Wednesday, May 6, 2015
New Care Package Items
Sisters by Heart is thrilled to announce the launch of two brand new care package items, the Book of Hope and the Single Ventricle Q&A booklet! Both of these new tools for HLHS families were unveiled this past weekend at the NPC-QIC Learning Session and will be included in our care packages beginning next week.
Book of Hope
In mid-December of last year, we reached out to our HLHS community, asking for submissions for a brand new Book of Hope; a book that would showcase the love and support of our community, as a beacon of hope for newly diagnosed families. Our community responded overwhelmingly, with over 50 submissions! After many hours reading the inspiring stories, editing, proofreading, planning and discussing, we're so proud and excited to say that the 1st edition of the HLHS Book of Hope is complete! We're so grateful for the team at Empowered by Kids for reaching out to Sisters by Heart, and for producing this incredible book for the HLHS community!
Not only will this book be included in our care packages, but Empowered by Kids will provide Books to every NPC-QIC care center to help meet their HLHS families' needs! What an incredible gift of HOPE for newly diagnosed families!
You can access the Book of Hope (and order your own copy) at the Empowered by Kids website here!
Single Ventricle Q&A Booklet
|5 pages of Q & A to prepare you in communicating with your child's care team|
Sisters by Heart has been hard at work with NPC-QIC's Transparency Workgroup to develop a useful tool for expecting parents - a booklet parents can take with them to appointments, with a list of questions to ask and things to consider! We wanted a place for all of this information to be housed together in an easy format for our parents to use. Thus, the Single Ventricle Q&A Booklet was born! The Booklet includes several important questions to consider asking your child's care team, along with our ever popular hospital packing list, and a space for parents to write their own notes! We're especially excited at how helpful this tool will be for parents at smaller centers, or who aren't connected to the heart community already, who don't know what questions they should be asking. What we wouldn't have given for such a useful tool as newly diagnosed parents!
The Single Ventricle Q&A booklet will be included in all care packages moving forward. Both Sisters by Heart and NPC are thrilled to empower parents and foster relationships between parents and providers!
Families who don't have access to our care packages will be able to view and print the HLHS Book of Hope (via Empowered by Kids) and the Single Ventricle Q&A (via the Research/PDF section on our new site)! You can download your own copy here.
Stay tuned for more news on Sisters by Heart care packages - we have a lot of exciting additions on the horizon!