March 3, 2014 – Braden Tamosaitis

Our Riley Kid of the week is Braden Tamosaitis! A lot of exciting things have been going on in Braden’s life this past year. He is also getting ready to celebrate his birthday on March 10th! Braden will be turning 9 so be sure to wish him a happy birthday. In 2013, Braden was one of 50 Children’s Miracle Network Champions and represented the state of Indiana, which is so incredible! Braden also recently just had the opportunity to sign with the UIndy men’s soccer team! Braden will have the opportunity to participate in as many team activities as he can and the student-athletes are so excited about getting to know him better. During one of his stays at Riley, Braden had an amazing idea of a way to give back to the hospital that has given so much to him. Braden tells a little bit about his efforts below:


“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!!!”

As you can see, Riley Hospital means a lot to Braden. He also shares his Riley story with us:

“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! Even though I am only seven years old, I have already had fifteen 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!”


Be sure to wish Braden a very happy 9th birthday!

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February 24, 2014 – Braedon Upchurch

Our first Riley Kid of the Week for this year is Braedon Upchurch! Braedon absolutely loves football as well as running. He enjoys playing basketball and is thinking about trying wrestling. He loves to play video games. Minecraft and Skylander are his favorite! As you can see in the pictures below, Braedon had a great time at PUDM 2013 and we are all so excited to have him back at the marathon this year! His story from his family is provided below:


At 14 weeks into my pregnancy, I found out that I have having mono amniotic twins. This means that I was having identical baby boys, however they were both in the same amniotic sac. This rare condition meant that there was an 85% chance that both boys would die prior to birth due to the possibility of umbilical cord entanglement. At 261⁄2 into my pregnancy, an ultrasound showed that one of the twins heart had stopped beating and had died. I was immediately admitted into the OB ICU unit and placed on a monitor 24/7 to watch the other baby’s heart rate.

At 28 weeks, which is 3 months early, Braedon Upchurch was born via emergency C- section as his heart had begun to slow and then stop beating. He was 2 lbs. 3 oz and 14 inches long. Upon birth, it was diagnosed that Braedon was the recipient of a condition called Twin-to-Twin Transfusion Syndrome (TTTS), which can only happen with identical twins. This syndrome is created when the stronger twin begins to take all the nutrients and blood flow from the placenta and the weaker twin is then deprived of these things. Braedon was the weaker twin and required 3 blood transfusions within the first hours of his life due to extreme anemia. He was immediately transferred to Riley Hospital and placed in the NICU.

During the next 11 weeks, Braedon developed many complications due to his prematurity including a yeast infection in his blood and skin, fungal sepsis, a severe fungal infection in his intestines, dangerously low platelet counts and the detaching of the retinas of his eyes (Retinopathy of Prematurity or ROP). During his stay, he had several more blood transfusions, too many antibiotics and fungal medications to count and X-rays every hour for 4 days. He had surgeries to place central lines into his chest, as his veins were beginning to collapse due to the amount of IVs placed, double hernia surgery and laser eye surgery in both eyes to save his eyesight. We were told that he would probably stay in Riley for 3-6 months with all these complications, however, Braedon was strong and was sent home 11 weeks after he was born, which was 1 week prior to original due date.

The doctors and nurses at Riley never let you give up hope and they support the entire family through all the crisis of having a critically ill child. Not only do they treat the ill child, they take care of the entire family. We will always have a very special place in our heart for Riley Hospital and the doctors and nurses in the NICU. Thanks to the wonderful doctors and nurses at Riley, our miracle boy survived with no long-lasting effects. Braedon is now 11 years old and a perfectly healthy, rambunctious boy. I couldn’t imagine taking my children any place other than Riley as they are, in my opinion, the best place to care for our children!

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November 4, 2013 – Cassi Bacon

Cassi Bacon is a busy nine-year-old girl and loves to be involved!   She enjoys sports and has played soccer, basketball, and volleyball.  She is currently swimming with our local swim club and was recently chosen to be a Student Council Rep for her third grade class.  Having one arm has really not slowed her down much.  She rides her bike with ease and even attempted the zip line at her church camp last summer!   She has had two-prosthesis and is currently in the fitting process to get a new prosthesis with an electric hand.  Her willingness to try new things is an inspiration to us.  She is truly amazing and does not let her physical challenge slow her down.

Cassi was born on August 21, 2004. The pregnancy went very well, and an ultrasound two weeks earlier had shown a baby girl who appeared to be perfectly healthy.   During the late afternoon of August 21, Saturday, I noticed that the baby wasn’t moving around as much as she usually did. We decided to call our doctor and check with him about the recent change.  Thankfully, he was very proactive and suggested that I go to Lafayette Home Hospital for a stress test.  Testing showed that her heart rate was not responding to stimulus as quickly as the doctor would have liked.  He decided that she needed to be delivered as quickly as possible and performed a C-section that night.  She was born around 1:00 am Sunday morning.  My doctor then said “The arm…is she okay?”  When the pediatrician responded, “We’re working on her”, fear gripped me.  Her apgar scores were low, and I knew that was not a good sign either.  She was placed in the NICU and several specialists looked at her.  It’s very difficult to explain what her arm looked like at that point.  Each possible diagnosis was ruled out, and she was transported to Riley Hospital on Monday morning.   The fear and anxiety that my husband and I felt as we watched the Riley Transport Team pull away with our precious baby was overwhelming.  Upon arrival at Riley, she was taken directly to the NICU where there was a team of doctors waiting for us.  It didn’t take long for them to make a diagnosis.  Ultrasounds showed several blood clots had formed in Cassi’s neck area.  The largest of these, had completely stopped the flow of blood to her left arm and the arm tissue was simply dying due to the lack of oxygen.  Once the diagnosis was made, we were told that Cassi would lose her left arm. It was too badly damaged and would have to be amputated.    Hearing that news would seem to be the worst scenario possible, but after the fear of losing our precious little girl, our only questions was,  “When?  Let’s do it and get our baby home.” She came through the surgery fine and was only in recovery for a short time.  The NICU staff was amazed to see us walk back into their unit.  The next challenge came when the bandages came off and we saw her ‘little arm’.   As we prepared to go home, we learned how to change bandages, clean surgical wounds, and give injections.  We were told that Cassi would need daily injections of Lovenox for 6 months so that all the blood clots would be gone. We’ve only needed the surgery services of Riley Hospital once since the amputation, but we are so thankful that we live close to Riley and were able to get the help that we needed for our precious baby girl.  Our family will be forever grateful for the wonderful doctors, nurses, and all the support staff at Riley.

[box]Watch Cassi Bacon’s story[/box]

October 28, 2013 – Maison Kurmay

Age: 6

Born: 5/4/2007

Location: Avon, Indiana

Story: Maison Kurmay is a spunky six year old with enough personality to feed an entire army and an infectious smile that could make even Grumpy crack a grin. He loves to draw, write, and read, and when it comes to dancing, Maison is a natural. He has an older sister Makenna, who is also a Riley kid and participates in PUDM. Because of Makenna’s health conditions, Maison’s mother Traci had various tests conducted on her while she was pregnant with Maison. An amniocentesis test indicated that Maison would have Down syndrome and an inversion in his number 2 chromosome. Not knowing what to expect with these health conditions, Doctors warned Traci that she might lose her baby at any point; however, Traci remained hopeful and positive. Like a miracle, Maison was born on time and weighed 5 pounds 15 pounces. After he was born, Maison was treated at the special care nursery at the University Hospital connected to Riley due to his low heart rate and oxygen needs. He came home a week later on oxygen and eating from a bottle. Over the next few months, Maison underwent sleep studies and monitoring on his oxygen. After a few months he came off the oxygen and continues to lead a healthy life to this day.

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October 21, 2013 – Lexi Burpo

Lexi is a spunky, outgoing, athletic, kind-hearted little girl. She is extremely active and loves to play soccer and do gymnastics! Lexi doesn’t know a stranger, and while she may try to come off as bashful when she first meets someone new, they are sure to be her new best friend within 5 minutes!! Lex is an extreme animal lover and even says she wants to be a zoo keeper when she grows up! Any movie with an animal in it, especially the Buddies movies, are guaranteed to be labeled as her favorites, next to Cinderella that is! Lexi talks about her experience and surgery at Riley Children’s Hospital frequently, even though she was only 2 years old at the time, and understands how much the staff there helped her, especially Dr. Agostino! Because of this, she has grown a love for paying it forward and even has a lemonade stand & bake sale in the works.

In July of 2010, at 2 years old, Lexi literally woke up one day with a large mass under her chin. After nearly three months of testing without any answers, Lexi’s pediatrician & ear, nose, throat specialist referred her to Dr. Michael Agostino at Riley Children’s Hospital. After finally being diagnosed with an unknown bacterial infection, Dr. Agostino and his staff performed life-saving surgery to remove two of Lexi’s lymph nodes and skin, all of which were infected with the bacteria that was taking over Lexi’s tiny body. 3 years later, thanks to the staff at Riley, Lexi is now a healthy and thriving five-year-old little girl!!

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October 7, 2013 – Anna Plake

Anna’s story started when she was a whopping 20 months old. Her mom took her to her pediatrician because she was walking wobbly and limping. She was crying a lot and wanted to be held all the time, which was not at all like Anna. The doctor did some lab tests, but everything came back normal. Anna’s mom knew that she had to be Anna’s voice and advocate, knowing that something was not right. She made another appointment and her second lab results confirmed that she had an autoimmune disease- juvenile arthritis. At the time, the Plake’s were living in Iowa and went to doctors and nurses at the University of Iowa. They discovered that Anna’s arthritis was worse than they had originally thought. She had disease involvement in both of her knees and ankles. She had to wear splints on both of her legs at night due to limited range of motion in both knees. Along with the splints, she had to take daily medications that she did not like because of the taste. However, none of this stopped Anna! She acted as any toddler would’ve- climbing, running, jumping, even walking while wearing her splints.

The worst part for Anna came when she had to start getting regular blood drawn due to the long term use of the medication. She used to hide when it came time for blood draws, but now her anxiety about them has decreased and her knowledge about the disease has increased. Upon moving to Indiana, the Plake’s were worried about Anna’s care. However, all their worries ceased once they found Riley Hospital and Dr. Bowyer. Anna loves Dr. Bowyer and her staff! She even considers going to the doctor a treat!

Anna is now a thriving ten-year-old girl. She eventually developed arthritis in her wrists and finger. She sometimes has troubles pushing buttons, opening doors, and dressing herself, and it sometimes takes her a little longer to physical accomplish things. But none of that has slowed her down! Anna attends Battle Ground Elementary in Lafayette, and loves her friends and teachers there! She swims on a club swim team that has made a huge difference in her functioning and confidence! Anna loves life and approaches each day with joy! She has not let arthritis stop her from doing what she wants.  Instead, it has become a part of her because she does not remember a time when she did not have this disease. Anna is super excited to be a part of her second Purdue Dance Marathon!

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September 30, 2013 – Makenna Kurmay

If you haven’t had the pleasure of meeting our Riley kid of the week Miss Makenna Kurmay then you are missing out! Makenna is a spunky 8 year old so full of energy with such a beautiful smile. She is the big sister of one of our other awesome Riley kids, Maison. Her favorite foods are popcorn and chocolate milk and she love Doc Mcstuffins, purses, and girly stuff!

Makenna was born 45 minutes after her baby shower at 3 months premature. She was born 1 pound 6 ounces and 11 inches long. We had an emergency c-section at our local hospital and then she was rushed to Riley and placed in the NICU. She spent 87 days in the NICU with many ups and downs and scary moments. She was discharged on her due date and came home on oxygen and an NG feeding tube (nose feeding tube). Three weeks after coming home the day after Christmas she had cardiac arrest and was back in the Riley ER receiving full support to bring her back. She then stayed for 30 days in the PICU at Riley where they tried to figure out what was wrong with her and how to help her. Makenna was back on a ventilator and was a very sick baby, we were terrified. After 30 days she was back on a small amount of oxygen and released to us. Right before her first birthday we decided her eating wasn’t progressing as quickly as we had hoped so we opted to have a G tube put in (feeding tube in her belly). In 2009 we moved to Baltimore, Maryland to attend an intensive inpatient feeding therapy program for 8 weeks. Makenna was an inpatient and we rotated staying with her in the hospital as I never leave her alone in the hospital, just as my parents always stayed with me. We go in as a family and we leave as a family. While in feeding school, Makenna gained lots of oral motor skills and progressed very well. Today she is a vibrant 8-year-old little girl who loves life and her little brother. Due to Makenna’s difficult birth and time in the hospital she has the following diagnosis, prenatal stroke believed to have occurred during the second trimester, Cerebral Palsy, Apraxia, and general developmental delays.

 

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September 23, 2013 – Hannah Jacobs

Hannah’s story started July 17, 1995.  The day before she was born her family found out that something was terribly wrong.  This is the day they found out that Hannah’s spine had not formed correctly and Hannah would be born the next day via an emergency C-Section at Memorial Hospital in South Bend Indiana.  Hannah stayed there for a month before she became a “Riley Kid”.

For the first year she had appointments at least once a month and saw several doctors at each appointment.  She has had surgeries from head to toe, too many to count.  One great thing about Riley is that no matter what specialist you need, they have the best!  That makes it a lot easier for Hannah’s family, knowing that she is in the best hands!  The doctors and nurses have become part of their family.  They say that Dr. Cain knows Hannah inside and out!  Hannah is not sure what her life would be like without all of the doctors like him.

Riley has done so much for her that she has decided to give back, after going to BSUDM with her sister she decided to create a Dance Marathon at her High School.  With the help of outstanding students at PHS they had their first Dance Marathon in 2012 raising over $11,000 and in 2013 they raised over $20,000!!!!  Last November Hannah was named one of the eight Riley Champions for 2013!

Hannah loves dance marathons and is so happy she got involved because she has met some amazing friends and other Riley families!  She says she will always be a Riley Kid and she is proud of it!!!

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September 15, 2013 – Caleb Hoppe

Our Riley Kid of the Week for this week is Caleb Hoppe! Caleb is two years old, and is about as sweet and outgoing as they come!  Caleb has a twin brother named Carsen who is his best friend.  The boys were born only 4 minutes apart.  Caleb absolutely loves farming. When he can, he loves riding on the tractors and combines through his family’s fields with his great uncle or great grandpa.  He also loves sports, especially baseball, soccer, basketball, and football. He’s always very active and loves playing outside, but also loves watching TV and Disney movies. When he and his family get the chance, they all love to go to the zoo and also to the Shedd Aquarium.

At 17 months old, in May of 2012, Caleb was diagnosed with Acute Lymphoblastic Leukemia (ALL). He was born a happy and healthy baby.  In May of 2012 after his parents noticed some random bruising, they took Caleb to his pediatrician for blood work. That night they called his parents and told them to take Caleb to the nearest children’s hospital to redraw his blood. After running tests and blood work, that night on May 21, 2012, Caleb was diagnosed with Leukemia. The next morning, Caleb, (with his mom), were rushed by ambulance to Riley’s Children’s Hospital, which was about 3 hours away.  Caleb stayed at Riley’s Children’s Hospital for a week while they did bone marrow aspirations, put his port in his chest, and started his 1st round of chemo.  Caleb had a rough 1st year of treatment; going to the hospital 2-3 times per week.  He missed 1 whole year of Holidays because he had low blood counts and could not be around people.  He started his Maintenance Phase in February 2013. As of May 2013, he’s been doing much better. Caleb now takes oral chemo daily, goes to the hospital every 4 weeks for IV chemo and to check his blood counts, is put on steroids 1 week out of every month, and every 12 weeks he gets a spinal tap (chemo inserted into his spine) as well. His counts still vary between being high and low, but luckily he’s handling treatment much better now. Caleb has just under 2 years left of chemotherapy. He should be done completely on July 30, 2015, making his entire treatment plan lasting 3 years and 3 months.

Despite all of this, Caleb’s family has started a non-profit organization, called iCaleb&Co. Their mission is to provide an iPad, Otter Box cover, and an iTunes gift card to every child in active treatment battling cancer at South Bend Memorial hospital (the hospital where Caleb spends most of his time at). The organization runs strictly on donations, and every amount is always very much appreciated. To view their mission statement, donate, and/or read more about the organization and get updates on Caleb, you can visit their website and/or Facebook page!

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[box]Learn more at:

http://icalebandco.org/

https://www.facebook.com/iCalebandCo[/box]

 

September 8, 2013 – Anders Maresh & Olivia Lautzenhiser


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