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.
This blog was started to document our walk through jaw distraction surgery and how it is helping Faith overcome some of the serious issues she has faced including obstructive sleep apnea. After researching jaw distraction surgery, we could only find one other T-18 child to have this procedure done. We hope our story will help other families dealing with Trisomy 18 and we look forward to the day God completes the work He has begun in Faith.
Are there any updates to this bill since the blog was posted. We are so very interested in Faith's health progress and all the great work you are doing. We are keeping Faith lifted on our prayer lists and we love hearing how God is working in her life! May God bless you all abundantly!
ReplyDeleteMitch and Donna Ambler
Lawrenceville, GA