does. Ultimately, I hope you are able to look past the differences and see her through the eyes of a 2-year-old.
When Tasha Schuh noticed the Facebook page for Ms. Wheelchair USA, she clicked “Like” and thought little more about it.
“Some of my caregivers said, ‘You should get involved,’ Schuh recalls. “But I’m not the pageant type.” She was already busy, writing a book about her life after an accident paralyzed her from the chest down. In addition, she gives motivational speeches and volunteers as a mentor for people who’ve recently sustained spinal cord injuries.
It’s been a long journey since, a month before her 17th birthday, Schuh stepped backward on a high school stage—not realizing someone had opened a trap door. She fell 16 feet, breaking her neck and damaging her spinal cord on the cement floor.
“I know what it’s like to feel hopeless and want to quit,” Schuh recalls. “I got involved with Ms. Wheelchair USA because its vision isn’t about beauty. It’s about what women can accomplish in a wheelchair.”
A year after seeing that Facebook page, Schuh filled out a 20-page application for Ms. Wisconsin USA. She won the title on the strength of her application, then traveled to Ohio for a five-day national pageant. “It was amazing,” she says. “I got to meet wonderful women who had dreams and goals just like I did, whose stories were equally inspirational.” The contestants attended workshops about accessibility, advocacy and other disability issues. They made blankets to donate, attended a swing dance and interviewed with judges.
Each contestant gave a speech focusing on their “platform”—the main idea they were promoting—and on what they would do if selected. “My platform was the power of a positive attitude,” Schuh says. “When they said my name, at the end of all the awards, I was shocked—and so honored to be taking home the crown.”
Since the pageant, Schuh has appeared on news and talk shows throughout the U.S. “So many opportunities have opened up for me because of the title,” she says. Recently, she was named 2012 American Rehabilitation Champion by the Foundation for Physical Medicine and Rehabilitation. She’s finishing her book and planning her wedding.
“My dream is to give hope to people by telling my story,” she says. “Attitude is huge. It’s so easy to focus on what you’ve lost, but we all have things we can be thankful for. Air to breathe. Hot running water. Freedom in America. It didn’t happen overnight, but when I stopped thinking of what I lost, I started living a life that’s good. Now I’m happier than I’ve ever been.”
Tasha Schuh’s book, My Last Step Backward, will be available soon. Check her website, http://tashaschuh.com, for more information.
For Elizabeth Brechtel and her 5-year-old daughter Naomi, the start of Naomi’s kindergarten year brought excitement, anticipation—and a little anxiety. That’s because Naomi has spina bifida, a complex condition that causes partial paralysis, hydrocephalus and other complications.
As Naomi prepared to enter Somerset Heights Elementary, Elizabeth knew her daughter’s engaging personality would aid her transition. But some questions still remained. How would classmates react to Naomi’s differences? How would Naomi handle their questions? Would she fit in?
Similar questions had entered Melissa Zeleny’s mind four years earlier when her daughter Hayden, 8, started school. In the fall of her kindergarten year, Hayden, who has cerebral palsy, came to Gillette for a series of multi-level orthopedic surgeries. After a two week hospital stay, Hayden returned to school — first using a wheelchair, then a walker. She repeated the process a year later.
“As an inpatient at Gillette, Hayden was used to seeing many children in wheelchairs, walkers and braces, and using assistive technology,” recalls Melissa. “But at Somerset, she noticed she was the only child who used these things.”
Hayden, today a third-grader, first met Naomi several years ago—she’s in the same grade as Naomi’s older brother, Xavier. As the girls’ mothers connected and began comparing experiences and stories, they soon learned both girls came to Gillette for treatment.
This year, Hayden had an opportunity to participate in Somerset Heights Elementary’s Big Buddy program, which arranges for an older child to serve as role model to a younger peer. And she knew exactly the student to mentor! She asked Principal Mary Bowman to arrange for her to be Naomi’s Big Buddy, and Bowman happily agreed.
“From taking a little longer to get around school, to falling down more easily, and most importantly, wearing braces, Hayden is thrilled to have a buddy who is ‘just like her,’” says Melissa. An added bonus? The girls have become fast friends.
Like most 19-month-olds, Owen Marinkovich is eager to explore anything and everything with his mouth. But unlike his peers, until recently, Owen showed little interest in swallowing food, the result of a lifetime of negative experiences with feeding tubes, vents and other medical equipment in his mouth. A micro preemie born at just 24 weeks gestation, Owen has already overcome a multitude of obstacles, showing courage befitting of his name’s meaning, “young warrior.” But as he continued to experience difficulties with food, his mom, Tatum, sought help from Gillette Children’s Specialty Healthcare’s Feeding Clinic.
An initial evaluation determined Owen was able to eat – a critical first step. However, like many kids with complex medical histories, eating no longer came naturally to him. Negative experiences had also impressed upon Owen the need for control – although he’d put anything in his mouth, no one else, including his mom, could do so. Through weekly therapy sessions reinforced with at-home practice, Tatum and occupational therapist Leah Hall began the step-by-step process of helping Owen see food as fun, pleasant – and, importantly, safe.
Knowing Owen loved using his mouth to explore, Leah suggested he practice with high-flavor foods like gummy worms, suckers, beef jerky and chips—items that would help him experience flavors in a non-threatening way, without the expectation of chewing or swallowing. She then encouraged him to try “meltable” foods, like cheese puffs, which would dissolve quickly in his mouth without much need for chewing. Leah also taught Tatum to dip Owen’s favorite pacifiers and toys in baby food, helping him to discover new textures on objects he already enjoyed.
As weeks progressed, so did Owen—first mouthing spoons of baby food himself, then allowing mom to feed him. Recently, using the sign language symbol for “eat,” Owen requested food for the first time. “It made my week!” recalls Tatum of the milestone.
In just 2 months of therapy at Gillette’s Feeding Clinic, Owen has gone from being fed exclusively via g-tube to eating several containers of baby food each day. He’s exploring different textures—including crunchy and puffy foods—and discovering new flavors. All of this comes just in time for Owen to participate in Thanksgiving for the first time ever. For a family that’s been apart on far too many holidays due to Owen’s hospitalizations, it’s especially meaningful.
“On previous holidays Owen has either needed to stay back from family celebrations, or he wasn’t strong enough to sit at the table, or he wasn’t eating,” recalls Tatum. “This Thanksgiving, he’ll be able to sample things like mashed and sweet potatoes, and physically be present as we enjoy the meal. What an amazing thing, as his mom, to begin to think of holidays as a family activity. It really is something to be thankful for.”
Tatum likens Leah to a coach helping to guide her in playing Owen’s “game” of discovering foods. “Owen and I have to practice, and ultimately play the game, but it’s a lot easier with someone who can coach us minute by minute, even second by second,” she says.
Cora Gryskiewicz is a spunky, high-energy toddler who loves to “help” her mother, Paula Gryskiewicz, with anything and everything she can. “Cora is my little turkey,” says Paula, lovingly calling Cora by her favorite nickname. “She is always on the go!”
Indeed, Cora’s busy schedule rivals that of most adults. That’s because, along with visits to her neighborhood park and playtime with mommy, Cora receives physical therapy three times per week at Gillette Children’s Specialty Healthcare, where she also sees physicians for help managing a complex disability called spina bifida. Paula discovered Cora would have the condition, which occurs when the spine develops abnormally, when she was just 20 weeks pregnant. It causes complications such as, in Cora’s case, hydrocephalus (fluidon the brain), clubfeet, and lower extremity issues.
When Cora was less than a day old, Dr. Patrick Graupman, a pediatric neurosurgeon at Gillette, performed surgery to close the opening in Cora’s back caused by the condition. Other major surgeries have followed—including an orthopedic procedure next week—which, along with regular physical therapy at Gillette’s Burnsville Clinic, have enabled Cora to walk with assistance of forearm crutches, which she calls her “sticks.” Walking is an especially significant achievement because Cora has very limited feeling in her feet and lower legs.
Paula, who enrolled Cora in physical therapy at Gillette when she was just 4 months old, says that early intervention has been vital to Cora’s independence today. She also credits Cora’s Gillette therapists, PT Stephanie Zigan and PT assistant Amanda Larson, with enabling her to succeed. “I firmly believe that Cora is as mobile as she is today because Stephanie pushes her,” says Paula. “She uses positive reinforcement that makes Cora WANT to work hard!”
“Gillette is like a second family to us,” concludes Paula. “Everyone there is wonderful. They recognize Cora and greet her by name. I love that!”
Gillette welcomed a special guest earlier this week – Minnesota Vikings punter Chris Kluwe! Kluwe visited Gillette to interview Dr. Mark Gormley as part of a documentary film to raise awareness and support for people living with spinal cord injuries. As part of the film, which is being created by a Gillette patient family, Kluwe spent the entire day in a wheelchair! Here’s a preview of the day’s activities. We’ll share more, including photos of our visitors joining with Dr. Gormley to sign Gillette’s CurePity Pledge, next week.