So here we are ten months post surgery and our daughter is crying. She is saying she just wants to be a normal kid who isn’t always in pain. She wants to not need all these doctors and she wants doctors who can actually help her. She wants the pain to go away. She actually said why crying tonight that she doesn’t want to live her life in this much pain. 😞 never something a parent wants to hear. She said it’s not fair. Others kids don’t have this. I said but you do have a special bond with a group of kids who are like you. Who experience pain like you. Who live with chronic pain like you. I phoned one of those moms and she talked to Addyson for a bit on the phone. She told Addyson that her son also lives with the pain and that they understand the way she feels. We talked through some possible different flush protocols. Honestly so much of this is a trial by error protocol. It is so frustrating. It is hard to watch your child cry in pain. It’s hard to hear her say she hates the pain all the time. School starts soon. We had hoped this year would be less pain but now I’m not sure. We need help. We need a better protocol. We need the pain to be addressed.
We need Addyson to keep fighting. We are working hard to find the right team to help her. To get her the right protocol 💚