Happylovedcourageouswarrior
On December 26, 2018, we welcomed Odin George Buser to the world – born at 39 weeks at Children’s Mercy Hospital. He had an unbalanced chromosome translocation that created a multitude of other medical issues including hydrocephalus, epilepsy, chronic respiratory insufficiency, and kidney disease. Odin spent his first three months in the NICU at Children’s Mercy, undergoing surgeries to place and replace a VP shunt, as well as surgery for a G-tube and vesicostomy. We learned early on the meaning of health advocacy as we battled with insurance to get Odin the tests and the care his little body needed.
When Odin came home, he started receiving in-home physical, occupational, and vision therapies. Again, we struggled with insurance to get adaptive equipment – like adaptive seating options, mobility devices to hold all his medical supplies, and therapy equipment. Odin also needed specialized adapted toys to help improve his quality of life and to experience play. We found bubble tubes that lit up to help with his vision therapy, switch-adapted toys he could activate to train cause and action reflexes, a light box and tablet for high-contrast vision therapy, and a screen for him to enjoy cartoons. All these things made our nugget Odin, or Odie, smile and giggle.
These tools also enabled Odin to hit milestones: He learned to explore his world through his hands. He would reach out and feel around for a toy to grab or button to activate. This exploration led to more purposeful movement – a milestone we were told he would never achieve. Soon he was grabbing the suction machine, much to the chagrin of the respiratory therapist. Odin also learned how to explore with sound. So many nights were spent in chattery conversation – with us lying next to him talking with him and watching him play with the sounds he could make, interjecting into the conversation.
Like his mythological namesake, and most toddlers, Odin learned how to be playfully mischievous. He was a pro at popping his nasal cannula out of his nose and wearing it on his forehead. During therapy sessions, he learned which therapists he could ‘play possum’ with and pretend to sleep, which ones would continue with therapy anyway, and which ones would turn it all into a game. Odie liked them all, but he loved the ones who would play. He’d close his eyes and pretend to sleep, and the therapist would pretend to leave and get quiet. You would see his eyelids slyly start to slide open – so he could see if the therapist had actually left. Then you’d hear the therapist say, “I see you peak’n!” Odin would stick out his tongue and smile.
As Odin grew, he continued to experience more of the world around him. Odie LOVED motion and particularly, spending time in the motion of water. He was slow to anger and quick to laugh. When Odin bestowed his smile on you, you simply fell in love and your whole face felt the smile. Some of his favorite times were spent swinging outside in his adaptive swing, going for walks in his wagon or stroller, floating in the pool or bathtub, and snuggling with his parents.
Just For $15 A Month You Can Change Someone's Life!
Your donations will go towards providing life enriching equipment for our little warriors.