September 30th, 2019 – Olivia Lautzenhiser

Olivia was born nine days after her due date in a small community hospital in Angola, Indiana.  She only weighed five pounds two ounces even though she was a full-term (overdue!) baby. 

When she was three hours old, she was taken by ambulance to a hospital in Fort Wayne, Indiana because our small hospital wasn’t equipped to take care of her.  She had a collapsed lung and was having trouble breathing. 

Sixteen hours after her birth, I was in a car on my way to the hospital where she was staying.  My husband was already there.  She was in the NICU, hooked up to monitors.  She was being given antibiotics via IV and she was beautiful.  She had a dimple in her chin and her right cheek.  She was feisty, she kept kicking her blankets off her legs.  She also had the sweetest, tiniest little cry.  She sounded like a kitten. 

She was finally released from Lutheran Hospital when she was eleven days old.  She came home on an apnea and heart monitor.  She came home and cried for the next six months.  She was finally diagnosed with reflux at four months old, at which point she only weighed ten pounds.  We started her on Zantac for the reflux and after two months on the medicine, she was like a new baby.  But she was still behind. 

She was floppy.  At nine months old, when most babies are sitting up and even crawling, Olivia couldn’t even lift her head.  I asked her pediatrician for an MRI.  I wanted to rule out CP.  The MRI came back fine.  We were told she had a beautiful brain. 

I kept looking because I knew something was wrong.  Our doctor was great at diagnosing ear infection or strep but he wasn’t very proactive about helping me with Olivia.  He kept telling me she was just delayed, that she’d catch up. 

I found a syndrome when she was about ten months old.  It fit so many of her symptoms.  She had low muscle tone, she had a cat cry at birth, she was globally delayed.  I mentioned this syndrome to her pediatrician and he told me there was no way she had this syndrome because she was too beautiful.  Yes.  He said that. 

When Olivia was a year old, I gave up on finding a diagnosis for her delays and asked for a referral to First Steps, Indiana’s early intervention program.  Olivia qualified for physical therapy, occupational therapy, speech therapy and developmental therapy. 

She finally started crawling at 17 months.  But at her two year check up with her regular pediatrician, I asked for a referral to Riley Hospital for Children.  Olivia still wasn’t walking and I worried something was really wrong with her.   

We met with Dr. Stanley, a developmental pediatrician at Riley when Olivia was two years and three months old.  This doctor was amazing.  She listened to me.  She checked my little girl and agreed, “There is something wrong with this baby.” 

When I mentioned that syndrome I’d found way back when Olivia was ten months old, Dr. Stanley said, “I doubt she has it.  She doesn’t have the typical facial features.  But let’s test her just to rule it out.” 

Two weeks later, the results were in.  Olivia has 5p- syndrome, also known as Cri du Chat.  This was the syndrome I’d found and suggested to her regular pediatrician, the one that Olivia is ‘too pretty’ to have.   

She’s missing part of her fifth chromosome.  She’s still got low muscle tone but she does gymnastics.  She’s got some processing delays but she’s doing amazingly well.  We met with Dr. Stanley just this past May and got a clean bill of health.  Olivia has had scans of her heart, her kidneys and her brain.  She’s perfect.  She’s doing what we all do just with less DNA.  She amazes me every single day and I thank Dr. Stanley and Riley hospital for Children for saving my sanity.  They treated me and Olivia like we mattered, like we were more than just a patient number. 

I thank all of you for all that you do to raise money for this amazing organization and for making these kids feel so special each time you encounter them.

September 22nd, 2019- Bryson Faus

Brian and I were married in 2012 and just a few short months later became pregnant with our first child. I had a pretty typical pregnancy, with the exception of finding out that our son had bi-lateral hydronephrosis (inflammation of the kidneys) about 6 months into the pregnancy. We had a few extra ultrasounds and were seen by a specialist a few time but we were told that the hydronephrosis could very well resolve on its own once he was born. Because of the hydro though, I was induced at 38 weeks and Bryson Kenneth Faus was born on March 5th, 2013 at about 9:15pm.  

He was perfect! However, our world was turned upside down about 12 hours later when we found out the next morning that something was wrong with his little heart. The family doctor who came to do his newborn checkup heard a heart murmur. Although murmurs are not uncommon in newborns, since he already knew about the hydro and was planning to order an ultrasound of Bryson’s kidney’s he decided to also order an echocardiogram (ultrasound of the heart) just to be safe. The echo confirmed that Bryson had been born with multiple congenital heart defects and he was immediately life-lined from Dupont Hospital in Fort Wayne down to Riley Children’s Hospital.  

Once Brian and I arrived at Riley and were able to see Bryon in the NICU, we were met with a handful of doctors and medical staff. Riley performed another echo and we were informed that Bryson had an Interrupted Aortic Arch (the main blood vessel which blood flows to the body from the heart was not connected), Aortic Valve Stenosis (the valve leading to the aortic arch was extremely small), a VERY large VSD (essentially, the wall between Bryson’s left and right ventricles was almost non-existent) and an ASD (a hole between the two atriums). Bryson spent the next 5 days in the Riley NICU connected to IVs and medlines going into his belly button, which helped make sure a vital vessel remained open to allow blood flow to the lower half of his body. At not even 6 days old, Bryson underwent his first open heart surgery, the Norwood Procedure. He remained at Riley until he was about 3.5 weeks old. He spent time in the PICU and then the Riley Heart Center. While there, Bryson was also referred to a Riley urologist who confirmed that the hydro was worse then we originally though. He came home on 6 different meds, supplemental oxygen, an ng feeding tube, and on a heart monitor 24/7. 

Without continuing for another 2 days explaining everything that Bryson has been through in his short life, I will simply end with this: Bryson is now 6 years old and has had countless clinic visits, numberous tests, multiple inpatient stays and a total of 10 procedures which included: 2 cardiac catheterizations, 2 ureteral stent placement procedures (total of 3 stents), a g-tube placement, a 2nd open heart surgery knows as the Rastelli procedure, ureteral stent removal, and a ureteral re-implantation. Our hope is that at some point he will no longer need to be following by urology, but unfortunately, Bryson will always be a heart patient and need to be followed by cardiology throughout his life.  

Although Bryson has been through more in his 6 years than most people have to endure in their entire life, he is still the happiest, silliest, sweetest, most energetic little guy I have ever known. He is now g-tube free, only on 2 heart meds and a propholactic antibiotic to protect against UTIs, completely off oxygen and no longer requires a heart monitor.  

We will never be able to thank everyone at Riley enough for what they have done for Bryson and our family. From our first, terrifying day there we have known that he was in the best possible care and we have trusted his medical team 110%. Because of Riley, Bryson was given a fighting chance. Without their intervention, there is no doubt that Bryson would not be with us today. The nurses at Riley are truly gifted and show such care and compassion to each of their patients.  

Bryson has grown to know and love the ‘red shirts’ (except when they have to poke him, he’s not always a fan then but quickly forgives them). He has had the same echo tech, Amy, since our first clinical visit when he was 1 month old and we have all grown to love and adore her! Not only has the Riley team provided superior care for Bryson, but we have always felt that the nurses and staff strive to care for the family unit as a whole. During the most trying of times, when Bryson was in the NICU and recovering from OHS in the PICU, the nurses always made a note to check on Brian and myself; to make sure we were getting rest and caring for ourselves as well because they knew we would need to be in tip-top shape to care for Bryson on our own once we brought him home. During that first week, his surgeon always made a point to check on me each day because he knew that I had just given birth and been released less than 18 hours later and in a great deal of stress.  

Every staff member at Riley is always willing to answer any and all of our questions (no matter how crazy they may seem) and if they are unable to answer us, they always find someone who can provide the best possible answer.

September 15th, 2019- Sloane Davisson

Sloane and her family are a new Riley Family for PUDM this year. Sloane recently turned 3 years old and enjoys dance, gymnastics, and music. Read about her Riley story as told by her mom below:

“Sloane was diagnosed in November of 2017 with stage 4 bilateral retinoblastoma, advanced cancer in both of her eyes. She was only 15 months old. This particular cancer is very rare, and Riley is the only hospital in Indiana that has a retinoblastoma specialist. Immediately upon diagnosis Sloane underwent further testing which showed us this cancer was caused from a genetic mutation and something that she will live her life with. From November 2017-May 2018, Sloane went through chemotherapy at Riley every 4 weeks. Thursday’s and Friday’s were our chemo days. The summer involved a few trips to NYC for further treatment recommended by her doctor for Sloane’s right eye. Sloane underwent multiple treatments directly to her eyes to treat the cancer on top of chemotherapy. While her tumors behaved well while she was going through chemo, in June of 2018 the cancer started worsening in her left eye. In July of 2018 Sloane had her left eye removed at Riley to keep the cancer from spreading to her brain. While that surgery proved to be no walk in the park, she finally got her new prosthetic eye just before thanksgiving in 2018.  Sloane is in remission now, she is happy and thriving and keeps everyone around her laughing. Sloane goes back to Riley every 3 months for check ups with her oncologist. She also has eye exams under anesthesia every 6-8 weeks with Dr. Plager, her ophthalmologist. These eye exams will be frequent for the next few years as she’s still at a high risk of her cancer coming back until age 5 or 6. Sloane loves her big sister Audrey, loves gymnastics and dancing, and is one of the funniest kids I’ve met. Her spirit is high and we always say cancer never stood a chance against her.”

August 25th, 2019- Faith Amor

Faith was born with no medical problems at all! We started noticing that she was not keeping up with other children her age developmentally by about 6 months of age, which is when our Riley trips began. 

First, she had an MRI, which showed there were problems, but gave us no answer about what the cause could have been. For the next year and a half we would make many trips to Riley to see a developmental pediatrician and neurologist in an effort to help Faith and to determine the cause of her problems. Then, when Faith was 2, we had a surgery at Riley to put in a feeding tube and do more testing. When the test results came back, it was determined that Faith had a mitochondrial disease, also known as “Mito.” It’s a neuromuscular disease where the mitochondria in the cells fail to produce the energy the cell needs to function properly. It affects every child slightly differently depending on severity.  

With Faith, it has affected her ability to walk and talk and function like a normal child should. She can crawl now and pull herself up to stand, but does not walk and has a wheelchair to get around in at school. She does not communicate with words, but definitely communicates to us her needs in other ways. Her favorite thing to do is to play with her brother! Faith has a long Riley road ahead that will include many more doctor visits and therapies. She is very strong at heart and takes everything in stride.  

We appreciate all that Riley has done for us as a family and the support we get at every visit from the doctors to the nursing staff to the lab workers who draw blood for testing. Everyone is so great at Riley!

April 28th, 2019- Hannah Fulford

Hi! My name is Hannah Fulford, and I am from Zionsville, Indiana! I am a congenital heart defect survivor.  I was born in 2004, with four holes in my heart. I had two atrial septal defects and two ventricular septal defects. My breathing was very labored and my heart was enlarged. Because of the holes in my heart, my heart had to work very hard. I was very thin, and I required a feeding tube because I had to eat every four hours-twenty four hours a day. My heart was in congestive heart failure, and I was diagnosed as failure to thrive and I had Hypotonia (low muscle tone). When I was three months old, I was admitted into Riley Hospital and had open heart surgery.  

I go back to Riley yearly for checkups, and I will require more surgery in the future, but I am not worried because the doctors there are great, and thanks to you, and the money your raise advances are made every day! Now I play lacrosse and sing with the Indianapolis Children’s Choir! 

March 24th, 2019- Braden Tamosaitis

Braden and his sister Sierra are both big fans of Dance Marathons. Braden’s journey at Riley began on the day he was born, and it is continuing to this day. Braden will be having hip surgery during the first week of April this year, so keep him and his family in your thoughts. Braden loves attending dance marathons all across the state, and he is one tough kid. Here is his story:

“Hi!  My name is Braden, and I have a pretty cool story if you’d like to read about me! 

I was born in March of 2005, and even before I was born, my parent’s knew that I had so many tough things ahead of me. I was born with Spina Bifida, as well as Hydrocephalus and an Arnold Chiari II malformation.  In other words, things were really complicated from the start!  On top of all that, the doctor’s told my Mom and Dad that I probably wouldn’t even survive birth, and even if I did that I would have very little use of my lower body, and I’d have very little cognitive ability. 

Boy were they wrong!  I like proving the docs wrong whenever I can, and I have had many chances to do just that.  In fact, I was so strong the day I was born, that I had my very first surgery when I was only a few hours old!  Then my second one the very next day!  Since then I have had a lot more surgeries.  They have worked on so many parts of my body, that my Mom and Dad call me Superman, because I am a boy of steel! 

Ever since the day I was born, I have been a Riley Kid.  That means that Riley Hospital is very special to me and my family, because I spend so much time there.  All of my surgeries except one has been there, and I am usually there at least twice a week for therapy.  As a matter of fact, I spend so much time there that I have made more friends than you could imagine!  It’s not just the doctors I like so much, but the nurses, Child Life specialists, receptionists, and even the people that help keep Riley clean!  One of my favorite things to do whenever I am at Riley is to visit the Safety Store… I was even the very first kid to be in the Safety Store after they remodeled it!  I also love when I am wheeling through the halls and I see so many people I know, and I have to say hi to every one of them!  It makes it hard to get to my appointments some times. 

I love the new tower in the hospital, but one of the last surgeries I had to stay there for 37 days!  Of course, my Mom and Dad tell me it’s not so fun being at Riley so long, but I didn’t want to go home at all!  I like staying there because I have so many visitors, and I get room service! 

When I’m not at Riley, I still love to do anything I can that is for Riley!  One of my very favorite things is to go to Dance Marathons!  Dance Marathons are great big parties to raise money for Riley Hospital.  They have them at colleges and high schools!  My very first one was at Ball State University.  I had so much fun that night, and I will never forget it!  My parent’s came with me to share our Riley story, and they planned on only staying for a little bit, not the whole 12 hour marathon.  But, as usual, I had other ideas!  I had a blast with all the college kids playing with me, and my team (the orange one) gave me a great big bag of goodies, and followed me around all night!  I never got tired, even near the end which was at 3:00 the next morning!  They had a rave at the end where they turned off the lights, passed out glow sticks, and turned up the music really loud… IT WAS FUN!!!  I didn’t want to leave at the end when they announced the total of how much they raised for Riley, but my Mom and Dad made me!  When I went back to my kindergarten class at school on Monday, I loved telling my teacher about all my new college friends, and the college rave I went to… she kind of looked at me funny when I said that! 

Since my first one, I have been to lots of Dance Marathons.  They have them all over the place.  I have been to Dance Marathons at Ball State, Butler, Purdue, Indiana University, UIndy, IUPUI, Indiana State, St. Mary’s, and one of my other favorites, Franklin Community High School with my buddy Evan!  In fact, I like Dance Marathons so much and we go to so many, that my Mom and Dad like to tell people that Dance Marathon is my sport! 

During my last stay at Riley, my Mom brought in a beach ball for me to play with.  I had so much fun hitting it all over the room, and it didn’t hurt anything!  I would play with anyone who would hit the ball with me.  It was so much fun, my Dad went to the store and got me a few more, so I could have lots of them in my room to play with.  I would even have the doctors and nurses playing with me when they were supposed to be working!  I would throw the ball at them when they came in the room, and I even tried to throw it at them when they went by my room in the hallway! 

I had so much fun with my beach balls!  One day, I saw one of the other patients on my unit that would pass by my room all the time, and sometimes she would stop and chat with me.  I told my Mom that I wanted to give her one of my beach balls.  The nurses were able to clean the ball and give it to her, so she could have fun too!  I like doing that so much that I wanted to give one to the little boy in the room next to mine too.  Then, I made my dad go to the store and buy lots more beach balls to give to the other kids on my unit at Riley! 

When I finally got home after my surgery, we had a big party at my house.  I invited everyone that came to visit me when I was in the hospital… but I told them they had to bring me beach balls so I could donate them to Riley Hospital for all the other kids!  I wasn’t sure if it would work, but it did and we gathered up almost 150 beach balls for Riley!  I had so much fun doing that, that I told my Mom and Dad I wanted to do it again and again, so they are helping me get more beach balls to donate.  I can’t wait!!!” 

March 10th, 2019- Oliver Gilkison

Oliver, his sister Sofia, and parents Andy and Andrea are one of our local Riley Families who live in West Lafayette. Although he has faced many health obstacles due to mitochondrial myopathy complex one deficiency, he is now 10 years old and likes Star Wars and Minecraft. Here is his story:

Oliver is the Gilkison’s miracle baby.  He was born February 3, 2009. He has surpassed all odds and expectations set before him. Though there were no signs of problems during the pregnancy, Oliver was not breathing upon birth. He was revived, but still suffered from breathing difficulty during his first few weeks of life. While napping, Oliver would stop breathing and turn blue. As the episodes began happening more frequently, Oliver’s pediatrician recommended that he see a pulmonologist at Riley Hospital for Children. 

Upon arriving at the pulmonologists door with our stories of “blue” spells and having a few spells in the office the Dr. sent us off for a sleep study. The sleep study was supposed to last a full 3 hours. After 2 hours they stopped the study and admitted us directly into the PICU. Over the next few days we endured a whirlwind of doctors and theories, but the common thread was that Oliver had obstructive apnea. They did a bronchoscope and determined that he had laryngomalacia, and a few days later he had supraglottoplasty. Oliver showed improvement in many ways.  However, a week after the supraglottoplasty surgery he had a follow up sleep study, and to our surprise he still had numerous apneas.  That was the first time the tracheotomy or trach was mentioned. They did see that he was improving in person even though he was declining on paper, and decided that we could go home for the weekend with the promise to return the following Monday for another sleep study.  

We were confident Oliver was making a turn around. We were wrong!  His sleep study got worse.  Oliver had more obstructions, longer apneas, and higher CO2 levels.  Another concern was that he was not hyperventilating despite his elevated CO2 levels. Oliver was immediately admitted, on March 16, 2009, since it appeared that Oliver was asphyxiating himself. The doctors ran several tests to look for causes of the apneas and obstructions other than floppy airway.  The geneticists and metabolic doctors told us they didn’t see anything too out of the ordinary, but that they would be watching. Neurology thought that it wasn’t brain related and the pulmonary team thought that it might be a genetic condition called Ondine’s curse. The true problem was that Oliver had serious issues and no proponent to point at.  During Oliver’s stay we watched his condition worsen. The rule of thumb is that when a nurse walks fast, you worry; when they run, you panic. He was making the nurses run as he frequently set off his alarms.  

After doing one last consultation with all the different departments and exhausting all of our options, we agreed to the tracheostomy. Oliver had his tracheotomy at 1:30pm on April 8th.  A few hours after his surgery, he was breathing on his own and feeding normally.  Finally, we thought problem solved. This was only the beginning of the next chapter in our story. The next evening after the trach was placed; Andy was at Oliver’s bedside and noticed he wasn’t acting normal.  A few minutes later Oliver had a seizure and stopped breathing for 20 minutes. Fortunately, the nurses were able to stabilize him by putting him on the ventilator (April 9, 2009).  

This was a major step backwards for us. Oliver let the vent do all the work for about 24 hours until the results of a blood test indicated he was extremely anemic.  Oliver received a blood transfusion that gave his breathing a jump-start. However, his breaths were still very shallow and inefficient. The purpose of the ventilator was to give him bigger more efficient breaths, rather than breathing for him as before. A week after the trach Oliver had a follow up sleep study.  On the positive side of things, he only had a few brief apneas, which allowed the doctors to rule out central apneas. The study also indicated Oliver still had very high carbon dioxide levels, and was breathing very rapidly and in a shallow manner.  As a result of this and the previous events, the doctors told us Oliver would stay on the ventilator for an indeterminate amount of time. Oliver has since been given albuterol, which has brought his carbon dioxide levels down and given him steady strong breaths.   

Oliver was sent home on the ventilator after every test came back negative for why Oliver was experiencing breathing troubles. Because they did not have a diagnosis, they could not give us a prognosis.  Oliver came off of the vent Christmas of 2009!  He had his trach until March of 2010. His stoma had not closed on its own so in the summer of 2011 it was surgically closed.  While in surgery to close the stoma they took a muscle biopsy of his thigh.  This biopsy confirmed that he had mitochondrial myopathy complex one deficiency (Mito: A neuromuscular disease that is progressive in its degeneration.) This then explained all of his breathing problems, and now his autism but even with this diagnosis we do not know all of what is to come for Oliver’s future.  So we move forward blindly only with the knowledge that this is Oli’s journey and lucky are those that can share it with him.

March 3rd, 2019- Kate Malone

Historically, the month of August hasn’t been lucky for the Malone family. Middle brother Eric broke his arm in August 2009, and younger sister Kate was diagnosed with type 1 diabetes in August 2012. 

So, when August 2016 progressed without any emergencies for the West Lafayette family, mom Sara and stepdad Doug were cautiously optimistic. What hadn’t yet become clear was just how tired Kate, then 13, got during back-to-school shopping, or that an infection where she injected her insulin was getting worse.

“We reasoned away all of her symptoms,” Sara recalls. “Kate was tired, but she had a cold. We went to the pediatrician’s office twice that month, we got antibiotics, and things would get better.” 

But when her infection got worse, Kate was taken to urgent care and then to the local emergency room, where doctors ordered her airlifted to Riley Hospital for Children at Indiana University Health. 

“My blood pressure had dropped, and they were concerned about septic shock,” Kate remembers. “It wasn’t until later that we learned if I’d waited until the next morning to see a doctor, I probably wouldn’t be here.” 

At Riley, Kate was diagnosed with the most common type of childhood leukemia. Acute lymphoblastic leukemia causes white blood cells to turn cancerous and multiply rapidly. She began treatment immediately, but the process was complicated by her type 1 diabetes. 

“When a patient is insulin-dependent, like Kate, it makes it very tricky because a lot of the treatment is steroid-based, and that would make her blood glucose go very high,” says Riley Pediatric Hematologist-Oncologist Sandeep Batra, M.D.  

One of Kate’s favorite outlets at Riley was art therapy, a program funded by Riley Children’s Foundation donors. “I think Kate’s natural reaction was to put on a brave face for everyone, but when we worked together, she didn’t need to do that,” says Riley Art Therapist Cassie Dobbs. “She could let loose and maybe be a little sad, because at times, she was.” Dobbs nominated Kate for the Riley Champions program because of her perseverance, and her willingness to speak publicly about her cancer journey in order to help others. 

After a month at Riley, Kate returned home and has continued treatment for two years, catching a few hours of school and dance classes as she was able.   This August finally brought good news for the family. Kate, now 15, returned to school full time, and she’s almost done with treatment. “I’m just super glad test results show I’m in remission,” she says. “I’m ready to get back to everything.” 

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