Thank you for your support!
You are your child's most powerful advocate and while that may sound empowering, it' also daunting. Where do you even begin? How can you advocate for your child if you don't know anything about DIPG? I heard from a number of professionals that I was my child's greatest advocate and they would even applaud my efforts. The truth is I never received any real advice on how to be an advocate instead, I was asked questions and applauded when I answered. That is not being an advocate. That is just being a parent. An advocate records data, researches on his/her own, challenges conventional treatment options, questions everything and strives to ensure everything is as comfortable as possible for your little warrior. So, how do you do this...
I wasn't sure what to do but I noticed that my doctors and nurses would ask the same questions over and over again. So, I started asking them why they were asking Noah those questions or why they were asking him to complete those tasks. Then I started learning what to look for in his answers and in the way he completes the tasks. From there I started monitoring him so that I could quickly identify changes in his mood, behavior or physical capabilities. Below are some charts I've used to help me along the way. By no means am I saying these are the definitive charts to guide your child to the cure. We are all learning this together so, please feel free to use them as a base and improve so that we can all do a better job in taking care of our children.
I've included some of the sheets we use to keep ourselves as organized as possible and I realize that they may need some further explanation. I'm not sure how to add notes on how to use the sheets so please contact us with any questions or thoughts.