HAVE YOU EVER HAD AN AWKWARD MOMENT....yet appointed by God

I had the most amazing opportunity earlier this evening; at the same time, it was one of the most awkward situations in which I have ever been.  It all began yesterday.  A friend who was hired by the RNC invited me to an event that he had organized.  RNC Chairman Reince Priebus was attending the event with many other Detroit area community leaders so I decided to go.  While I was there, I met several new people including a doctor from the DMC (Detroit Medical Center).  DMC runs Children's Hospital in Detroit where we were denied proper care for Faith.  We have other friends who experienced the same problem at DMC.  So, I mentioned to him our story about not receiving care for our daughter and getting the Medical Good Faith Act passed because of this experience.  I wouldn't normally have said this upon just meeting him, but there was something about this doctor that I liked from the start.  He was troubled by our story and invited me to attend a meeting scheduled for tonight to share our DMC experience with other DMC doctors. I told him that I might, but I wasn't sure because I have been going to so many events and I'm exhausted.

Well, I emailed him this afternoon to say that I would come to the event.  It started at 6pm and when I showed up, I did not see the doctor who invited me.  Another doctor saw me and could tell that I didn't belong and started a conversation with me.  I explained that I had been invited and why the other doc invited me.  He was troubled by our DMC story and experience.  Others started arriving and could tell that I didn't belong including one of the assistants who asked me for my name.  A few minutes later two of the men came over to me and took me out of the room.  Perplexed, they asked me why I was there so I once again explained.  I let them know that I did not want to disturb their meeting and I wasn't even sure what I was doing there.  But after hearing my story, they asked me to stay and share for 10-15 minutes with the group.

One of the men who came to speak with me opened up the meeting and explained some of what they would be covering during their meeting.  The other man who spoke to me outside the room was a doc.  He then introduced me to the group and explained that I would share my story so I did.  I told them how we were denied treatment and how others at DMC had experienced the same.  I talked about how Rafaella's family had to fight to get heart surgery for Maristella.  Many of their reactions were of disappointment and I could see that they were troubled by these stories.  I was very respectful, but blunt and I pulled no punches.  I told them that I admire the hard work it takes to reach their position, but I also understand that they are practicing medicine and don't have all the answers.  I told them how much influence they really have and how people trust them.  I explained how we have tried to get parents out of hospital systems, but couldn't get the parents to leave because they trusted their doctors even when they should not have.  The doctor who introduced me then thanked me for sharing and said they would be in touch because he wanted to continue this.  He then explained to me that this group of doctors is an advisory committee to the president of DMC.  The president of DMC was the man who opened the meeting and had pulled me out of the room before the meeting.  The original assistant followed me out and got my contact information so she could get in touch with me.  By the way, the doctor who invited me never showed up to the meeting and now you know why it was so incredibly awkward (he's gonna hear about it :).  Even if he had been there, I would have felt awkward, but I knew God opened this door and I had to walk through it.  This group of doctors deals with adults and not children, but I may have just kicked a hornets nest.  I pray God continues in this and that this part of our story is just beginning.

By the way, Faith is doing well and is walking around right now in her gait trainer.  Of course, she is slamming into everything and destroying the walls in my house which drives me crazy.  I'm glad that she drives me just as crazy as my other children.  Also to update our first public speaking engagement of this type, we spoke to the Central Michigan Right to Life group last week.  We received a very good response from the crowd, and the next day I received an email from the state Right to Life offices which asked us to speak at their legislative day in Lansing on March 11.  We will be speaking right after the lunch to legislators and other directors for Right to Life of Michigan throughout the state.  God is certainly opening up doors.  We are made righteous by Him, and the steps of a righteous man are ordered of the Lord.

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

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.

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.

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.