One of the best ways we've been able to give back to Le Bonheur is by serving on the Family Partner's Council.  Along with several other parents, hospital president Meri Armour, and Family Centered Care Director Janet Phillips, the council aims to offer advice on issues such as coordinating care for children with multiple specialists, advocating for children in the political system, and improving the quality of care and support received at Le Bonheur.

 We have met an amazing group of people on the council.  At each meeting, one partner shares his or her family's story.  Every story is so touching and inspiring.  We feel such hope when hearing about a child who has overcome what must have felt like insurmountable obstacles.  We cry with each other as another parent with teary eyes and a lump in her throat shares the story of a son who did not survive his obstacles.  Sharing our stories helps us know each other and helps us know how to use our experiences to help other children.  Some families struggle with having several doctors who may not always communicate with each other.  Others share concerns about access and rights in the public schools for children with special needs.  We are a support for each other and a wonderful network of knowledge.

Since the council's conception, the hospital administration has implemented some changes:  kids are put on their home medicine schedule (if one already exists) instead of a schedule that may be more convenient for the staff; when nurses change shifts, they discuss the care needed for the child right in front of the patient and family to ensure everyone knows what is coming next, and doors are encouraged to stay open (if families prefer) to diminish those feelings of isolation and foster an atmosphere of cooperation and family.  There have also been a number of design features for the new hospital that are solely the result of parent input.  The fact that families are even consulted is amazing and empowering; and for that, we thank Meri and Janet -- you are so special and such crusaders for our kids.  I could go on and on about them both -  wow, we are so lucky to have them in our corner helping our kids!

Through this council, we have been able to nurture our excitement about advocating for children's healthcare issues.  Last April, we traveled to Nashville to speak with state lawmakers, and we are ecstatic about visiting our nation's capital next week!   Thank you for following along with us!

Oh, by the way, if you want to help make a difference by advocating for kids yourself, just log on to Speak Now for Kids.  It's a website collecting opinions of REAL people to pass on to our legislators!!!!!  It's easy and only takes a few seconds!