Today addyson had three appointments. Three appointments that meant she would be at Hopkins from 10am till 4pm, long day. How do you make a long stressful day better….you run into your warrior sister in the X-ray clinic knowing that means you will see her in the surgical clinic area! Having a friend to go through this by Addyson’s Side is helpful for her and us. We rely on each other. Us moms lean on each other. We chat about options and weigh the pros and cons with each other. We do this knowing there is no perfect fix. There is no fix. There is no cure. Only hope for less pain.
We are hoping to have Addyson’s mri results back within a week. Her next Gi appointment is 10 December. We will talk next steps then. Overall her surgeon said keep using your other care team members because I know there is another reason for the current state besides colon but I’m not 100% sure what. He said he truly thinks keeping neuro Gi on her case is important (chop dr).
We will continue to work w kki on pain management while working with chop on a better protocol. All while keeping our local care team informed.
Overall today our best appointment was with Addyson’s psychologist. She asked some hard questions: what do you want going into the new year? Less appointments? Better pain management? Better communication? Honestly we would love all of it but guess we really need to figure out what our goals will be for 2019. But today Addyson’s psychologist took her for ice cream and to the fish pond. She let her decompress from her day of testing. She let her guide the conversation. She let her know that she was super proud of her for doing amazing on a difficult procedure. The nurse said addyson did better than most adults. Her psychologist said I expected nothing less because addyson is super strong. I think she’s right. This girl is tough. She is handling these hard procedures.