My wife, Heather, and I were blessed with twins: a boy and a girl named Sebastian and Emma. It wasn't until she was one month old that we found out Emma had cystic fibrosis. We took it hard at first and realized our lives would be changed forever. But, we also knew that we would battle this disease alongside our little girl. We decided that we would start by tracking how we care for her every day. Little did we know, a very famous dog named Goofy would help us too.
Heather and I have a set routine that we use whenever we can (which is mainly on weekends when we are usually both off work). Here are five ways that we uphold this routine and help our baby girl sustain her daily CF care:
- When I wake Emma up in the morning, I always tell her how she is going to make a difference in the world. I then let her know how important it is for her and her stuffed animal, Goofy, to do their breathing treatment. She then jumps in her chair and starts her vest.
- At breakfast, my wife and I always tell her that she and Goofy need to take their enzymes to grow big and strong. We also tell her champions eat breakfast. We give her enzymes, and she makes believe she is giving Goofy enzymes as well. We do the same thing for lunch and dinner.
- At naptime, we ask her to go lay down and rest with Goofy. We tell her how important it is to rest and wake up to the second part of the day refreshed. We tell her brother all these things too. When it's finally bedtime, we let her know how important a good night's sleep is. We tell her to put Goofy to bed, and she usually falls right to sleep after that.
- At bath time, we let her know how important it is to stay clean, brush her teeth, and “clean” Goofy. We tell her that keeping clean every day will actually help keep her and Goofy from getting sick, and that good personal hygiene will go a long way in keeping her healthy.
- We make sure that she does some sort of physical activity for at least 30 minutes a day, whether it is walking around our neighborhood, jumping on the trampoline, or just playing outside in the backyard with her brother.