It sounds like you’ve navigated a lot of challenges and learned a lot along the way. Advocating for yourself and your child can indeed be daunting, especially when navigating complex medical issues. Clear communication and knowing how to effectively reach out to your care team are crucial. It’s also great that you’re proactive in asking for repeated explanations or written information to fully understand your child’s condition and treatment options.
If you ever find yourself unsure about something or needing more support, don’t hesitate to ask for it. Whether it’s through direct communication with your team, reaching out to advocacy services, or seeking additional written resources, your involvement and questions are important for ensuring the best care for your child.