Brother. Son. Brain warrior. Superhero
Let's start from the beginning. Kage was born with severe jaundice. He had a floppy appearance and a hard time keeping food down as an infant. He was unable to hold himself up and had difficulty crawling until much later. He was hospitalized multiple times for RSV and pneumonia before his first birthday. Despite all this, I continued to be told he's totally fine just delayed. No testing, just reassurance everything was ok. Despite his struggles he was the sweetest baby ever and was always happy. After I moved to N.C. I switched to Kage's current pediatrician. And at Kage's two year check up it was very apparent things were not fine. The questionnaire I was given ended up being straight no's. He was unable to do anything the questions asked. At that time we received referrals to a wonderful Developmental and Behavioral Pediatrician. Dr. Nutt has been absolutely essential in our fight for answers, we were told early answers might not be a realistic expectation. With an average of 80% of children not receiving answers for their delays. Kage was diagnosed with global developmental delay and congenital hypotonia early on. We then began our therapy journey. PT, OT, and Speech. Thanks to Kages team we have since received referrals to Neurology, Genetics, Ortho, Gastroenterology, Cardiology, Vision and Hearing. After genetic testing we finally got the answer we had been waiting for Kages main diagnoses and a explanation for alot of behaviors and issues Noonan Syndrome. A rare genetic disorder and random mutation in Kages case. Evaluations by Pediatric Neurology and Neurosurgery found Kage to have Chiari Malformation of the skull base with abnormal signaling on an EEG and neuroradiographic evidence of partial obstruction of cerebrospinal fluid obstruction. Kage underwent a decompression on the brain August 2019. We saw great improvement quickly. Speech has greatly improved, headaches almost non existent, feeding improvements and temporary PT improvements.
Current Updates: Kages vision and heart were recently cleared. Which are two wonderful things we are so grateful for. Kage has been experiencing some physical regression in the form of more frequent falls and shortness of breathe/excessive fatigue. We did get braces from Ortho to help with stability and are still in discussions with Neurosurgery on whether or not spine surgery for his tethered cord is a good option in the future. More information is still needed at this time! Kage had surgery to remove a lesion from his scalp last month. Pathology found the lesion to be benign! Since the coronavirus pandemic all of Kages services Speech, Occupational and Physical therapy are on hold. We are quarantined at home after Kage was diagnosed with Bronchiolitis. Both the flu and RSV tests were negative. We were told to stay home and return if breathing worsens. Kage is doing well and I will continue to give him the best care possible. Thank you to everyone in Kage's team and prayer army. I will continue to update on Kages journey for friends and family. #Kagestrong