Devyn's Story - Superbeans

Devyn's Story - Superbeans

 

Devyn's Story

Written By Devyn's Mom

It was June 2016, I was suddenly ill for over a week. I was a busy mom with 2 young toddlers, working full time and hadn’t realized that my period was late. I suddenly put two and two together, and although I had not planned on having another baby, God blessed me with another beautiful baby girl on January 9, 2017. Devyn was born a healthy 6 pound baby with a head full of dark hair. She was the perfect completion to my family. Devyn was a healthy and happy little girl, always smiling, jumping, dancing, singing, playing and determined to keep up with her older brother and sister, never letting anything or anyone get her down or in her way. 

Late February 2019, I noticed that Devyn’s left knee was slightly swollen, not much, just slightly larger than her right knee. I wondered to myself if she had fallen, jumped off of something and landed funny (wouldn’t have been unusual for Devyn as she is a busy girl), however there were no situations that I could recall where this could have happened and Devyn certainly did not complain about anything. I thought to myself that I’ll keep an eye on it, and monitor. 


Mid March 2019, the swelling began to increase a bit and was warm to touch. At this time I decided I needed to have it checked and so I booked Devyn in to see her Pediatrician. Our Pediatrician examined, and sent us for x rays. No break or sprain in her knee. Back to the Pediatrician, other tests ordered. Blood work completed and came back normal. By May 2019 the inflammation in Devyn’s left knee was so severe that she could no longer walk (although she was determined and walked the best she could with an extreme limp) as her left knee was bent. Devyn’s Pediatrician called into the Stollery hospitals emergency department and sent us on our way there to be met by staff upon entry! 
 
Once at the Stollery hospital emergency and after a call up to the Pediatrician rheumatology ward, Devyn was officially diagnosed with Oligoarticular Idiopathic Juvenile Arthritis. It was a weight lifted off of my shoulders to finally have an explanation for what was going on with my baby girl, and to have a diagnosis, however an added weight as I learned what this could mean for her future, this is not adult arthritis, this is an autoimmune disease. My baby girl will never outgrow this, she will live her entire life in pain and take harsh medications such as chemotherapy and other biological agents to try and suppress her immune system, therefore suppressing the inflammation. These medications can have severe reactions on the body's vital organs. 


June 24, 2019 Devyn had her first steroid injection into her left knee. This was done at the Stollery children’s hospital under general anesthesia. During this procedure, a Paediatric physiotherapy team attended so as to straighten Devyn’s left knee as straight as they could get it, she was then casted from hip to ankle to keep her left knee straight. Following this injection, Devyn was prescribed Naproxen for inflammation and pain management. This seemed to work, Devyn attended bi-monthly appointments with her rheumatologist, had bi-monthly blood work completed and bi-monthly eye examinations as the type of Juvenile Arthritis Devyn has can cause Uveitis, leading to blindness. However the results lasted only a short period of time. 


By February 2020, Devyn had a second steroid injection into her right knee. Naproxen was no longer working and Devyn was prescribed Methotrexate (chemotherapy). This medication was taken orally for a few months, with no improvement. This disease (Juvenile Arthritis) was ravaging through my baby’s body and began affecting her right ankle, the ball of her right foot and the first two toes on her right foot. As a result, in May 2020, Devyn’s specialists switched her from oral methotrexate to weekly injections of Methotrexate which I administered to Devyn weekly at home. 


Devyn did not improve, and by late January 2021 I made the tough decision to add bi-weekly Humira injections to Devyn’s Methotrexate regime. Devyn continued to have flares in her affected joints, and at her last check up, September 29, 2021, it was discovered that Devyn’s left wrist is now severely impacted along with her left ankle and left heel. Her specialist is now recommending we double Devyn’s dose of Humira, so she will now receive weekly injections of Humira, along with her weekly Methotrexate.


This is the medical side of Devyn’s disease, Juvenile Idiopathic Arthritis certainly does not describe my baby girl though. Let me introduce you to Devyn Margaret Rae Tappen-Kramer.  


Devyn is 4yrs old, she’s an optimist (from the day she graced this earth). She is strong, resilient, determined and always so happy! She loves her ballet classes and living room dance parties, adores singing her favourite songs, loves to colour, she has an incredible admiration for all living creatures (she has a mad love for and interest in horses) and adores her cats and dogs (Devyn is an animal whisperer, animals truly are drawn to her). Devyn is amazing at keeping up with her older siblings, she self modifies activities to suit her needs. To watch Devyn play, run, jump, you would never know the tremendous pain and perseverance that it takes for her to partake in these simple tasks that should come naturally to a 4yr old little girl. 


Devyn is a warrior!!! She is my real life superhero 🦸‍♀️ . Devyn lives life with daily pain, however you will never hear her complain. She wakes up with a smile on her face every day, so excited for what the day brings. She has taught me so much about being present, finding joy in the simplest things and living life to its fullest. Devyn does not allow herself to be defined by her disease, even her specialists are in constant awe of her strength! 


I first found PK Beans in 2014. I had initially sought out a clothing company without harsh chemicals and dyes as my son had bad eczema on his back and was reactive to many other clothing brands. Devyn and I both love and appreciate the comfort and ease of beans during her many medical appointments. Being comfortable during a 2.5hr long appointment is crucial. 

Thank you for taking the time to learn a little about my superhero’s journey.

Super Beans is a space dedicated to children who have overcome challenges in their life and are thriving today. These stories, told by their families, continually inspire us and we hope that sharing them can positively impact you and your family too. Do you know a Super Bean? We would love to share their story!  Email us at play@pkbeans.com.
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