Reaching for the Hem of His Garment

Faith sleeping this morning with her bipap.

Well, here I am with time on my hands able to post.  The family is all gone this Saturday morning and headed in different directions.  Grace and Eli were thrilled out of their minds because they were headed to a class on Robert's Rules for meetings with their Nana.  Oh it does sound exciting.  Gideon spent the night with a friend for his birthday, and Hope is with Jesi at Upward Cheerleading.  I am stuck home because Faith has been bleeding again.  She is still sleeping...probably just tired from a lack of blood.  She started bleeding the other night; although, we are not sure what caused it this time.  We decided to start giving her watered down food again yesterday, but we should have waited to do so.  She had fresh blood in her diaper last night.  We keep her away from everyone during these times because her immune system is certainly compromised.  We continue to reach for the hem of Jesus' garment that this little girl will be healed of this issue of blood.

Jesi with Grace, Eli, Gideon, Hope, and Faith in front of the Michigan State Capital building.

Hope in the Senate Committee chambers just before the hearing started.

We were thrilled Thursday morning to learn that the Medical Good Faith Act was voted through the Michigan Senate Health Policy Committee by a vote of 7-0 with the two democrats joining our side.  I think this happened mostly because of Jesi's great performance (very proud of my wife).  We may see the bill hit the floor of the senate as early as this Thursday morning.  We have a bold republican majority doing many things not liked by the other side so I think our bill is not viewed negatively like it was in Minnesota because they have bigger fights on their hands.  Plus, I think, we might have found a good way to sell it.  Once we have it as law, I will share the bill.  The Michigan Catholic Conference wanted to rewrite the bill without mentioning "Medical Futility" of which I was unsure.  They did and both Jesi and I thought it looked pretty good so I sent both bills to Senator Rick Santorum to get his thoughts.  He liked the new version as well so Michigan Senator Jim Marleau's office did a final rewrite of the bill on Wednesday night and submitted the substitute bill on Thursday morning.  Once we get through the Senate, the bill heads to the Michigan House where our friend and State Rep Tom McMillin will help guide it through the house.  We are excited about getting this to Governor Snyder's desk for a signature.

SENATE COMMITTEE HEARING LINK

Jesi and I will be testifying Thursday March 7 at the Michigan Senate Health Policy Committee session at 2:30pm.  The hearing will be streamed so anyone can watch.  I am providing the link here to make it easy to find.  By God's grace, this will be the first step toward making the Medical Good Faith Act the law in Michigan.

http://www.senate.michigan.gov/tvschedule/tvlive.htm

Committee Hearing May Be Next Week

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.

MEDICAL GOOD FAITH ACT on the Move

We have gotten very good news this week regarding the Medical Good Faith Act which would require hospitals and doctors in Michigan to provide parents/guardians with their medical futility policies.  My state senator is Jim Marleau and he is sponsoring the bill.  Senator Marleau is the chair of the committee which handles these medical issues.  I also have the only pro-life democrat senator as a co-sponsor, his name is Tupac Hunter and he is also the minority leader.  The bill was introduced as Michigan Senate Bill 165 on February 7th and was referred to committee.  We should receive a committee hearing on a Thursday at 2:30 sometime in the next 4 weeks or so. 

My senator's office and Senator Hunter's office have been actively working to get support for the bill.  We have Right to Life of Michigan and the Catholic League backing the bill.  I am becoming increasing encouraged that we will get this bill passed since we have a dominant republican majority in both the state house and senate along with a republican governor.  If you all noticed, we have many of the same people serving who just passed Freedom to Work in Michigan so they have more than enough courage to vote this bill into law.  My goal is to get this passed into Michigan and begin working with others to get the Medical Good Faith Act passed into law throughout the country.

Faith update...she has been doing well, but is currently a bit under the weather.  She is really walking well and if you haven't seen the video my daughter shot, I have attached a link for you.

http://www.facebook.com/groups/T18Mommies/10151420912689551/?notif_t=group_activity

HAPPY 4TH BIRTHDAY!!!

Today is Faith's 4th birthday and we are in Ohio.  It is a great day and she is happy to be here.  She loves to walk in her gait trainer as you can see here.  We are thrilled to see her continued progress.

Medical Good Faith Act...getting closer

Faith has been doing pretty well.  Jesi took her to the ER on Thanksgiving Day Eve, and I met her there to take her place and spent the night with Faith in the hospital.  This has become an annual tradition as I have spent the last 3 Thanksgiving Days with Faith in the hospital while Jesi took the kids to my in-laws for dinner.  I was able to bring her home just before noon on Thanksgiving.  She was at the very early stages of pneumonia.  Jesi caught it quickly so we got our meds and got out of the hospital quickly, and Faith is doing very well.  She is sitting on the floor right now jabbering away, and earlier she was walking with her gate trainer (all by herself when she is on the carpet).  She is cute, but so little for a girl who will be 4 years old this month.

Now to my update on the Medical Good Faith Act...We were able to get a bill created in both the Michigan State House and Senate.  It is during a lame duck session and the agenda is already set so we won't make it to the floor for a vote, but I am confident that we will get it reintroduced in both chambers during the next session.  I have already been asked to follow up in mid-January.  I am looking forward to this and believe we will succeed.  I have attached the first page of the House bill.  I would do more, but seem to have run out of space with this lovely blog space.

This bill will require hospitals and doctors to reveal their medical futility policies so parents can make informed decisions about where to receive treatment.  This will help those of us who have been lied to about available treatments for our children because a hospital or doctor simply decided on its own not to offer medical help because the treatment has been deemed futile.  Thanks, but we can decide that on our own.

DIAGNOSIS - Faith is Home

It was late to leave the hospital, but we are home with Faith.  Our procedure was supposed to start at 12:30p today, but did not start until 4:15p.  The best part, no exploratory surgery was needed so she only had the colonoscopy.  GI Doc said there were large blood vessels in her colon which are bleeders.  The one problem...she had quite a few so he doesn't know if it is one of them or several bleeding and he cannot correct it.  If she bleeds again, he can do a flush and go back in with a colonoscopy to see any places bleeding which can then be cauterized.  We are happy to have a diagnosis finally and now we know that our olive oil probably did help her bleeding stop or certainly slow dramatically.  She also had a number of lymph nodules in her intestines which were swollen.  The doc thought it might be from an allergy so we are going to get her tested for allergies.  We had given her some apple cider, and now we think it is possible the cider sparked this if she is allergic to apples like her grandmother is.

Two of the T18 families that we sent to U of M were there so it was like a T18 convention at Mott Children's Hospital.  Mylah is still there recovering well from heart surgery, and Ameir was life-flighted there last night with rsv/pneumonia.  On a very positive note, he seems to be a little better and slowly on his way to recovery.  Please keep both of these very little ones in your prayers.