Saturday, April 12, 2014

AMAZING TED VIDEO about medical innovation

Check out this amazing TED video about medical innovation. https://www.youtube.com/watch?v=KL8rQp8QxNY 
Dr. Glenn Green is Faith's ENT at Mott Children's Hospital. He did Faith's jaw distraction, and here is a before and after picture of her results from surgery which had a similar impact on her life as the boy in the video. http://littlefaithtobigfaith.blogspot.com/2012/01/jaw-distractionbefore-then-after.html 
This is why we need to fight to keep our American health system and remain the innovators. We can only do this if we LOVE and RESPECT life.  Our current nationalized health will only take us off this path of leading the world in medical advancement.  I don't say this out of hyperbole, rather experience.  When Faith was born, the first hospital told us that we would have to go before an ethics committee to ask for permission to have heart surgery for Faith.  Not only do these panels have the ability to withhold care, but they often don't let the patients / parents be involved. They also have secret ballot votes when deciding the fate of the patient.  I don't know about you, but I call this a DEATH PANEL.  We opted to change hospitals and not work with that hospital any longer.  We have friends who have a child like Faith and they went through this horrible process.  By fighting, they got surgery for their little girl which was successful.  Even after success, they were told "don't think that we will do this for other Trisomy 18 children."  This particular hospital was chosen by the Obama administration as a "model" hospital to help launch their nationlized health care.  

If we do not fight, we WILL see far more people dying.  We, personally, have watched 2 children die because hospitals with this philosophy deceived the parents to think there was no hope.  Right now, we have the ability to change hospitals and seek treatment, but if the Obama administration has its way, we will ALL be forced to use hospitals like the first "model" hospital where we faced the withholding of treatment. 

Monday, December 23, 2013

THE BIG 5......HAPPY BIRTHDAY FAITH!!!!!


Faith Victoria Smith in December 2008 not long after being born.

The Volcano kept her attention, but it was really everyone else who got to enjoy eating it.
She really had a great time walking around the restaurant.
Faith kept looking up at the ceiling which was quite cool at the Rain Forest Café.
Hope is helping Faith walk around Rain Forest Café earlier this evening.
Momma did Faith's hair for her birthday today.
Loving that cotton candy at yesterday's party.  Grace continues to give her more.
Faith loves cotton candy and can handle it without gagging.  Her palate is too high to swallow normally.
Enjoying the candle for her 5th birthday party at home yesterday.
 


She actually tore off some of the wrapping paper from her present this year.

Doesn't she look like a little girl who will never enjoy life and will only be a burden to her family?  The geneticist warned us that this little child would destroy our marriage.  Well, he's right....without Christ.  That is what is great about serving Christ...He makes a way where there seems to be no way.  Faith has only made our marriage and family stronger because we put our trust in Him.

5 years ago Faith was born on December 23, 2008.  We actually chose the date for inducement.  We could have picked Christmas Eve, but it is also my birthday and I wanted her to have her very own day so we picked the 23rd.  We spent that Christmas in the hospital with specialists coming to see her.  The original cardiologist came in on Christmas Day to examine her.  He discovered several holes in her heart including one so large that the blood flowed through it without causing a murmur.  Well, they didn't know at the moment that Faith had Trisomy 18 so they took care of her like a little girl.  It wasn't long after this that we got her T18 diagnosis and quickly found out how the medical industry would not help her.  This began quite the journey and learning experiences over the past 5 years.

We are so grateful to God for his faithfulness and continue to pray that He will complete the work which He has begun in Faith.  HAPPY HAPPY HAPPY 5th Birthday Faith....we love you and would go through it all again!

Wednesday, November 13, 2013

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.

Thursday, September 26, 2013

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.

Thursday, September 12, 2013

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.

Tuesday, June 11, 2013

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.

Monday, June 10, 2013

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.