How do I keep track of it all?

Preparation

Your child will have numerous medications and treatments. Start a log or journal. Prepare a one or two sheet recap with all the current meds, treatment history and the names of all relevant physicians, or other important individuals. Update it as things change, which is easy to do on the computer. When your child has to be admitted, you have a synopsis of everything for the admitting doctors who likely will not know your child. In addition to the obvious benefits of saving time and insuring accuracy, it also conveys to the hospital staff that you are a member of this team and come in with something to offer. Consider putting a smiling photo of your child at the top of the page.

Learn what you can about your child’s condition. Finding the right resources can be tricky because the information readily available is either frightening or too clinical. Ask your child’s doctors, social workers, nurses and other parents for good resources. Use them. You will be amazed at how quickly you learn and become comfortable with the terminology, treatments etc. The fear may start to ebb a little bit when you arm yourself with knowledge.