Some problems persisted: hypotonia (muscle weakness), auditory neuropathy (hearing loss), and no ability to suck or swallow. Over the first several months, Simon became stronger and stronger, and his abilities and interests grew. But his body had some metabolic problems as well, which went completely undetected until a devastating summer when they caused cardiac arrest. This incident left Simon with a severe brain injury. For weeks afterward, he was in such an unresponsive state that almost all his doctors urged us to sign a Do Not Resuscitate order. We could not bring ourselves to give up on him.
Since his brain injury, Osito has made slow, steady progress. He is now more alert and interactive; focusing on books and faces well. He still has very limited mobility and coordination, slow response and tracking, a seizure disorder, and temperature regulation problems. Simon breathes through tracheostomy tube – a precaution against central apnea and anaphylaxis – which needs frequent suctioning and cleaning. He is closely watched and connected to one or two monitors at all times to detect seizures, temperature extremes, agitation, oxygen needs. To monitor his electrolytes, we do blood draws from his permanent central IV line ourselves and take them to a lab.
We cook and blend fresh, nutritious food to give him through his feeding tube – salmon, beet greens, carrots, tomatoes, white northern beans, oatmeal, flaxseed, pears, apple juice, and some toddler formula. (We are decreasing the amount of processed formula every week in favor of whole foods). We are taking great care to provide Simon with a balanced diet that’s rich in potassium, which his body doesn’t use efficiently, and Omega-3 fatty acids, which have been shown to improve epilepsy, encourage cognitive function, and help to regulate body temperature.
We do as much therapy with Simon as possible to keep his limbs loose, facilitate good posture, and build the muscle needed for basic mobility and play. Professional therapists and Simon’s grandparents help with this effort. Simon loves the outdoors. We take him to our favorite parks and expose him to the many sights, sounds, and smells that nature offers. You can see the wonder in his eyes. He also loves meeting new people, spending time with family and friends, and listening to conversations/stories.
Osito has seen many specialists, but all of them have been extremely puzzled. They suspect a genetic disorder, but the extensive genetic testing we have done has generated only normal results. To this day, his exact underlying condition is unknown.
Simon’s future is bright. In every way we are trying to give him the best chance to grow and develop just as he was meant to. For this we are moving to San Diego, California. Simon has temperature regulation issues that keep him housebound during the long Nebraska winters. His temperature drops dangerously fast when exposed to cold weather – especially when he sleeps. The warmer climate of San Diego would provide good weather for him year-round allowing him to get outside and enjoy not only the beach, but the mountains and the desert too. San Diego also has a very highly rated children’s hospital, where Simon will be examined by a new set of pediatric specialists. Traveling with Simon from our home in Lincoln to San Diego will be extremely challenging and dangerous for Simon unless we're able to take him via air ambulance. At this time, we've not been able to get insurance approval for the $17,000 cost to transport Simon to California.
Soon, Simon may get the experience of walking – with support – because of a new piece of equipment called Upsee that we’ve ordered. We are also researching modified tricycles (and even tandems with room for a parent) that have plenty of support and hope to get Simon biking within the next year. He has active, strong legs, so we think a tricycle will be perfect for him and can’t wait for our family bike rides to the beach!
Our financial situation is tight because we stay home with Simon full time. Due to his medically fragile condition, we monitor him very closely around the clock. We feel he needs all our energy, attention, and time and can’t imagine spending them on anything else. To help him develop and have the best life possible, Simon also needs on-going special medical care and equipment. The costs for specialized care often exceed what insurance will cover, so our family and friends created and joined Team Simon. Team Simon provides community support as well as helping with the significant expenses for his care. 100% of the funds raised by Team Simon are used to help give our wonderful, amazing son the best life possible.
Thanks for listening to our story,
Abbey, Eric, and Simon
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