Inside Gillette Blog

My Gillette Story by Lana Beaton

Posted On: 12/10/2014

Our son Alex (pictured right with brother, James and sister, Stella) was diagnosed with left-hemiplegic cerebral palsy at 14 months old. We were unsure of what that would mean for Alex and for our family, but we felt confident in our hometown physician. Alex was on a great path, and he improved by leaps and bounds in the year after his diagnosis. Unfortunately, less than a year later, her career took her away from the area, and from us. We knew our care plan with Alex would be a long road, and we didn’t feel comfortable leaving that up to chance. We were beside ourselves with worry.

James, Alex and StellaWe reached out to the exiting physician, pleaded with her to give us some guidance even though Alex was no longer her patient. She gave us the best advice we could have ever gotten. She said, “You’ll have to make the 5-hour trip to see someone there, but if he were mine, I’d take him to Gillette Children’s Specialty Healthcare in St. Paul.”

With that, we made the first call and scheduled a consult with a doctor at Gillette. From the minute we walked into the gorgeous facility and met the smiling staff and helpful nurses, we knew that we had found the place for us. Our doctors at Gillette, Marcia Ward, M.D., and Stephen Sundberg, M.D., take such amazing care when working with Alex and our whole family. They work around activities (such as travel and new babies and football games) to make sure that he gets the care that he needs, while helping us maintain a normal family life.  Alex has had inpatient and outpatient surgeries at Gillette, he’s participated in gait lab analysis (so cool!), and he’s utilized the Assistive Technology Department (ATD) Mobile Outreach services (Joel is amazing!) for his ATD needs. It’s amazing to us how all of this care comes together so seamlessly.

Now, at 12 years old, Alex is a strong, big kid. He is resilient, courageous, fun...and just downright awesome. His differences may make things more difficult, but he never lets them slow him down. He is active in sports (aspiring to take our racquetball community by storm this year) and is "that kid” at school who everyone loves—teachers and kids alike. He's an A student in seventh grade and a wizard with anything engineering. (He has a small fortune invested in the coolest LEGO collection you've ever seen!)  

We wouldn’t think of going anywhere else. There are new providers in our area. New clinics and rehab facilities pop up all the time. But regardless of the convenience factor a closer clinic may offer, we know Gillette is the best place for our son. The care and exceptional services we receive make the trip a no-brainer! Thank you Gillette for taking such great care of us!

Editor's note: Become a fan of the Cerebral Palsy Resource Group on Facebook to connect with others and recieve support from the cerebral palsy community.

My Gillette Story by Mary Barsness

Posted On: 10/30/2014

On July 7, 2014, our 14-year-old son, Willi, fell off his longboard in the neighborhood. (A longboard is a type of skateboard that’s longer and faster than most boards.) What followed was the kind of night that parents fear. Willi had not been wearing a helmet. Despite no external injuries, he had cracked his skull, and his brain was bleeding in three places. Debbie Song, M.D., a pediatric neurosurgeon at Gillette, performed an emergency craniotomy that night, and Willi was admitted into Gillette’s Pediatric Intensive Care Unit (PICU).

Those first few days were full of uncertainty and fear. Watching the doctors and nurses care for him in such an acute situation was amazing to us. They were consistently calm, respectful and efficient. And it wasn’t just Willi they were taking care of either. They made sure Willi’s father and I were eating and drinking, and they encouraged us to sleep. They were helping us manage our mental and physical health so that we could be as strong as possible for Willi. The nurses and doctors spent so much time answering our questions and comforting us. Never did we feel like anyone was rushing us, or bothered by our constant need for reassurance and comfort.

As we were working to wrap our minds around what had happened many staff members from Gillette’s well-oiled team came by to let us know what they had set up for us. Child Life helped us organize a time for Willi’s friends to come up to the hospital so they could be together and make cards for him. They also helped us navigate this new terrain with Willi’s little sisters. They gave us bears and coloring books to give the girls when they came to see him, as well as fantastic advice about how to get them ready for their first visit.

We were given a room at Ronald McDonald house that we used to rotate family through for naps and showers. We had hot, delicious meals provided by amazing volunteers. We met a social worker who helped us navigate all of the new information. She was always there for us when the new questions popped up, and she guided us through our stay in the PICU and our transition over to the rehab unit. We never asked for these services. In truth, we didn’t know they existed. Gillette anticipated our needs at every turn.

After a while, our friends and families had to go back to their children, their towns and their jobs. It was scary to think of being there “alone,” but we never were. I’m not sure when it happened, but it seemed all along that everyone at Gillette knew us and was part of the team taking care of our whole family. From the staff who always came in so respectfully to clean Willi’s room, to the desk managers at Ronald McDonald, everyone always asked how we were doing. Sometimes they got more than they bargained for, and even then, they would spend time reassuring us. For weeks, people hugged us and shared our joys and fears.

How do you say thank you to the doctors who saved your child’s life? How could we ever explain how much it meant that people said hello, hugged us without reservation when we needed it, and laughed with us in those impossibly amazing moments? Their openness to us made us feel safe in a time when nothing felt OK.

Daily we see people raising money for various charities that help people in crisis. I have thrown my change in the bucket in the drive-thru window for years to give to Gillette fundraisers, but not once did I ever consider I may someday be using those services. As you walk around Gillette, you see all the plaques of donors and fundraisers who raised money to offer these services and amazing facilities. By giving to Gillette, so many people have helped us through an event we never planned for. We are so grateful for all of the supports that Gillette has in place for the life’s unpredictable moments.

Willi is home and attending school full time. We call his recovery a miracle. We know it was a miracle carried out by many hands.

Pictured: Willi with Debbie Song, M.D. in Gillette's rehab unit and Willi with mom and dad.


Meet Us Monday- Ike Woodruff, Casting Technician

Posted On: 10/10/2014

1. What is your position and role at Gillette? I am a ortho technician in the casting room at Gillette Children’s Specialty Healthcare.

2. Do you have a favorite Gillette story or memory? I casted a young lady for over a year and had the privilege of seeing her wear shoes for the first time in her life and she was 18-years-old at the time.

3. What are some of your hobbies outside of work? I like to draw and paint. I am also a huge Packer fan.

4. Do you have any children or pets? I have three daughters, two rabbits and a fish.

5. If you could travel anywhere, where would you go? I’d go to Santorini Greece or Italy.

6. What is one fun fact about you? I am a total Sci-Fi nerd!

My Gillette Story by Heather Wiberg, Westin’s Mom

Posted On: 09/09/2014

How would you describe your child to someone who hasn't met him or her?

Westin is a wild and fun-loving two-and-a-half year old who is full of life. He enjoys playing outside in his sandbox or driving his car. He also enjoys the zoo, drawing with chalk and helping his grandma in the garden.

How did your family come to find out about Gillette?
Westin was prenatally diagnosed with spina bifida and bilateral clubfoot at 20 weeks. After talking to other families of children with spina bifida, we found out about Gillette Children’s Specialty Healthcare from those families who were receiving their medical care there.  Westin is seen at Gillette’s spina bifida clinic in which he is evaluated by a physical therapist, a physical medicine and rehabilitation physician, a urologist, a neurosurgeon, and an orthopedic surgeon. He also has renal ultrasounds to continue to monitor the health of his bladder and kidneys.

What has your experience at Gillette been like for your child and family?
Our experience at Gillette had been amazing! Everyone is so friendly, helpful and knowledgeable. While everyone on the staff is great, we especially like working with Dr. David Vandersteen.  Because bowel/bladder management is something that Westin will deal with throughout his lifetime, I feel that this relationship is extremely important.

As an out-of-state family, why do you make the long drive so that Westin can receive care at Gillette?
When we received Westin’s diagnosis, we made a promise to him that we would always get him the best care possible. While Westin wasn't born at Gillette, we soon realized there had to be something better out there and that is what we found in Gillette.  When it comes to a diagnosis such as Westin’s, it is so important for everyone to be on the same page and have the same plan.  We choose to travel three hours for Westin’s appointments because we know he is receiving the best care at Gillette. As a parent that feeling is priceless. 

Why does Westin make you proud?
He is such a strong little boy. In his short little life he has been through so much and he does it all with a smile on his face. He doesn't let his disability define who he is.

My Gillette Story by Whitney Feidt, Brynn’s Mom

Posted On: 06/05/2014

On August 23, 2013, the first glimpse of our daughter Brynn brought tears of love and worry. To our complete surprise, Brynn was born with a unilateral complete cleft lip and palate. As we held our sweet girl, our hearts overflowed with emotions. We were finally had the baby we had dreamed of—but we questioned what life was going to be like for her.  

Sitting in the hospital room with Brynn wasn’t what I had thought it would be like or what I had planned on. I didn’t want visitors, I didn’t know what to tell people when they asked, and I didn’t want to share the first photos of my baby girl. To us she was beautiful and perfect. But the thought of what others would think consumed me with worry and anxiety.

The first week at home was very challenging as we battled feeding issues. At ten days old, Brynn had her first appointment with a wonderful team of doctors at Gillette Children’s Specialty Healthcare. The day was filled with countless appointments. It was a long, emotional day and we were overload with information but we were willing to do whatever it took. In the end, all of our questions and worries were put to ease.

We spent countless hours at Gillette with Brynn during her first six months preparing her for surgery. We went to our weekly orthodontic appointments with Cheryl Anderson-Cermin, D.D.S to address a number of issues. This included being fitted for the Gillette OrthoCleft® retainer, a presurgical device that results in improved outcomes when worn in the months before surgery.  We also saw a feeding nurse, an audiologist, and an ear, nose and throat (ENT) specialist.  In December, 2013, pediatric craniofacial surgeon Robert Wood, M.D. performed Brynn’s lip repair surgery and did an incredible job. I knew then that all the time, stress and appointments were worth every second.

Although Brynn’s journey was overwhelming at times, it led us to a beautiful destination. We created Brynn’s Smile Box Foundation in the hopes that we can help other families whose babies are born with a cleft lip or palate. Brynn’s Smile Box gives families a convenient box to hold all the supplies needed while their child is using an OrthoCleft retainer, along with a flashlight, scissors, toothbrush and a gift card to Gingko Café, which is located right inside Gillette. We can’t wait to see what the future has in store for Brynn’s Smile Box!

My Gillette Story by Emilie Anderson, Nolan’s Mom

Posted On: 05/14/2014

Nolan's FamilyNolan is our 6-year-old energizer bunny. He is outgoing, loving and has as much energy as 10 people. His big blue eyes instantly draw you in and his enduring personality ensures that people remember Nolan long after he leaves a room.

A couple of years ago Nolan started having behavioral issues paired with leg and back pain. After being pushed from one doctor to another, none of whom could find anything wrong with Nolan, I finally asked for a referral to see a neurologist at Gillette Children’s Specialty Healthcare. We were referred to Jennifer Maytum, a pediatric nurse practitioner specializing in neurology.   

Jennifer was amazing. I cried as I told her of our year-long struggle, and that I knew something was wrong with my child, but that no one would listen. She said she would listen and she did. She scheduled Nolan to have a sleep study and an MRI which showed that he had Chiari Malformation and a tethered spinal cord. Finally an answer was found for my child!

Following that appointment, we received a referral to Dr. Peter Kim, a pediatric neurosurgeon who has been my son’s life saver. This past December, he operated on Nolan and released his tethered spinal cord and performed posterior fossa decompression surgery for Nolan’s Chiari Malformation. About a week after the surgery Nolan developed hydrocephalus. Dr. Kim immediately implanted a ventriculoperitoneal shunt to save his life.

Dr. Kim has been nothing but the best, and I wouldn’t trust my child with anyone but him and the Gillette Children’s team! I thank God every day that places like this exist for sick kids and their families. We are so lucky to live close to a facility as amazing as Gillette that makes these terrifying experiences a little easier to live through. Everyone from the front desk staff to the nurses to the surgeons to the people that work at the coffee shop are all absolutely wonderful.

My favorite memory from Gillette is all the alone time I got to spend with Nolan and all the fun and snuggles we got to share. The nurses and doctors at Gillette make it possible for you as a parent to totally be there for your child. You don’t have to worry about anything, and they make it so you are able to do everything you need to make your child happy and comfortable.

We are so proud of Nolan. He has taken this all in stride and has kept his head up and his personality through all of it. He never let any of this slow him down and he gets stronger every day!

My Gillette Story by Megan Hoelzel, Elaina’s Mom

Posted On: 03/27/2014

Upon first meeting our three-year-old daughter Elaina, it would never occur to you she has juvenile arthritis. All you see is an active, imaginative, and determined three-year-old little girl that will not let anything stand in the way of keeping up with her six-year-old brother, Zach. Anything he does she wants to do too. She refuses to be left out of anything, stomping her foot and saying “me too! ME TOO!” 

Our juvenile arthritis journey starts at Elaina’s two-year well-child visit in November of 2012 with a swollen right index finger. We thought it could be from her sucking on her fingers because we took her pacifier away. Then, a few months later, her right knee became so inflamed and swollen she limped and no longer wanted to walk.  We continued to look for answers with Elaina’s pediatrician, running blood tests, physical exams, and x-rays to discover the root cause of the inflammation and pain she was experiencing. It pained my husband Dave and I to see our active little girl preferring to sit things out and watch because she was in pain.

In June 2013, we were connected with Gillette Children’s Specialty Healthcare to see a pediatric rheumatologist. Prior to our appointment, Dr. Richard Vehe and his team reviewed and evaluated Elaina’s case. As a parent, I was so appreciative this was conducted “off-line” without my having to bring Elaina into the office just to see if she needed to see a rheumatologist. It’s not always a pleasant adventure bringing a two-year-old to see the doctor.

Elaina’s first appointment at Gillette blew me away. As we all sat on the floor of the evaluation room, enjoying a tea party with Elaina and her doll, Dr. Vehe and Nurse Patty explained her diagnosis of persistent oligoarthritis and what this meant for our little girl going forward.  It was a lot to take in. They answered all of our questions – and we had many after our online searches about juvenile arthritis. Just so you know, Dr. Google was wrong – kids do not grow out of juvenile arthritis. Dang it! 

They explained juvenile arthritis is an autoimmune disease. Our daughter’s own immune system, the thing that is supposed to keep her healthy and safe from disease, is actually malfunctioning and mistaking her joints as the enemy and attacking them; leading to swollen, painful joints and Elaina saying with outstretched arms, “Mommy knee owie, carry me! UP!”

They walked us through the various treatment options to reduce the swelling in Elaina’s joints. Believe it or not, the treatment for juvenile arthritis can involve some pretty hard core medications. Some are the same ones used for chemotherapy (but in lower doses). Another common treatment is steroid injections directly into the affected joint(s). Together we worked out a treatment plan of approach for Elaina, and Dr. Vehe and his team connected us with valuable resources and support in the community so we knew we were not alone.

We are now eight months into our journey with Gillette; Elaina is relatively pain free and we are hopefully on the road to remission. It is very apparent to me that Dr. Vehe and his team truly care and get to know their patients and families. Our family walked in the Juvenile Arthritis March (JAM) on March 1, 2014 and we saw Nurse Patty – she knew who we were, and there were no charts or reminders to queue her. You need to remember that Dr. Vehe, Nurse Patty, and their team see kids from all over Minnesota as there are only pediatric rheumatologists in Minneapolis/St. Paul and Rochester. 

For Nurse Patty to remember Elaina, my husband, and I and her excitement to meet Zach, outside of the clinic setting, warms my heart and tells me we are truly part of the Gillette family.  



My Gillette Story by Melanie Hendrickson, Lincoln’s mom

Posted On: 03/11/2014

How would you describe Lincoln to someone who hasn't met him? Lincoln is a sweet little boy. He smiles all the time and is a very happy. He loves to laugh, really hard, and his laugh is contagious! He is also very determined. He works hard despite his challenges. Lincoln has a look in his eye that melts your heart. He is a gift that teaches others how to love.

What are Lincoln's favorite thing(s) to do? Read books, listen to music (mostly country!) swim, knock things over, play with other kids, and go for walks outside.

What is Lincoln’s medical condition? Lincoln has spastic quadriplegic cerebral palsy, epilepsy, cortical vision impairment, global developmental delays and hypoxic-ischemic encephalopathy, or HIE (an injury to his brain caused by lack of oxygen at birth). 

How did your family come to find out about Gillette? Several Gillette neurologists, one of which included Dr. Timothy Feyma, visited Lincoln in the NICU after his birth to evaluate his MRI, CT scans and EEGs. That is when we were given Lincoln’s “news” which was the start of our journey. After his discharge from the NICU, Lincoln has been followed closely by his Gillette care team of doctors, seating specialists, and therapists.

What treatments and services has Lincoln received at Gillette? Lincoln has visited Gillette for a variety of services, including neurodiagnostics, neurology and rehabilitation medicine appointments, hip X-Rays, rehabilitation therapies including physical, occupational and speech therapy, assistive technology, and injections of botulinum toxin (Botox) and Pheno to address his spasticity (overly tight muscles). He also spent a few days in the hospital after developing infantile spasms (seizures) and received treatments of Adrenocorticotropic hormone (ACTH) injections.

What has your experience at Gillette been like for Lincoln and your family? Words cannot express how grateful we are to all Gillette staff.  The doctors, therapists, nurses, EEG technicians, and receptionists have helped Lincoln tremendously. They have shared with us news that a parent dreads; news that broke our hearts. They have also lifted us up during those tough times and given us hope. Lincoln always receives top notch care at Gillette! We have complete trust in all of his doctors and they continue to help Lincoln reach his full potential.

Does your child have a favorite doctor, nurse, therapist or other caregiver? Lincoln has many favorites!  Some include Dr. Beverly Wical (pediatric neurologist), Stephanie (physical therapist), Jennifer (speech therapist), Kathy (occupational therapist), Bill (orthotist), Brian (seating and adaptive equipment),  and Tina (EEG technician). They are ALL FABULOUS! TRUE ANGELS!

What about your child makes you most proud? Lincoln is a little warrior. He works very hard and will not give up despite all of his challenges.  He is happy and teaches those around him what is truly important in life.

Note: Sadly, Lincoln passed away in August 2014.

My Gillette Story by Shelley Potter

Posted On: 02/18/2014

Alivia is a happy 4-year-old who is spunky and determined. Livie loves and responds to all types of music. She hears a song one day and will be singing it the next. She recently has been plucking out songs on the keyboard by ear. Livie really enjoys her iPad, her early childhood class, and her grandparents.  We are so proud of all the obstacles she had faced and conquered. She shows true courage and determination.  

Livie was born with many congenital anomalies.  She has hydrocephalus, absent radius bones on both arms, scoliosis, cleft lip and palate, and mild kidney issues.  Livie and her twin brother were born at a local children's hospital where she was admitted into the NICU.  I was so impressed at how many doctors were coming in to see my Livie; doctors from Gillette Children’s Specialty Healthcare were already coming to assess her and talk about follow up plans. I remember being so thankful for their knowledge and their ability to help my daughter.  

When Livie was just two days old, Dr. Michael Partington placed a VP shunt to treat her hydrocephalus. I remember looking to him with concern and he said to me, "It will be okay mom, I will take care of her, don't worry." He was right—and from then on, I have trusted him completely with my little girl.  Dr. Ann Van Heest has also seen Livie since she was born. She has performed multiple surgeries on her hands and arms to help her establish full function.  She truly has Livie's best interest at heart. Dr. John Lonstein and most recently Dr. Tenner Guillaume have been wonderful in directing care for her scoliosis. Dr. Guillaume was very sincere and encouraging to a broken down mama at our last appointment. It means so much when our team at Gillette not only supports the patient, but also the whole family.  

Gillette’s Assistive Technology department has been wonderful. Livie dislikes going in there but we know that ultimately, all of her bracing and adjusting will improve her quality of life.  She has also had a CranioCap, multiple wrist/hand braces, and currently has a back brace for her scoliosis.  She has had many X-rays, CT scans, and MRIs. Gillette’s imaging department is absolutely amazing!  

We look forward to coming to Gillette not only because of the incredible staff, but also for the amazing volunteers and activities they have available for the kids. We love to see what the craft of the day will be. It takes Livie's mind off of her appointments and focuses it on something fun and interactive. Livie's brothers also enjoy the many actives available while waiting for their “sissy” to finish her appointments. As a mother of a special needs child, I can't begin to explain how wonderful it is to have such an amazing hospital and clinic so close to home. We’ve been blessed with knowledgeable doctors and specialists to help our little Alivia thrive, and for that we say thank you Gillette Children’s Specialty Healthcare!


My Gillette Story by Becky Miller

Posted On: 01/08/2014

When Connor was born prematurely at 35 weeks, it was discovered that a blood clot had formed in his upper arm, leaving him with severe muscle, nerve and skin damage. Originally, doctors thought amputation was likely—but were then able to heal his arm so that a skin graft could be performed at Gillette Children’s Specialty Healthcare. The skin graft was a resounding success!  Conner’s pain levels decreased dramatically and he was able to finally begin experiencing life. Read more about Connor below.

How would you describe Connor to someone that hasn't met him?
Connor is a happy, energetic and strong 8-month-old. We are often told that he is “the happiest baby in the world” by those who help care for him.  He has a genuine passion for life that is most notable when being entertained by his big brother, Parker.  Nothing in the world can bring about belly laughs and smiles the way that his big brother can.

What are Connor's favorite things to do?
Connor adores watching his big brother play. Whether wrestling with Daddy, playing with (loud!) toys or reading books, Connor always finds a way to tell us that he wants to participate in the fun!  The joy on Connor’s face when he sees his big brother cannot be described in words.  Connor also enjoys his Jumperoo so much that we often find him trying to “jump” during other activities.  Connor also thinks that toys that shake, make noise and/or light up are pretty amazing!  His favorite toy is his “Bat & Wobble Penguin.”

What is your Connor's medical condition?
Connor was born prematurely at 35 weeks as a result of pregnancy complications.  Upon birth, it was discovered that Connor had an arterial blood clot that had formed in his upper arm, due in part to a genetic clotting disorder called Factor V Leiden.  Doctors were unsure exactly when the clot formed, but they believe it was present for several weeks prior to birth.  As a result, blood flow to Connor’s lower arm and hand was almost entirely restricted, leaving him with severe muscle, nerve and skin damage.

How did your family find out about Gillette Children's Specialty Healthcare?
Several Gillette surgeons were involved in managing Connor’s care while he was in the NICU.  Initially, the team of specialists following his case thought amputation was likely.  However, the team caring for Connor was miraculously able to heal his arm to a point that a skin graft could be performed. We were referred to Gillette for Connor’s skin graft and were told it was THE best place to be for the type of care that he required.  After spending the first month of his life in the NICU, Connor was admitted to Gillette for a skin graft. The graft was completed by Dr. Robert Wood when Connor was just over 1 month old and it was a resounding success.  His pain levels decreased dramatically and he was able to finally begin experiencing life!

What kinds of treatments and services has Connor received at Gillette?
Following Connor’s graft, mobility and use of his left arm from the shoulder down remained extremely limited.  In the months since his surgery, Connor has been under the care of Dr. Wood, Dr. Ann VanHeest and the amazing occupational therapy and physical therapy teams in rehabilitation therapies.  He is working with his physical therapists to correct a mild case of plagiocephaly and torticollis that were a result of him relying heavily on the right side of his body due to his injury. His occupational therapy appointments have focused on regaining range-of-motion and use of his left arm and hand.

What has your experience at Gillette been like for Connor and your family?
The surgeons that Connor has seen have done a great job managing his care.  The OT and PT team members have been friendly, caring and honest with us throughout Connor’s journey.  We are grateful that his young age has not been a limiting factor in the types of treatment that Connor can receive – splinting has been a big part of Connor’s therapy and it has proven to be a challenge for such a small arm/hand.  Through our challenges, the OT team has listened to our struggles and concerns with compassion and has always worked to find a way to make the rehabilitation process as easy and painless as possible – for both Connor as well as Mom and Dad 

Does Connor have a favorite doctor, nurse, therapist or other caregiver?
Connor adores his OTs (Lindsey A., Alyssa & Alexandria) and PTs (Michelle and Lindsay) – they are always able to bring out a ton of smiles from him during his therapy appointments!

What about Connor makes you most proud?
Connor is a fighter in every sense of the word – he has overcome so many obstacles in his short life.  While he is still too small to tell us in his own words, Connor’s non-verbals indicate that he is stubborn, persistent and driven. He has already, and will continue to, overcome any obstacles that stand in his way!

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