FAITH TRIPPIN' WITH THE FAMILY and Our November 6 Speaking Engagement

Faith sporting her new glasses with transition lenses to help her in the sun.

Sunrise over Mackinac Island, MI...tough to beat

Main St. on Mackinac (pronounced Mackinaw) Island

ONLY Human and Horse Power are allowed on this island...NO CARS

Beautiful shot of the island and bay.

Two of my beautiful girls taking a stroll on Main St. before our departure.

Well, it had to end, but a great view on the way back to main land.

Jesi, Brad, and Senator Rand Paul

Governor Scott Walker of Wisconsin, Brad and Jesi

 

Jesi's mom takes our family to Mackinac Island every other year for the Republican Leadership Conference.  Mackinac Island is located near the Mackinac Bridge which stretches between the lower peninsula and upper peninsula of Michigan.  It makes for lots of fun and Faith also had a great time on this trip with her siblings.  As you can, Jesi and I went out for an evening and got to meet Rand Paul and Scott Walker.  Both were very nice men, but I really like Governor Walker.  It was a great weekend and its always very helpful to connect with people who can influence policies.

Jesi and I have a fun announcement.  We have been invited to be the keynote speakers at the Central Michigan Isabella County Focus on Life Dinner (that's a mouthful) on Wednesday November 6.  This is the Central Michigan Right to Life group.  We will drive to Mt. Pleasant, MI which surprisingly is located in Central Michigan.  It should be a fun evening, and we are looking forward to it.

NEW DAY IN MICHIGAN

Now this is one determined little girl.

Faith putting that determination to work.

Faith continues to improve her walking skills; although, she had an eye appointment a few weeks ago and we found out that she probably has a had time seeing the big E on the eye chart.  We have ordered glasses for her and are very curious to see how it will impact her.  I am betting that her walking will improve because she will now be able to see where she is going.  Also, we think that she will interact with people even better than she does now.  Faith has been pretty healthy with not too many real sickness issues.  We have had a couple of small bleeding bouts, but have learned to manage this issue.  We still struggle with her GI issues and really need to try our own blending to see if it helps her.  Right now, we are just anxiously awaiting her glasses to arrive so we can see how she reacts.

Well 9/11 has come and gone, and for us, this date now has more meaning than remembering the twin towers.  The Medical Good Faith Act has gone into effect as law here in Michigan.  Residents in this state can now go to hospitals and request their policies on providing life saving treatments before they check into a hospital and find out later that the hospital won't help them, or worse and have a loved one die and never find out the hospital deceived them.  So now 9/11 to the Smith family has become a great day to remember along with the memory of the attack on our country.  If you learn of anyone in Michigan who is having a special needs child or even an older parent with medical issues, PLEASE make sure you let them know to check the hospitals for how they will treat their loved one before they find out too late.

Medical Good Faith Act is LAW in Michigan

Michigan Governor Rick Snyder signs the Medical Good Faith Act into law.

Michigan Senator Jim Marleau and Governor Snyder hold the executed document.

Grace, Hope, Senator Marleau, Governor Snyder, Eli, Gideon, Jesi, Faith, and Brad

Picture with Kenneth and Lana Gabriel (Jesi's family on left) along with Byron and Evelyn Smith (Brad's family on right)

This is a photo of an original signature bill .

The Smith clan in the Michigan Senate Chamber

In Senate chamber with Byron & Evelyn Smith, Lana Gabriel, and Senator Marleau.

Faith is excited to take a photo with some family friends who traveled to Lansing for the signing.

This is nice, but can we just relish in the one?

Today was tremendous to experience the Medical Good Faith Act being made into law here in Michigan.  We had fun as a family participating in this signing ceremony and getting to meet Governor Rick Snyder.  With the incredible success of having this voted through unanimously, we look forward to helping other parents pass it in their states.  There is NO doubt that God blessed this effort because it has happened amazingly fast.  The law will take effect in 90 days so we will be working on an effort to create a place on the web to post the policies of hospitals as we acquire them.  We would like to develop a national resource where people can share hospitals' policies with others.

We were given several original signature bills along with several pens Governor Snyder used to sign the bills.  We will have to get it framed as our first bill ever passed.  If God continues to bless this effort, then we hope to see many more signed into law in more states.  All the Michigan staff that worked with us is excited to see this have an impact on other states.  We will have to see where this all leads. 

I want to thank Mary Kellett and Marta McClanahan for their inspiration and connections to their own effort to get this done in Minnesota.  Now we need to find a way to get it passed there.

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.

On The Road Again

The Medical Good Faith Act is on the road again.  I found out today that a schedule change moved our bill up on the schedule.  It was expected to be voted on by the Michigan Senate next week, but today they decided to move it up and voted on it today.  This vote was to reaffirm the language which was changed in the House vote.  Well, the Senate voted 36-0 (2 absent senators) to pass the bill and put it on the road to the governor's office for his signature.  This could happen as early as next week.  We are trying to arrange a photo op with Governor Snyder so we can use the picture for publicity purposes so pray that we have favor with this.  The only problem is my work schedule next week.  We have a pastor luncheon at work which is a gigantic station event and will own my week until Friday. 

Faith is sitting on my lap jabbering as I type this.  She thinks that she is helping me type with her hands resting on my hands as I type.  Reminds me of a note Rick Santorum sent to me saying that Bella was doing the identical thing.  It always amazes me how many things these T18 children do the same.  She really thinks that she is being funny right now smacking the computer and keeps clapping for herself.  In fact, she has now messed up my computer so it isn't typing correctly....this child.  Below is the link with the bill language and status....

http://www.legislature.mi.gov/(S(ilqnka451wx2gy2ylx31sg55))/mileg.aspx?page=GetObject&objectName=2013-SB-0165

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