Inside Gillette Blog


My Gillette Story by Rob Collins, Dad to Cole

Posted On: 02/03/2015

Our family’s journey with epilepsy started in 2007 with an isolated seizure.  Our son Cole, who was just 2 years old at the time, doubled over in early September with a full body seizure.  We had him checked out and thought we were in the clear.  By the time Thanksgiving rolled around, though, Cole was having over 100 seizures per day, of multiple kinds.  We were desperate to get help.  We asked My Gillette Story by Rob Collins, Dad to Colemy brother, Gary, who is a surgeon at Regions Hospital here in St. Paul, for a suggestion.  He told us to go to Gillette Children’s Specialty Healthcare.  We were referred to Dr. Beverly Wical, a pediatric neurologist at Gillette. 

We tried different medications, none of which seemed to work.  Gillette suggested we get a second opinion, which we did.  That doctor from a different facility told us “pad your kitchen floor and get him a helmet.  I’ve seen this many times.  This is as good as it’ll ever get.”  We were devastated.  That was the Friday before Christmas break of 2007.  Dr. Wical was leaving for two weeks and we were scared.  She cleared her schedule that Friday afternoon and met with us for over two hours.  I remember during that meeting she held up her hand and told us that of the patients she has seen with similar severity of seizures, she could count on one hand the number of patients that are functioning at average or above-average levels. 

I know this doesn’t sound like the best of odds with the information we were getting, but it gave us hope that Cole could be one of the five.  She proceeded to tell us that we’d keep trying new combinations of treatments/meds and hopefully we’d find the magic combination that would work for Cole.  The doctors and staff at Gillette worked continuously to find that magic combination. 

While Gillette wasn’t able to give us the answers as to what our future would hold, we left that meeting not feeling hopeless.

We got through Christmas, but Cole was still having seizures.  We were worried about our son, our family, our finances – wondering if we’d be able to pay for Cole’s medical care.  Could we keep our business solvent with one of us having to be with Cole 24/7 and having two other young daughters to care for?  

By the end of January, 2008, Cole was still seizing and meds weren’t helping.  We talked with Gillette about trying the ketogenic diet, a highly specialized diet that can help treat certain types of epilepsy.  They wanted a 120 day commitment.  At that time, 120 days seemed like an eternity. 

My wife Tammy’s father, Merle, had come to all our appointments with us and helped with Cole so both Tammy and I could concentrate on the doctor.  When we got home and said were going to try this high-fat, low carb, low protein, low calorie diet to control seizures, our families said they didn’t see any way that bacon and butter would stop Cole’s My Gillette Story by Rob Collins, Dad to Coleseizures.  But Merle simply said, “They don’t have any other choice.”  And that was it.  We got started on the diet. 

We noticed immediately some clarity.  It took 90 days, but on day 90, Cole went seizure free for a whole day and, essentially, hasn’t looked back. 

Cole has been seizure free for just over six years.  As we were preparing this blog post, we realized that Karri Larson, our Gillette dietician, has approved everything that Cole has eaten over the last six or so years. 

We’ve taken the diet on road trips to Florida, Branson, Texas, Sedona, The Grand Canyon, Yellowstone and Glacier Parks as well as many times to Lutsen on Minnesota’s North Shore.  Cole is now 9 years old and thriving. He is in a partial Spanish Immersion program in Forest Lake Public Schools.  He is in Boy Scouts, likes to camp, hike, play Legos and Skylanders.  He’s active in his church and loves to swim.

Thank you Karri.  Thank you to Shani Norberg, M.D.,Nancy Kammer, M.D., Beverly Wical, M.D. and so many of the Gillette nurses and support staff that have been so helpful and have given us our life back.

 


My Gillette Story by Heather Haigh, Mom to Jackson

Posted On: 12/31/2014

My son, Jackson, was born full term and healthy, weighing 8 pounds, on Halloween 2012. Except for acid reflux that developed shortly after birth, he had no problems—until April 5, 2013. That typical Friday morning changed our lives.

Jackson was unable to keep down any nutrition that day.

He still can’t.

Within a few days, he was admitted to a hospital for dehydration, where he lived on sugar water and IVs for two weeks. He couldn’t keep down even an eyedropper full of formula, breast milk, or anything else. He dropped from the 50th percentile for height and weight to below zero.

He was fighting for his life, and no one knew why.

Even today, his primary condition is a mystery, though Jackson has been diagnosed with 38 secondary conditions. His body rejects saliva, and he can’t live without a feeding tube. We were referred to Gillette Children’s Specialty Healthcare for palliative care in May 2014. We see Scott Schwantes, M.D., and he is absolutely amazing. He has developed a plan to manage Jackson’s pain and improve his quality of life. We can't fix Jackson's conditions, but we can manage them.

Jackson used to have episodes of autonomic neuropathy (also called dysautonomia)—complete with heart-wrenching, full-body nerve pain—up to six times a day. Dysautonomia is a very complex dysfunction of the autonomic nervous system. Jackson’s temperature would swing from 93 to 103 degrees every few minutes. We are now down to six episodes a month on average, and his temperature usually ranges from 94 to 97 degrees.  Gillette understands the condition and is helping us manage it the best that we can.  

We’ve developed a good handle on things, especially compared to what it was like before we began coming to Gillette. I’m forever grateful for the quality of care and depth of discussions that take place during appointments. For example, last summer we saw Marshall Taniguchi, M.D., a pediatric rehabilitation medicine specialist. He was going to assess when Jackson could begin wearing a feeding tube backpack, but he did so much more. He assessed Jackson’s symptoms at the time and referred us to several specialists to help us with many issues. Each specialist looks at the big picture, not solely their own specialty.

That appointment day, Jackson received a helmet to protect his head from his frequent falls. We have since seen urology, neurology, and sleep medicine specialists. Although Jackson is living with machines, and his daily challenges can be severe, he is thriving. He smiles and plays and is a little boy. He laughs, giggles, is learning sign language, and claps every time he does something right.

I make a point of giving Jackson a childhood in between medical life. I refuse to have him remember only the medical aspect of his life, so we try to do a lot of fun things. He learns at his own pace, works hard at therapy, can tell a story with his eyes, and enjoys life to its fullest. One thing we’re trying to live by is the quote above Jackson’s crib: “Let him sleep now, for tomorrow he will move mountains.”

Jackson inspires everyone he meets, including me. Despite countless tests, procedures, lab draws, doctor appointments and therapies, Jackson is the happiest little boy ever.  Our journey isn’t over, but we are so blessed. I thank God every day for the angels he sent to us, including everyone at Gillette. My son wouldn’t be where he is without them. I can't thank you all enough.  We have a long way to go, but I feel safe under your hands.  

 


My Gillette Story by Stephanie Petersen, Mom to Sadie

Posted On: 12/23/2014

My Gillette Story by Stephanie Loeffler, Mom to Sadie Sadie blessed us in this world on November 12, 2012 – three weeks before her due date. What we thought was going to be another normal, easy delivery, ended up being an emergency cesarean section. At birth, Sadie was small for her age, suffered from an enlarged liver, heart, and spleen, and had calcifications throughout her brain. A few days after her birth we found out that the cause of all of this was cytomegalovirus (CMV), a virus that I had contracted while I had been pregnant. We were devastated by the news. Hearing that our little girl could be deaf, never walk or talk, and would probably have seizures was horrific news to swallow.

After 3 weeks in the NICU we got to take our sweet little girl home. When Sadie was 20 months old, we were introduced to Gillette Children’s Specialty Healthcare during one of her routine physical therapy appointments. Her therapist noticed that when Sadie used her gait trainer to walk, her left foot turned and started to drag more and more. Together we thought braces would be a good option. Her recommendation was to go to Gillette and that’s where we met the amazing Nanette Aldahondo, M.D. She would be the one to diagnose Sadie with diplegic spastic cerebral palsy.

From that very first visit we learned so much about Sadie's diagnosis and where we were going to go from there. Sadie was fitted for her braces that My Gillette Story by Stephanie Loeffler, Mom to Sadie same day and within a month she had them. We also planned to have Sadie see Dr. Aldahondo a few months later for botulinum toxin injections. Between Sadie’s AFO (ankle-foot orthoses) fitting and her botulinum toxin  appointment, she began walking on her own! At her botulinum toxin appointment, Dr. Aldahondo was so pleased with Sadie's progress she suggested not doing the injections that time and we agreed! She thought we were going to be upset that she wasn't going to do them, but in fact we were very pleased. We were pleased that Dr. Aldahondo took the time to  explain the reasoning why and the effects it could have on Sadie just learning to walk.

We have another appointment in January to check Sadie's progress and we will determine if botulinum toxin injections are needed at that time. Sadie is a very active child and she tries to do everything her older siblings do. She is starting to run and even though she stumbles and falls quite a bit, she gets right back up and runs more. She is a determined little girl—a fighter!  We have been so grateful for the wonderful care that our little girl has received from Gillette.


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.  


 

 


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