Soren’s Journey

July 1, 2014 Soren was 2 and suffered an anoxic brain injury from a near drowning. He superseded all expectations of survival, comprehension, cognition, memory, physical control. In October 2015 he got botox injections in his hands and Achilles tendons for spasticity which traveled to his brain and every milestone he overcame, regressed. Since then we have spent well over $50k in treatments. I know there is a lot of things out there to help him, even brain mapping, but I cannot get anywhere in Pennsylvania to give this boy what he needs. Everything I do I have to pull teeth then go to another state, get referrals by hundreds of others to find innovative, non traditional therapies that work. I am mentally and emotionally tired of researching things doctors already know and won’t tell. Tired of suggesting things they refuse to try. Four years later and now I need to buy a suitable house, which I do not have the means to buy. Nobody has yet to do oral motor stimulation! I am doing what I can find on YouTube and do not have the time to be consistent. There is the Mustagova method, the Anat Banal Method…nobody local practices it. He is only getting pt one day a week! I am angry and frustrated that I have beg, borrow and plead what should be a given. No matter what I believe will help, nobody will do. I am very angry. It seems like all they want to do is keep him alive and feed the big pharma. I know there are answers out there. They won’t do stem cells on the brain nor the damaged or contracted ligaments and tendons but they have no problem injecting a neurotoxin on a brain damaged child. I can’t get them to do hyperbaric oxygen, brain mapping, light therapy, transcranial ultrasound, vagus nerve stimulation, cold laser therapy, nothing. I can never get answers from the medical professionals in the traditional setting, but I can get much validation from non-traditional specialists…down to nutritional supplements to heal his brain.