MICHIGAN HOUSE OF REPRESENTATIVES TESTIMONY TODAY

First an update on Faith, she is doing very well.  We opened our home PICU and nursed her back to health without even going to the hospital.  I told Jesi that we need to call our insurance company an let them know that our home equipment just saved them about $40-$50,000.  I want them to know that we are on their side when it comes to spending and saving money.  We don't want them spending any more than necessary to help our daughter.  We also joked about having other T18 kids come see us when they need help.  Sadly, we did more for Faith at home than we have seen done at hospitals for other kids which is why we are working on the Medical Good Faith Act.

Jesi and I just returned with the family and a friend from Lansing, MI.  We found out Friday that we would potentially be testifying today and confirmed it yesterday.  We took Faith and our other children because it always helps our cause when people see our family.  The testimony went very well, and I would say that we won over the committee members of both parties as far as we could tell.  Many of them were certainly moved by our story and the stories of Mylah and Maristella.  If anything, the questions from the representatives were more about wondering if our bill goes far enough.  Some thought maybe the hospitals should be required to put their policies on their websites, but I pulled them back from this idea because we parents will find great ways to spread the word about hospital policies through the web.  I think hospitals might start balking and resisting if we were to add their suggestion, and you can't tell me that they won't bury them where they would be hard to find anyway.  I have other simpler ideas to rectify this for parents.

The committee will meet again in 2 weeks and vote the legislation through and to the House floor.  Once it passes the House, it will go back for approval from the Senate again because a language change is being made to it.  I think our next trip to Lansing will be to have the bill signed by the governor which could happen in June.  Ed Rivet, policy director for Right to Life of Michigan, wanted me to understand that legislation does not get done this fast.  He said the bill must have a special guide...I responded "the Hand of God."

We also had a reporter, Robin Erb, from the Detroit Free Press at the hearing and she has written a story which has already been published on the Freep website with the link below.  Robin was very kind and we enjoyed speaking with her.

http://www.freep.com/apps/pbcs.dll/article?AID=2013304300078