http://childrenshospitals.typepad.com/2011allstars/2011/07/meet-thomas-k-parma-oh.html
This will be Thomas' card...like a baseball card that we can hand out to politicians (just in case he doesn't feel like talking).
Thomas and I are getting excited about visiting Washington DC for Family Advocacy Days. Along with patients from other children's hospitals around the country, Thomas and I will be telling our representatives about the importance of children's hospitals!
We know first hand how aggravating and helpless a parent feels when they are not getting answers or the help that they (and their child) not only need but deserves. The first few months after Thomas failed newborn hearing test were a whirlwind of misdiagnosis and needless tests. Not until we arrived at Rainbow did we start getting answers and the ball rolling for Thomas to get hearing aids and eventual cochlear implants.
Although I'm nervous about meeting our reps.... I know how important Children's hospitals are and I'm willing to speak up for them!!!
I'm hoping to take alot of pictures and will be bringing a notebook with me to jot down little notes and update my blog when I get home. I wish I had a phone that had fast internet access..but I don't!
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2 comments:
Melissa, thanks for writing this. I'm part of the team that puts together Family Advocacy Day each year. Most families get nervous to meet their members of congress, but I assure you, this is one of THIER favorite meetings, to meet the kids from their hospital and hear their story. What a great opportunity to have your voice and Thomas's voice be heard! Looking forward to meeting you both!
Maria Halverson
N.A.C.H.
Melissa -- I am part of the team that puts together Family Advocacy Day every year. We are thrilled to have you and Thomas come represent Rainbow Babies. This blog post is great! We hope other families will post and comment about their journey to Washington as well. As for meeting members of congress, don't worry. Most families get a little nervous, but your members anticipate this event each year and love hearing from children's hospitals patients and families. We will also provide a briefing to help prepare you as well. It should be fun and entertaining.
Keep up the good work and we look forward to meeting you very soon!
Maria Halverson
N.A.C.H.
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