As parents, it’s our job to advocate for our children. Nobody knows that better than Amy and Pete Koegel, who have spent every day of the last 17 years advocating for their daughter, Isabel. “I do everything in my power to keep her healthy and out of the hospital,” says Amy.
Isabel has been homebound since fifth grade. With several life-limiting diagnoses, school was incredibly hard on both Isabel and her parents. “She would go to school for a week or two and then get sick and be out for several weeks,” says Amy. “The common cold may mean a few days of sniffles for some children, but for Isabel it means a 4 to 6-week battle. It got to the point where she was sick more than she was healthy.”
To keep her safe, Amy and Pete have to keep Isabel home from more than just school. Family vacations, trips the store, even birthday parties with other children are all too risky for her fragile immune system. “It’s hard. People don’t understand why we can’t do certain things. They don’t see how dangerous it is to take her somewhere, that we could literally end up in the hospital from attending a family gathering. It’s just not worth the risk.”
Operating within those limits, Amy and Pete work hard to make life amazing for Isabel. The 17-year-old has a funny personality and a tenacious spirit, and knows exactly what she likes and wants. Despite being nonverbal, her parents can tell a lot from her facial expressions. “She makes this certain face and we say ‘Ok Isabel, what are you scheming?’” Her favorite thing to do is watch movies, and if you catch Amy singing Barney or Elmo songs, it’s because Isabel is always listening to music!
Isabel’s grandmother has filled an invaluable role as her personal care assistant, or PCA, and besides a recent addition of night nurse visits, Isabel receives around the clock care from people who love her. Her long list of diagnoses requires medications 5-8 times a day, and Isabel needs therapies and treatments every few hours to help with severe respiratory issues. This constant care makes respite for Amy and Pete crucial, and they have leaned on Crescent Cove for much-needed breaks.
Amy spent the night at Crescent Cove during Isabel’s first weekend stay. She didn’t expect to be comfortable enough to leave the following day, but woke up feeling different. “To my surprise, I felt the opposite of how I thought I would. I had no worries leaving her alone for the remainder of the weekend, knowing she was in good hands.”
Isabel gets spoiled with all her favorite things at Crescent Cove – movie time, music therapy opportunities, and relaxing baths in the giant spa tub. “Leaving her at Crescent Cove means I can take a step back and breathe. Our life is high-stress and I’m on edge all the time, but when Isabel is at Crescent Cove I can actually relax. Words can’t even describe how good that feels to be so relaxed and know she’s being so well taken care of. It’s beyond amazing.”