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. 

Molly and Her Jaw Distraction

Below is a post with an update on Faith, but in this post, I am focusing on a little Trisomy 18 girl named Molly Miller who just had a jaw distraction.  Her surgery was done at Primary Children's Medical Center in Utah by Dr. Grimmer.  I have been very impressed with how well her surgery has gone.  She was in the hospital for a few days, but is already home.  She will finish distracting then they will remove the portion of the distractor which is turned so the bone can heal and Molly will have a longer jaw.  Her distractors are much different from the ones Faith had.  Molly's distractors are not as visible and are mostly inside her jaw.  This will give her less visible scars, and she even looks pretty comfortable.  I will try to follow her progress for you and parents who have Trisomy 18 children that want to learn about jaw distraction for their children.  When we first looked into jaw distraction for Faith, you could find absolutely nothing on the web about Trisomy 18 and jaw distraction.  Now when you do a search of T18 and jaw distraction, this blog appears first.  So I would like to follow the stories of children like Molly to show more parents how this procedure can change the lives of their children for the positive and keep information on jaw distraction easy for T18 parents to find.  Faith is a dramatically different little girl since her surgery, and I am betting the same for Molly.

Here is Molly with her dad before the surgery.

This is Molly after surgery and still intubated.

Here is a side view of the internal distractor.  The internal allow for less scars, but the external distractors like Faith had allow for better ability to manipulate the jaw in case of problem...blessing Faith had the external one's so it could be manipulated.

This is a bit blurry, but you can see the incision below her ear near the back of her jaw.  This is where the distractor is turned each day to allow the device to move her jaw further out.

This is Molly starting to get happy again even with the jaw distraction.  It just doesn't get more adorable than this.  Molly has an ng tube in her nose to help her eat.  She stopped taking a bottle after the surgery, but I expect she will again use the bottle and have an easier time eating with her jaw the proper length.  You try eating with a short jaw...pretty tough.

Faith Sleeping Away Today

Faith is sleeping in this morning.

This is how cute she is though when sleeping well.

Faith has really been feeling better recently.  Last night she started coughing again so she is probably fighting a little something.  Hopefully she will sleep it off.  Her bleeding issue has not come back yet so we continue to pray that her intestines continue to work more smoothly.  I need to capture her on video when she is hopped up on energy so you can see how funny she is.  For those who haven't seen a Bipap, I added the top picture so you can how Faith sleeps at night.

One of the other Trisomy 18 kids, Molly who we have met through the web, just had jaw distraction surgery and appears to be doing very well.  I am very interested to watch her progression because I think it can make such a difference in these children.