2012

We knew something was wrong with Jake. We had been to different doctors for various reasons, and I had shared his history, but no one seemed to have any answers. We could describe the symptoms- frequent ear infections as a baby, the weird virus in the 1st grade, the warts and how Jake could just never get “just a cold “. He always got “sicker than normal”. His sister became ill with gastrointestinal flu after we visited the children’s museum. Soon Jake had it. Molly recovered in a timely manner, while Jake had the oddest diarrhea for a month. He was happy-go-lucky and no fever, but still in diapers so I experienced the diarrhea first hand. I wasn’t overly alarmed. He was eating and drinking, but lost weight. He didn’t act or feel sick. He finally recovered. As years passed, he would always get sicker longer and worse than his sister. His colds always went to his chest, and he was diagnosed over and over with pneumonia. He missed a lot of important events like field trips,  state track meets, holidays…we later chose a small, private university  close to home anticipating these acute illnesses. In 2012, we took him to see a nurse practitioner at the clinic assuming he needed an antibiotic. She was perplexed. She called in her attending physician who saw his odd, lacey rash. “Kiddo, you have a connective tissue disorder.” For the first time ever, someone seemed to make a connection.  We were referred to a renowned children’s hospital. We were finally going to have answers. The first doctor was a rheumatologist. “Who sent you here?” “Why did he send you to me?” I tried in vain to give him every sympton, every detail. He listened and dismissed us. We must have looked so forlorn that he decided to refer us to another doctor. So a month later, we were back. Of course Jake was symptom free and doing pretty well. He took blood, and told us to call him when Jake was sick so he could see what we were describing. Eventually it happened. Jake felt terrible; the weather was terrible, and I forced him to travel 2 hours to see the doctor. The visit was unremarkable, but finally we had an answer.

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