There's a Little Faith left in Lansing

The Faith in the Medical Good Faith Act...chilling in the shade of her seat.

Our little Michigan Trisomy 18 Convention or better known as Joey's 4th birthday party.

T18 children include Faith, Joey, Lila, Mylah, and Ameir.

Well, we had a pretty good weekend even though Momma didn't get to join Faith at Joey's 4th birthday party.  Jesi was sick and could not attend, but it was still fun to see most of our T18 family friends here in Michigan and meet a new friend, Joey Pagac.

Faith is headed to Lansing tomorrow afternoon to meet with Governor Rick Snyder.  She has decided to allow us to come with her as we travel to Lansing for the Medical Good Faith Act signing which will take place in the governor's office at the capitol building.  This will be amazing to see our bill signed into law.  It is exciting to have gotten unanimous votes by the House and Senate.  The crazy part is how fast it has happened.  This bill was introduced in February and here we are in early June seeing it signed into law.  We will continue to work with parents in other states who would like to see this legislation made law.

ABSOLUTELY THRILLED!

Well, I have been trying to check on the Medical Good Faith Act's progress and found out today that the full House was going to vote on it...today.  I wanted to watch it, but my work day was absolutely nuts so I didn't get to watch and almost forgot about it.  So I logged onto the link below to check on the status, and I found out that the bill passed 108 - 0....Unanimous!  This is amazing!  Now the bill will go back to the Senate for final approval due to language changes in the House then next stop is Governor Snyder's desk.  Then we want to work with parents in other states to promote the legislation.

 http://www.legislature.mi.gov/(S(0eiof3zufdtiyk55fep5kxfo))/mileg.aspx?page=GetObject&objectName=2013-SB-0165

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

Medical Good Faith Act...getting closer

Faith has been doing pretty well.  Jesi took her to the ER on Thanksgiving Day Eve, and I met her there to take her place and spent the night with Faith in the hospital.  This has become an annual tradition as I have spent the last 3 Thanksgiving Days with Faith in the hospital while Jesi took the kids to my in-laws for dinner.  I was able to bring her home just before noon on Thanksgiving.  She was at the very early stages of pneumonia.  Jesi caught it quickly so we got our meds and got out of the hospital quickly, and Faith is doing very well.  She is sitting on the floor right now jabbering away, and earlier she was walking with her gate trainer (all by herself when she is on the carpet).  She is cute, but so little for a girl who will be 4 years old this month.

Now to my update on the Medical Good Faith Act...We were able to get a bill created in both the Michigan State House and Senate.  It is during a lame duck session and the agenda is already set so we won't make it to the floor for a vote, but I am confident that we will get it reintroduced in both chambers during the next session.  I have already been asked to follow up in mid-January.  I am looking forward to this and believe we will succeed.  I have attached the first page of the House bill.  I would do more, but seem to have run out of space with this lovely blog space.

This bill will require hospitals and doctors to reveal their medical futility policies so parents can make informed decisions about where to receive treatment.  This will help those of us who have been lied to about available treatments for our children because a hospital or doctor simply decided on its own not to offer medical help because the treatment has been deemed futile.  Thanks, but we can decide that on our own.

Good Faith in the Pool and State

SPLASH!!    SPLASH!!  SPLASH!!!

Faith loves to play with her big sister Hope.

And to think...it is only 100 degrees...just fine as long as she has water

Faith was sick for about a week, but we threw the bipap back on her and gave her some breathing treatments.  Now she is feeling much better and had a good time playing in the crazy heat.  It is so funny to watch how she checks out in the heat until we pour water on her feet or get her in a pool.

Progress is being made on our attempt to pass our Medical Good Faith bill in Michigan requiring doctors and hospitals to reveal their medical futility policies.  We have a republican in the Michigan state house who is submitting the bill and a democrat in the Michigan senate who is willing to co-sponsor a bill.  I pray God blesses our work and those who are willing to help us.