On The Road Again

The Medical Good Faith Act is on the road again.  I found out today that a schedule change moved our bill up on the schedule.  It was expected to be voted on by the Michigan Senate next week, but today they decided to move it up and voted on it today.  This vote was to reaffirm the language which was changed in the House vote.  Well, the Senate voted 36-0 (2 absent senators) to pass the bill and put it on the road to the governor's office for his signature.  This could happen as early as next week.  We are trying to arrange a photo op with Governor Snyder so we can use the picture for publicity purposes so pray that we have favor with this.  The only problem is my work schedule next week.  We have a pastor luncheon at work which is a gigantic station event and will own my week until Friday. 

Faith is sitting on my lap jabbering as I type this.  She thinks that she is helping me type with her hands resting on my hands as I type.  Reminds me of a note Rick Santorum sent to me saying that Bella was doing the identical thing.  It always amazes me how many things these T18 children do the same.  She really thinks that she is being funny right now smacking the computer and keeps clapping for herself.  In fact, she has now messed up my computer so it isn't typing correctly....this child.  Below is the link with the bill language and status....

http://www.legislature.mi.gov/(S(ilqnka451wx2gy2ylx31sg55))/mileg.aspx?page=GetObject&objectName=2013-SB-0165

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.

Orthopedic Appointment

Faith continues to do well since her last bleeding episode back in early February.  Jesi took her to the orthopedic doctor on Tuesday.  She wanted them to check her back because Faith was having some trouble standing up.  She would lean over every time we had her standing.  This hasn't been happening lately which has made us wonder if she had injured her foot or the ear infection she had caused the problem especially since the doctor did not see any real change in her back and said he hips were fine and not out of alignment.  Since she can't talk and tell us that she is hurting, we just don't know what is happening sometimes.  It really requires some thinking skills to figure this child out.

After having Rick Santorum be the only other Trisomy parent we had met, this past week we met 2 other Trisomy parents.  We had the privilege to meet Mina, Juwan, and Mylah, and Jesi got to meet Kathleen McCartney and her son.  Grace was able to babysit for her.  So it was a busy week.

Overall Faith continues to do well, and her feeding issues have improved, but it is still not easy feeding...just easier than it was.

New Trisomy 13 & 18 Video with Children including Faith

This is a video put together by Jill DelSignore who is another parent of a Trisomy child.  It includes photos of children from all over including Faith.  She is in it toward the end several times.  These photos are great, and I hope you enjoy it.

Jesi Smith on Janet Mefferd Show

Jesi was interviewed today by Janet Mefferd on her national Christian radio program.  This program is syndicated by Salem Communications, the company that I work for.  She is out of Dallas and broadcasts on stations across the country.  It was live during the first hour of her show at 1:30pm central time and was broadcast on Faith Talk 1500, my station, at 5:30pm.  The first thing you will hear is a promo that ran overnight and throughout the day on Faith Talk 1500 in Detroit.  This promo was also sent to her stations across the country.  Then the interview plays.  Janet also promoted her interview with Jesi on the front page of her website.

On a totally separate note, Faith has been feeling much better.  When we were doing a high calorie diet, we gave her coconut oil or olive oil.  Jesi decided to include olive oil in her feedings again.  She started very recently and since then Faith seems to have much easier bowel movements.  In fact, her energy level has increased dramatically as well.  She was jumping up and down in her stander the other night.  I should have gotten video of her.  We will see if this continues to work.  The oil never had this effect before, but with the different food, maybe the oil is providing a new result.  We will keep a close watch, but it will make me wish that we had given her the oil sooner if it continues to help her bowels work better.

Back Home and Back in the News (Lima News in Ohio)

Faith is back home from the hospital.  She came home Friday evening even though she has bled a little more, it was not significant enough to keep her in the hospital.  She is happy and feeling pretty good and the bleeding appears to have stopped .  It doesn't look like she will need a tranfusion this time which is good and at the same time we were hoping she would bleed enough to find the source.  Our little "woman with an issue of blood."  God continues to give us opportunities to allow Him to work in us and through us.

Rick Santorum spoke last night in my home town of Lima, Ohio.  When we learned about this, we contacted the Lima News to see if they would be interested in our story.  We interviewed with Dave Trinko, New Media Editor, Wednesday evening and the story is on page 2 of the Lima News today, the Sunday edition of the paper.  The lead story is obviously the visit by Rick Santorum followed by our story with the newest pictures of Faith, the Smith clan, and Rick Santorum from a week ago when he was near us here in Michigan.  Jesi noticed that Rick looked so much happier in the Lima News photo with his wife beside him.  Not that he was unhappy, but it must get a bit lonely even with all those people around him...seems obvious that he adores his wife.  Ohio's primary is Tuesday so this is good timing.  Here are links to the story.

The column on their website: http://www.limaohio.com/articles/smith-80252-santorum-faith.html

The column as it appeared on page A2 of Sunday’s newspaper: http://epaper.limaohio.com/Olive/ODE/LimaNews/LandingPage/LandingPage.aspx?href=TE1BLzIwMTIvMDMvMDQ.&pageno=Mg..&entity=QXIwMDIwMg..&view=ZW50aXR5

My mom was able to meet Rick and Karen Santorum for a minute last night at the event which was fun for her, but it was packed with around 1,500-1,800 people so not much time.  My older brother Gene is a lieutenant in the Ohio State Highway Patrol and was on Rick Santorum's protection detail.  He spoke to Rick for just a second, but was able to get a photo with Newt Gingrich and his wife.

Photos with the President....???????



Smith Family Photo with Rick Santorum

Grace in background

Meeting the President (titled by photographer)

Taking It On The Chin (title by photographer)

THE SMILE (title by photographer)

Close up of Faith and Rick Santorum

The photos are with Rick Santorum (hopefully our next president) on Saturday Feb 25th at the Americans for Prosperity event at San Marino Club in Troy, Michigan.  I described our experience in the previous post so feel free to read about this opportunity for our whole family to meet Senator Santorum.  I am grateful to Chris McCoy for helping make this happen and the rest of the Americans for Prosperity folks for working to get us into the VIP area which was a bit of a chore and a little embarassing.  We basically walked right across the front as Rick spoke to the crowd and I kept running over feet with Faith's wheelchair.  I also want to thank Josh Nunez for taking these photos and graciously providing them.  I want to share his short email because I thought it was so kind.

Brad,
Thanks for the privilege of sharing these with you.  For my fellow photographer and I, it was the highlight of the day.

God has given you a very special daughter, but I saw a beautiful example of love in your other children's joy in their sister's moment in the spotlight.

God bless you,

Josh

Faith, Jesi, and I had obviously met Rick Santorum previously, but I think the rest of our children will always remember this opportunity fondly.

Rick Santorum...Michelle Malkin...Fun Morning

Americans for Prosperity Michigan is having an all day event as I write this.  Last night I went to the VIP event and met Andrew Breitbart and Irish filmmaker Ann McElhinney.  They were talking about Rick Santorum speaking at today's event so needless to say I weasled my way in...or I just asked if we could drop by to see him.  So this morning, we stopped by the San Marino Club in Troy for just a little while at about 10am while Rick was speaking to the crowd of 1,300, and my AFP friends took us into the VIP area to wait for Rick to finish speaking.  When he saw us, he was all smiles to see Faith and greeted us warmly.  Typical T18 dad, he began looking for some Purell to clean his hands since he had been shaking hands...he wanted to pick Faith up and hold her.  Once he got her, I wasn't sure we would get her back. :)  Unlike most folks, he knew what to do and quickly had her smiling while grabbing his chin and face. 

Once again, he had an article that he wanted us to read so he had his campaign aides find his IPad.  The Time Magazine article is called Rick Santorum's Inconvenient Truths by Joe Klein.  It is subscriber access, but here is the link  http://www.time.com/time/magazine/article/0,9171,2107519,00.html
His aide read the article to us which talked about how Rick's stand is inconvenient for many by raising the standard.  Klein points out too many parents are not willing to sacrifice for their children.  This is a liberal writer, and Rick was quite moved by the article.  He said the article made him cry and as he described the article to us, tears began to well up in his eyes.  RON PAUL...Rick Santorum is NO fake, but I'm beginning to think you are.  I have little patience for this garbage.

I am waiting on pictures because the flash started and cameras rolled as soon as Rick picked Faith up.  We will post the pictures when we have them.

Getting Over A Cold

We have had a bit of sickness in the house for the past several days, and Faith seems to have gotten a little dose of it.  Gideon has been down for a couple of days and seems to be more affected than Faith.  It has made for several difficult nights of sleeplessness for us, but Faith is happy right now.  We pray that she will sleep through the night tonight.  Since the RSV and last bleeding episode, we have not gotten back to regular feeding.  We have been stuck on slow continual feeds.  Faith has been throwing up more than normal today, but we are pretty confident it is the illness causing this.  She looks so cute over there with her little rosie cheeks.

Faith has not had any bleeding episodes since the one in January.  We pray that our little woman with the issue of blood can just touch the hem of his garment so we don't have to go back to the hospital for this.

Well, we never quite connected with Rick Santorum at the political event as I was late to it and Jesi wasn't really sure where to go, but they did get to see Rick speak.  We will just have to catch him the next time he is in the area which may be soon, but if not soon, maybe the general election...we will see.  Tuesday is our big day for the Michigan primary which should prove quite pivotal.  Currently it's a dead heat.

 

TV out...at least for now

I got a call yesterday at 5pm from the producer at WDIV Channel 4.  Their schedule was just too full and they couldn't get a reporter out to see us last night.  They needed to meet us during the day to easily fit us into their schedule, but my job makes that difficult.  So the kids were quite bummed that they can't watch themselves on TV, especially Gideon.  The kid was almost offended...kind of funny.

Rick Santorum is speaking at an event tomorrow night that I will be attending.  Then on Friday Rick will be speaking at the Michigan Faith and Freedom event in Shelby Township.  Our friend runs the group and invited us to attend it so he can introduce the family on the stage at the end of the event.  Jesi is taking the kids and I am sure Rick will enjoy seeing Faith. 

Faith is doing pretty well today.  She is laying beside me right now happily jabbering.  You can see from the picture above how happy she is.  Jesi is getting beaten up by Faith as she is kicking her feet, and Jesi wisely sat at the end of the kicks.  We have been slowly ramping up her feed rate.  We had tried moving it up a little to quickly and she didn't handle it well, but she is much better since we backed off some.  It is so much fun to watch her when she's not crying...well usually.  She did wake us up at 4am this morning, but she wasn't crying or in pain.  No, she was playing.  She was talking and moving around...in fact at one point, I wondered what was going on over there.  It sounded like she made the crib jump off of the ground.  At least she wasn't crying, but I kept asking her to go back to sleep.  We could have just gotten up though because we never really got back to sleep.  Oh wait, Jesi did, but then she is up all the time with Faith.

WOW...What a day...And it's continuing

Well, the day started off with our Detroit Free Press story as the top story, front page, above the fold.  I was stunned to see the placement of our story.  Then as I drove into work, I was listening to my station, News Talk 1400 The Patriot, and Bill Bennett was talking to Byron York about Rick Santorum's chances in the upcoming Michigan primary.  I decided to call into Bill's show to kick in my 2 cents.  His producer put me on the air and I had a conversation with Bill about how ticket sales for the Thursday night Lincoln Dinner with Santorum jumped in sales when he won 3 states in a night.  I then got to share about the Detroit Free Press article.  It was a nice conversation, and on a national stage with Bill Bennett's Morning in America.
 http://www.freep.com/article/20120213/NEWS05/202130359/Rick-Santorum-s-advice-helps-metro-Detroit-family-with-Trisomy-18-child

Later in the day I received a call from a producer at WDIV TV Channel 4 Detroit.  They would like to feature our story in the news so they are scheduled for a visit with us tomorrow night.  Of course that hinges on the news of the day, so we will pray for a slow news day. :)

Next, Jesi called me to tell me that a reporter from Mail Online (Daily Mail) wanted to cover the story also.  Grace put some pictures together for her, and she quickly wrote a story.  I have provided the link to this story.
http://www.dailymail.co.uk/news/article-2100542/Rick-Santorum-helped-save-child-disorder-daughter-diagnosing-sleep-apnea.html

When I arrived home, I learned from Grace that Rick Santorum posted the link on his presidential campaign facebook page.  There are some interesting comments on the thread, and some very nice comments.  It is amazing how fast a story can spread...although we are trying to spread it.  I have been in email contact with Senator Santorum, and the more I communicate with him, the more I respect him.
http://www.facebook.com/reqs.php?type=1&fcode=f9e3e84a9&f=1221683396#!/RickSantorum

We want to thank Kathy Gray and Eric Seals from the Detroit Free Press for their great work on this story.  We appreciate their ability to tell a story and stay true to it.  I also appreciate the editors who helped make this story happen as well.