In my first year of providing much needed pediatric rehabilitation services to children with physical and mental health needs in Saskatoon and surrounding area, I am continually humbled by the parents and siblings who are so devoted to the health and well-being of the children in their lives with special needs.
I would like to introduce Kayden Kot. Kayden is 2 years old, and has encountered significant challenges since birth, when he initially struggled with feeding. He had difficulty taking in enough milk, and he was only surviving, not thriving. By four weeks, doctors felt he had the common condition of reflux and he would grow out of it soon. By six weeks, Kayden had quit eating altogether and his weight dropped to below birth weight. A feeding tube was placed in his nose to his stomach, but unfortunately, Kayden still struggled with severe cramping and vomiting (up to 25 times a day).
Unable to find a cause of Kayden’s difficulties locally, Pete and Sylvie (Kayden's mom and dad) took Kayden to a specialized pediatric feeding clinic in Toronto. Upon arrival, it was determined that he needed emergency management and was sent directly to Toronto SickKids Hospital due to malnutrition. He was given a provisional diagnosis of severe reflux, and provided medication to help keep milk down. However, on returning home, his condition worsened with prolonged, painful feeding attempts. Pete and Sylvie were referred to the Stollery Children’s hospital in Edmonton when Kayden was 6.5 months old. He was found to have a severe allergy to cow's milk protein during his four week stay.
This seemed to be a turning point for Kayden and he was stable for several months. But, it became apparent that psychologically, Kayden struggled with the concept of feeding orally due to the trauma and pain experienced earlier. Kayden's physical development was also not normal - he experienced significant delayed motor and sensory development. Kayden was referred by his pediatrician to the STAR Center, a specialized multi-disciplinary paediatric treatment center in Denver to further address his feeding and developmental difficulties. Kayden spent several weeks in Denver undergoing various treatments with feeding specialists, occupational therapists and medical specialists. At this point the feeding tube was moved to his stomach and he was put on a special formula (http://www.cbc.ca/news/canada/saskatchewan/story/2012/07/06/sk-denver-baby.html).
Pete, Kayden, and big sister Edyn
The Kots returned home from the STAR center with an increased understanding of Kayden’s difficulties. Kayden was found to have secondary issues with his nervous system’s ability to process and use information from his senses, resulting in severe sensitivity to touch, movement, sound, and light.
With this improved understanding, in November 2013, Kayden began intensive occupational therapy treatment back in Saskatoon, combined with support from his pediatrician, neurologist, family physician and daily home care nursing. Through very hard work, Kayden’s feeding progressed so he was able to eat some food orally. His sensory and motor development also progressed from sitting independently, "scooting" on his bum, and grasping items in his hands, to lifting his head up while on his tummy, rolling over with mild assistance, and even standing for up to 10 minutes with just a bit of support.
Unfortunately, in June 2013 Kayden's electrolyte levels dropped dangerously low - an unexpected and life threatening event. He was admitted to the pediatric intensive care unit in Saskatoon where he spent the next 6 weeks trying to restore his electrolyte levels. A complication of this process resulted in further neurological damage that set Kayden back significantly.
Kayden is now back at home where he is being closely monitored, and has resumed occupational therapy treatment. While this event erased 8 months of therapeutic gains, Kayden is beginning to show some encouraging signs of returning physical and neurological development. In addition, this event may have uncovered further underlying causes of Kayden's failure to thrive.
Sylvie and Kayden
It is apparent that Kayden will require extensive supports for the foreseeable future in an attempt to maximize his health in many facets.The intensity of his need goes well beyond what the public health care system can provide. It is anticipated that Kayden will require continued treatment including speech language therapy, occupational therapy, nutrition, nursing, and specialized equipment, for example.
To make a long story short, please join us on September 7, 2013 for a great evening of music and mingling to support Kayden’s ongoing needs. Your ticket price is your donation, and can be paid by cash or cheque at the door. Concert proceeds will be going to Kayden Kot’s medical and rehabilitation needs.
Stephan Bourassa, BMR(OT), OT Reg. (Sask)
Owner, Milestones Occupational Therapy for Children