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

Welcome to Our Houspital - update on Medical Good Faith Act

This is Faith's mask for her bipap.  The main tube is the forced air from the machine ad the little tube to the side is oxygen to help give her a little more help with her congestion.



This is a picture of our houspital.  The green tank is our oxygen. If you enlarge the photo, you can see our nebulizer for giving her breathing treatments like Pulmozine on the black storage piece behind her.  Look to the left and you can see the bipap unit which blows air at high pressure to keep her open.  To the left of the bipap is a suction unit which can be used with a red robin (thin long tube) to clean out her nasal area and throat.

As you can see Faith is sick.  She has been slowly getting worse through the week.  Jesi even took her to the ENT at U of M to have them check her out because she kept getting worse, and this was after going to see our pediatrician who is nearby.  So last night when I got home, I was troubled by how she looked and was breathing which I know always makes Jesi more nervous when I reach the point of thinking we might need to go to the hospital.  Well, Faith was already taking antibiotics from the pediatrician so we didn't need that.  We have all the breathing treatments like Pulmozine, Albuteral, Flovent, and Atrovent that they would do in the hospital.  With the bipap, we have high flow air which we can add in oxygen as you see above.  We can suction her out as well with our new replacement unit which Jesi exchanged on her trip to U of M the other day. Essentially, the only thing we can't do at home which they can do in the PICU is intubate her, but everything else we have...hence our Houspital.

So we still needed one more thing for Faith, steroids.  Well, our pediatrician had given us a prescription to be able to use it when Faith was in need.  I thought before we head to the hospital, let's get the steroids and see how she does because at that point, I thought she sounded really bad when I listened with out stethoscope to her breathing which was very labored.  In fact, I haven't seen her breathing that labored in quite some time so you can see why we were concerned.  Jesi left to get the steroids and while she was gone, I hooked Faith up with her bipap and added the oxygen into the flow.  Even with the forced air pressure from the bipap, she was still struggling which was definitely troubling.  We gave her a bit of time to let the steroids work to shrink any swelling which began to happen.  Faith then had a little coughing fit and began coughing out lots of junk.  Suddenly she began to breath a little easier.  I suctioned her out and got a whole lot more stuff.  At this point we thought that we could make it through the night and decide in the morning.  So Jesi spent the night taking care of her and got about 4 hours of sleep, but this morning Faith woke up looking around at things and people more like normal.  She is still sick, but clearly far better in just a few hours.  When I came down the stairs, I found Jesi and Faith both peacefully sleeping on the couch. 

The pictures above are from this morning...I should have taken some last night so you could see the difference.  We are quite grateful to have this medical equipment in our home.  It is quite clear that with the right help these children can thrive, and we save our insurance company ridiculous amounts of money by avoiding the hospital.  Our houspital is far more comfortable than the hospital...our own little PICU minus the intubation.  By the way, all of our other children have been sick with this as well.  Grace has probably been fighting it the longest and had it pretty rough.

Faith laying on the couch working toward her recovery. 

Medical Good Faith Act update:  We have had tremendous success with our bill  to require hospitals and doctors to reveal their medical futility policies.  On Tuesday morning, I got an email congratulating me on passage of the bill on the floor of the Michigan Senate.  I was stunned because the last communication that I had with the senator's office was some Catholic hospital wanted to add language which made me nervous.  I was reassured that no changes would be made without my approval so I was a bit confused by the email at first, but it was from Senator Tupac Hunter's chief of staff so I knew it must be true.  I did some checking and found out that the bill had just passed by a vote of 37-0-1...the 1 was an absent Senator who was a co-sponsor of the bill so it would have been a full 38-0 victory.  This is AMAZING as we wanted this type of victory, but didn't think we could win over all the democrats.  The reality is...its a pro-life bill.  We believe this overwhelming bipartisan victory will help us get momentum to get it passed in multiple states with the help of other Trisomy 18 parents.  Now it moves to the Michigan House of Representatives.  I have already had some back and forth emails from the chair of the House Health Policy Committee where the bill has been referred.  She let me know that she appreciated our efforts and looks forward to hearing our story, and her staff will be in touch with us to let us know about scheduling.  We are very hopeful to get this through the House quickly to get it signed and put into effect soon.
 "Good faith is an abstract and comprehensive term that encompasses a sincere belief or motive without any malice or the desire to defraud others. It derives from the translation of the Latin term bona fide, and courts use the two terms interchangeably."

Reaching for the Hem of His Garment

Faith sleeping this morning with her bipap.

Well, here I am with time on my hands able to post.  The family is all gone this Saturday morning and headed in different directions.  Grace and Eli were thrilled out of their minds because they were headed to a class on Robert's Rules for meetings with their Nana.  Oh it does sound exciting.  Gideon spent the night with a friend for his birthday, and Hope is with Jesi at Upward Cheerleading.  I am stuck home because Faith has been bleeding again.  She is still sleeping...probably just tired from a lack of blood.  She started bleeding the other night; although, we are not sure what caused it this time.  We decided to start giving her watered down food again yesterday, but we should have waited to do so.  She had fresh blood in her diaper last night.  We keep her away from everyone during these times because her immune system is certainly compromised.  We continue to reach for the hem of Jesus' garment that this little girl will be healed of this issue of blood.

Jesi with Grace, Eli, Gideon, Hope, and Faith in front of the Michigan State Capital building.

Hope in the Senate Committee chambers just before the hearing started.

We were thrilled Thursday morning to learn that the Medical Good Faith Act was voted through the Michigan Senate Health Policy Committee by a vote of 7-0 with the two democrats joining our side.  I think this happened mostly because of Jesi's great performance (very proud of my wife).  We may see the bill hit the floor of the senate as early as this Thursday morning.  We have a bold republican majority doing many things not liked by the other side so I think our bill is not viewed negatively like it was in Minnesota because they have bigger fights on their hands.  Plus, I think, we might have found a good way to sell it.  Once we have it as law, I will share the bill.  The Michigan Catholic Conference wanted to rewrite the bill without mentioning "Medical Futility" of which I was unsure.  They did and both Jesi and I thought it looked pretty good so I sent both bills to Senator Rick Santorum to get his thoughts.  He liked the new version as well so Michigan Senator Jim Marleau's office did a final rewrite of the bill on Wednesday night and submitted the substitute bill on Thursday morning.  Once we get through the Senate, the bill heads to the Michigan House where our friend and State Rep Tom McMillin will help guide it through the house.  We are excited about getting this to Governor Snyder's desk for a signature.

SENATE COMMITTEE HEARING LINK

Jesi and I will be testifying Thursday March 7 at the Michigan Senate Health Policy Committee session at 2:30pm.  The hearing will be streamed so anyone can watch.  I am providing the link here to make it easy to find.  By God's grace, this will be the first step toward making the Medical Good Faith Act the law in Michigan.

http://www.senate.michigan.gov/tvschedule/tvlive.htm

Committee Hearing May Be Next Week

Faith is sitting beside me talking and squealing, and just having a good old time.  She has had a pretty good winter with not even one trip to the hospital.  We have had a few illnesses, but she has gotten past them well.  She continues to work on her walking skills.  Since we haven't had to worry as much about her health, we have been able to focus on some other things.  One of these is the Medical Good Faith Act.  I spoke with Michigan Senator Marleau's office today and wanted to update you on where we stand.

This link will allow you to read the bill... http://www.legislature.mi.gov/(S(czo0n5555z05j0552gs0umuz))/mileg.aspx?page=GetObject&objectName=2013-SB-0165

Today I learned that not only do we have Senator Marleau, chair of the Health Policy Committee, as the sponsor, but we have 4 other Senators on the committee co-sponsoring the bill.  This means 5 of the 8 state senators on this committee are sponsoring the bill which makes for good odds on passage in the committee. :)  Over the weekend, I was a delegate to the Republican State Convention and got to speak with Marleau about the bill.  I also talked with Brian Calley, our lieutenant governor, who has a son with autism.  He wants to get together with Marleau to discuss the bill so God is giving us favor with many.  I was also told today that we may have the committee hearing next Thursday March 7 at 2:30pm.  If it is scheduled, Jesi and I will be taking the family to Lansing to testify before the committee.

I was told that they are currently not planning to remove the "minor" verbiage in the bill which would make it apply only to those under 18 to ensure there won't be any problems passing it.  I have a strategy which I am hoping we can use.  I would like to have a senator introduce an amendment to the bill on the floor of the whole senate to remove the "minor" reference.  This way the senate can vote on the change and hopefully pass it then the bill would also pass, but even if it didn't pass the bill could still pass with the "minor" reference.  Once we get over this hurdle, next stop will be the Michigan House of Representatives.

MEDICAL GOOD FAITH ACT on the Move

We have gotten very good news this week regarding the Medical Good Faith Act which would require hospitals and doctors in Michigan to provide parents/guardians with their medical futility policies.  My state senator is Jim Marleau and he is sponsoring the bill.  Senator Marleau is the chair of the committee which handles these medical issues.  I also have the only pro-life democrat senator as a co-sponsor, his name is Tupac Hunter and he is also the minority leader.  The bill was introduced as Michigan Senate Bill 165 on February 7th and was referred to committee.  We should receive a committee hearing on a Thursday at 2:30 sometime in the next 4 weeks or so. 

My senator's office and Senator Hunter's office have been actively working to get support for the bill.  We have Right to Life of Michigan and the Catholic League backing the bill.  I am becoming increasing encouraged that we will get this bill passed since we have a dominant republican majority in both the state house and senate along with a republican governor.  If you all noticed, we have many of the same people serving who just passed Freedom to Work in Michigan so they have more than enough courage to vote this bill into law.  My goal is to get this passed into Michigan and begin working with others to get the Medical Good Faith Act passed into law throughout the country.

Faith update...she has been doing well, but is currently a bit under the weather.  She is really walking well and if you haven't seen the video my daughter shot, I have attached a link for you.

http://www.facebook.com/groups/T18Mommies/10151420912689551/?notif_t=group_activity