My Nephew and his Brain, Part 4 – Their Life Today
Continued from Part 3. After the surgery we were hopeful, that with a few limitations on his left side, my nephew would have a fairly normal life. Unfortunately, this was not to be. The faulty electrical impulses that had caused his seizures had migrated to the left lobe and a few days after surgery the seizures returned. It was true that they were milder than they had been before; he no longer stopped breathing when he had them, so some good had definitely come out of his surgery experience. They weren’t gone, however, so he spent another month in the hospital as the doctors tried a staggering amount of drug cocktails on him trying to figure out the best combination for controlling his seizures. None of them worked perfectly, though, so even today at the age of seven, he still has multiple seizures a day.
Under that kind of duress, his brain hasn’t been able to develop and he is pretty much an infant in a little boy’s body. He can’t walk or talk, and he has myriad medical problems due to his developmental difficulties. He has a problem with coughing, so mucus builds up in his lungs and he has been hospitalized many times for pneumonia. He has had hydrocephalus and now has a shunt that moves cerebral-spinal fluid from his head into his digestive tract. Because he has trouble swallowing, he is fed through a tube with a liquid diet and his digestive troubles have landed him in the hospital at least twice. He also has more doctors and specialists than an HMO, and his daily medication regimen keeps his local pharmacy in business.
But, in spite of everything, he has the most beautiful smile in the whole wide world, and even though he is limited in how much can tell us, that smile tells us when he is having fun and enjoying life. We try to do everything we can to coax out that smile, and we have found that adventures with his family can make it appear faster than anything. So, my nephew has been to Walt Disney World, Canada, the Bahamas, Mexico, the Grand Canyon, and just this last summer, Australia, in addition to his numerous trips all over the country to visit relatives. And, it is our sincere hope that we will be able to have many, many more adventures with him for the rest of his life because this kid is truly one of a kind.
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