HORSE PILL Update

Faith on our deck today.

SO yesterday we had Faith's hospital visit to have a pill inserted into her small intestines.  This pill can disintegrate so if it gets stuck, it will dissolve.  Well, I have not posted the picture that Jesi had me take this morning, but this huge pill made it through Faith overnight.  It was no fun to clean up the mess, but it passed through without any big problems.  Faith was uncomfortable at times, but now we know the camera pill can be inserted the next time she bleeds so we hopefully see the where the bleeding is occurring inside of her small intestines.  I would post the picture, but it is rather disgusting as I am sure that you can imagine.  The procedure was a success and hopefully will help us find a solution to this bleeding issue.  Faith has now had 5 blood transfusions.

One Hit Wonders

Faith is having a procedure done this morning.  They are going to insert a capsule that will take pictures of her small intestines. We are trying to find the source of her bleeding so pray that God works through these doctors.  This picture has our One Hit Wonder nurses who got Faith's IV into her in one shot. We always appreciate nurses like this.

 

 

A Little BUCKEYE Victor

We just found out that the University of Michigan Mott Children's Hospital is going to feature Faith in their Gift of a Bear program fundraiser this year.  Her story will be feature in a video like the one linked below.  They also will put her on a mailer sent out to between 30,000 and 100,000 people.  We are scheduling a photo shoot for this coming week.  The video shoot will probably be done in September.  Check out the links below to see their website and the type of video they will shoot.  This could come in very handy to help promote the Trisomy Clinic at Mott that we are working on with Dr. Glenn Green.

Gift of a Bear website:
http://givetomott.org/bear/

Gift of a Bear video:
https://www.youtube.com/watch?v=aW_1MJspy7M&feature=youtu.be

We Thought They Were Helping...

I was asked to write a blog on Slow Code for our SaveThe1.com blog.  Rebecca Kiessling sent the blog to LifeNews.com who posted it today.  It has been shared over 8,600 times as I am writing this.  If you would like to read it and share it, here is the link.



http://www.lifenews.com/2014/06/16/we-thought-doctors-were-helping-our-daughter-with-trisomy-18-but-they-were-slowly-killing-her/

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.