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.

The DETROIT FREE PRESS ARTICLE is out

I won't ramble...just watch the story.  Right now it is the top story.   http://www.freep.com/article/20120213/NEWS05/202130359/Rick-Santorum-s-advice-helps-metro-Detroit-family-with-Trisomy-18-child

The FREEP visited our house...huh?

(This post is by my 13 years old daughter Grace.)

Today we had Miss Kathleen Gray, a news reporter, and Mr. Eric Seals, a photographer, come over. It was an interview for the Detroit Free Press. They heard about our Rick Santorum story, below, and wanted to do an article about it. Mom and Dad sat on the couch with Faith and told our story. The rest of us sat around for about 45 minutes. Then the others got bored and went upstairs while I stayed down to take video and pictures. After they finished we had a family photo shoot and then Mom, Dad, and Faith did one by themselves. The article will be in the Detroit Free Press on February 13th, 2012. You can also see it online on the 13th. Click for the Detroit Free Press website: RIGHT HERE!!!.

Make your own free photo slideshow February 3rds Posting: CLICK HERE!!! Faith is tired after smiling all day for the pictures.

By: Grace Smith

Now That's Some Dancing Faith

HOME...Yet No Resolution

Faith was dismissed from the hospital today and is home tonight.  She is clearly very happy to be home.  It is always funny to see how much she likes coming home.  In fact, it is hilarious that people are moronic enough to tell people Trisomy 18 children will never recognize anything or communicate.  These people have absolutely no clue.  I arrived home and walked in the door.  When I walked in Faith started bouncing up and down and smiling because she knew I was home.  Again, I could repeat my previous sentence.  I should, but I don't have a lot of patience for people who denegrate my daughter.  I certainly don't expect others to see her as the same because she's not the same.  However, I do expect others to see her as a human being who is worthy to live, and when they don't, I can get pretty - well, I will leave that to your imagination.

The doctors decided along with us that the best course of action would be to wait until Faith has another bleeding episode to try to find the source.  We went to the hospital as soon as her bleeding began, but you know how they want to do tests until they have more information.  Well, some of the tests were simply too late because the bleeding had stopped.  Now we will immediately take her in if this happens again, and they will test her without waiting on her CBC.  This is what we wanted to happen this time, but it's just how they roll and sometimes you have to roll with them.  The more they see how well that we know our daughter - the more they listen to us.  So the trip wasn't a total waste.  Anyone who has dealt with anything like this knows that we as parents have to grow to trust our doctors, but the opposite is quite true as well because doctors grow to trust us as parents.  The more they are around us; the more they listen to us and will act upon our observations.

The timing of Faith's dismissal from the hospital was convenient because Jesi was able to take Faith to her therapy appointment today which is also in Ann Arbor.  This is a long drive, but Jesi said this therapist had more success with Faith than any of the other's who have worked with her swallowing so the continued trips will be worth it at least.

Loooonnng Day of Testing....Day 4 (of this visit)

Today began with new hemoglobin levels of 7.3 which meant blood transfusion time.  This is Faith's 4th blood transfusion since October.  They gave her 185cc of blood.  Of course, it made her perk right up like giving her a caffeine pill.  However, the fun was just getting started.  First, they tried to place a capsule in her stomach to see if it would pass through her intestines.  They were not even able to get the capsule down her throat likely into her stomach, but they were able to scope further down than ever before.  They did find a little nodule and took a biopsy.  They don't believe it is the source of the problem.

Tonight they did a red blood cell tag test.  They take blood out of her and tag the cells nuclear material then put the blood back in so they can watch the blood.  This test is supposed to find active bleed, but of course, Faith doesn't make this easy since her bleeding is intermittent.  That test just came back negative so no current bleeding which is good and bad. 

All in all it was a long day of testing.  We will have to ask some good questions because the next likely step is exploratory surgery which we would rather not do again.  This whole thing is troubling simply because it has been so difficult to figure out.  It is a good thing that we have a God who is able to do exceeding, abundantly, above all we can ask or even think.

WHITEY...but still cute

Faith is a bit pale as you can see, but she is doing well.

The new rooms at U of M Mott Children's Hospital are large, and the boys always dress for the occasion.

My beautiful wife gets lonely without us there (especially me).  Of course I miss her tremendously and she wants you to know that I sob uncontrollably when she is gone.

Faith had a CT Scan today to see if they could find any problems or hopefully see where the bleeding might be...but it was not to be.  They did not find the bleeding, but happily they did not find anything else either.  Tomorrow she will have a tablet surgically put into her stomach.  The hope is that it will work its way easily through her bowels.  If it does, they will try another tablet with a camera.  There is a concern that this camera might get stuck in her system; hence, the first tablet which will dissolve if it gets stuck (hopefully).  There are not many good options for little people to have their small intestines examined thoroughly. 

Faith's blood loss seems to have stopped for now and begun to build back up.  Her hemoglobin was down to about 8.3, but was back up to over 9.  When it drops below 8, they will give her a transfusion.  We would like them to give her a bit of blood anyway.  She is much more susceptible to things when her blood level drops, but a transfusion is like putting adrenalin into her.  Her energy level rises very quickly.  It is quite funny to watch her get blood, and of course, it is nice to see color reappear as well.

Super Faith...Super Bowl

Well, the kids and I have come to the new Mott Children's Hospital to see Faith and Jesi.  I am sitting beside Faith typing on a wireless keyboard to make this post while watching it on the big screen tv.  They have internet and other entertainment connected to the tv with bose audio overhead.  Not bad, but they don't have an HD signal for this giant tv....hmmmmm.  This will come in handy as Jesi can stream audio through the tv and listen to radio, etc.  Faith loves music so this will be very nice.  If I just had a way to upload pictures, I would be all set for posting.

Faith is still bleeding, but I hate to say this...not at a fast enough rate.  Her bleed rate is too slow for the test to work.  I love the staff here though.  We were talking to a doctor who was brainstorming other ways to check her, but he isn't sure if they will want to do his idea.  Basically, he wants to give her meds to help her bleed more while in the PICU where they can control the bleeding, but you can imagine that may not fly.  We appreciate his thinking and will see where this goes.

Jesi and the kids just got back from the family play area and football experience.  They loved it except it was all Michigan themed which made them a bit sick to their stomachs. :)  I have raised them well.

We are going to watch the Super Bowl here.  It made me begin to think how many events that we have spent in the hospital with Faith.  We have been here for Thanksgiving, Christmas, my birthday, our anniversary, and now the Super Bowl.  We also were in the hospital for the Ohio State - Michigan game for Gideon's birth.  I had to get that one because Gideon wanted to be mentioned in the blog.

Update...New Mott Hospital...Day 1

Well, the children and I are home while Jesi is with Faith at the new U of M Mott Children's Hospital.  They just opened, but amazingly this brand new hospital does not have bathrooms in the rooms.  We thought for sure they would like they do at Beaumont Hospital Royal Oak.  Jesi tells me they do have large screen TVs so we may go there tomorrow and watch the Super Bowl with Jesi and Faith.  You would think that they would want bathrooms in each room to keep the germ factory of publicly shared bathrooms to a minimum.  They go through all of this craziness to keep germs from spreading and then have only a few bathrooms for all of the parents and families to use...nice central germ location.  I am curious to see the new hospital, but only curious as I didn't really want to go.

Faith is doing pretty well, but they haven't done too much yet.  Our U of M GI doctor visited Faith today.  We had a March appointment with him which we tried to move up...not the best plan for moving the appointment up, but it is effective.  The plan is to keep tabs on her hemoglobin level.  If it continues to drop and at a fast enough rate, they will do a procedure where they look for the bleeding sight by going through her veins.  I am not sure how they do this, but she has to be actively bleeding and at a fast enough pace so the test can determine where the bleeding is.

The next option is to put a pill in her to see how the pill goes through.  If the pill cannot make it all the way through, it will dissolve, but if the pill can make it through then we might be able to give her the little camera pill.  The first one is simply to determine if she can get the camera pill through her intestines.  If she can, the camera would take lots of picture as it goes through so they can see the inside of her small intestines to determine where the bleeding could be originating.  This would be fabulous if it is possible, but they just don't have many good options for little ones.  There are lots of options for adults so I ask myself with all the crazy technology we have...why not make the camera even smaller?

Driving to U of M Mott Children's Hospital Right NOW

What a day....  I got a call earlier from Jesi and while we were talking, she and the kids were rear ended by a car.  No one got hurt, but our Odyssey's rear door was smashed and will not open.  This is quite troubling because Faith's wheel chair is in the back of the van...still not sure if it has been damaged.  Regardless, we can't get it in and out.  Well, that is only the start.  I called Jesi back as she was driving home from the wreck to tell her to flip on the Michael Medved show as he was talking about Faith (read the post below for that story).

When I arrived home, Faith was having a good time.  In fact when they were hit by the car, she started laughing...she loves loud sounds.  All of a sudden she started crying in pain so I began venting her, but it just continued until we began to smell, well, you know.  The odor was strong and not really something we wanted to smell.  When we checked her diaper which had overflowed, it had blood in it.  Jesi has a bag packed so she grabbed all of Faith's stuff while I cleaned her up.  Then we loaded them up in the smashed van and sent them to U of M Mott Children hospital which is about an hour away.  Jesi is currently on the road driving to U of M.  We need to get her checked quickly to see if they can find the source of the bleeding while it is active.

We will update as we learn more...

Faith, Rick Santorum, and Michael Medved...What do they have in common?

Well, it has been quite a week.  I won't go into all the crazy details because much of it was craziness at work, including the live remote we had yesterday with Michael Medved that almost did not happen.  About the time I was going to have to jump in the car with Michael and head back to the studio at 1:30pm for 3pm broadcast start time, our ops manager was able to connect and get the show on the air.  Hallelujah...it was a great broadcast and nice evening event.  After the event, I spoke to Michael for a bit and right before we left I told him about Rick Santorum and Faith.  How Rick helped save Faith's life because of his advice from experience with their daughter Bella.  Michael was impressed with the story and asked if he could repeat it.  He said he would not use names, but I told him to go ahead and use names as we want to promote the story and obviously Trisomy 18.

Well today at 5:15pm, I was sitting in my office working and listening to the Michael Medved show when Michael began to tell the story.  He did a pretty good job especially considering he was doing it from memory.  I had sent him the 2 pictures above and wrote the story in the email so he could have it for reference, but my contact is his producer, the pride of  Hillsdale, Jeremy.  It just so happens that Jeremy was off today so Michael didn't get my nice little written recap.  It was quite fun to listen to though and be reminded that we live in the greatest nation on God's green earth. :)