THE COMPASS

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Introduction

Why we wrote this Guide

When we started this journey with our children, we were all overwhelmed by the amount of information we received: pamphlets, handouts, websites, notes and medical letters. Trying to sort through it was exhausting and, in most cases, unnecessary. As we met to discuss our journeys as parents and caregivers, we realized that we all had a similar experience. Why wasn’t the process streamlined? Why did it feel too large to tackle? Wouldn’t it be nice if there was a one-stop shop where parents could go to find the information they need?

Wanting the parents and caregivers who came after us to have a different experience, we decided to write this guide. We hope it will reassure you that this path has been travelled by others before, and you are not alone. We share with you the wisdom from our journeys and hope that this guide- The Compass – will help you navigate your path.

How The Compass can Guide you

This guide is not intended to replace the information provided to you by the health care professionals involved in your child’s care. It is intended to be a complementary guide to help you travel through your child’s medical journey. Our intent is to provide medical and technical information about brain and spinal cord injury and surgery with a combination of straightforward language, personal stories and tangible real-life resources that you can access. While the guide was written by parents in northern Alberta, and as such has references to local businesses and resources, we welcome families and caregivers of any child, in any location, to use this guide.

Understanding the basic information about your child’s condition, such as medical terminology, surgical procedures and complementary therapies, will alleviate some of the anxiety you may feel and will allow you to focus on your child.

We have written and organized this guide to follow you step by step through your child’s illness. Throughout the guide we have added real-world tips that help families. The Compass was designed not only as a resource guide that provides you with information, but also as a workbook.

Authors:

Melissa Da Silva BScN, RN

Wendy Beaudoin MN

Melody Willier

Vivek Mehta MD, MSc, FRCSC

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