Friday, May 25, 2012
Faith is BACK Online...Enjoying the music
I know...I know...it has been ages since I posted anything about Faith. I have been crazy busy and have had very little extra time, but this is good because Faith hasn't totally dominated our time which means she's feeling well. She still has feeding and digestive issues, but they are so much better than they had been. In fact, we have been letting her sleep without the bipap which is nice for her and us. Faith continues to feel better, and I hope you enjoy this video. She entertains her siblings, but you can tell she enjoys music. This video is from the OHMI (Oakland Homeschool Music) concert the other night.
I am also working on an idea for a Michigan Law. I would like to get a law passed to require hospitals to reveal their medical futility policies. I am sure they won't like it, but this is desparately needed. I am not trying to force a change in their policies, but people should have the right to know what service to expect from a hospital. Obviously we have had problems with this, but another Trisomy 18 child born in our area not too long ago had a problem. The doctor told the mother during labor that he would not resuscitate the child if she needed it. This is pathetic...tell us upfront so we can go somewhere else. I think the free market will correct this problem just force them to be transparent.
I have been able to get the ear of our lieutenant governor and I will keep in the ear of my representatives because this just makes sense and will save lives. I think that I have come up with a good name for it. You have to tell stories the right way so I would like to call it the Medical Good Faith Act. We can tie Faith's face to it so there is a real person attached, and we are simply asking them to act in good faith. Any support from MI residents would be appreciated.