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.

Faith after her bath

Faith is having a colonoscopy this morning. Depending on what they find, we may have exploratory surgery as well. We are praying for them to find the source of the bleeding. We do have a concern about anesthesia because her hemoglobin level is only 8.5 and usually runs over 11. Not having the full blood level is troubling when facing surgery.

UPDATE...Lost Lots of Blood just before ER

Faith lost quite a bit of blood just before she arrived at Mott's ER.  She almost definitely will get a transfusion in the morning...I hate that they always wait when we know she needs it.  They have already done an ultrasound and will be scoping her in the morning.  Oh Lord, help the doctors find a cause or see where your healing took place.  It is so strange that this happened once a month for 4 straight months then stopped for 7 months and then wacks us upside the head again.  Faith had cold hands and feet, but she still has pretty good spirits.  By the way, thanks to all those who donate blood...it truly is a lifesaver.

Headed to ER and likely PICU

It has been since July that I have posted because of computer issues and our busy schedule, but I must post tonight.  Jesi headed to the U of M ER with Faith about 7:45pm this evening.  Faith was in good spirits and seemed to have good energy, but last night I thought there might be some blood in Faith's stool.  Today it was confirmed.  Forgive the details, but there are some parents who may have experienced this or will and might be able to offer suggestions.

Faith's stool was different than the previous times we had blood in her stool.  Last time was way back in February - it is sad when 6-7 months seems like a long time to stay out of the PICU.  So her stool was bloody, but also had some mucus in it which was also bloody.  I changed her diaper right before she left and it looked to be almost pure blood with some mucus in it.

Other than being sick a couple of times Faith has been doing well since our last February blood issue which resolved and had not come back until now.  The only thing we did differently was to give her some pasteurized cider.  Who knows?  We will try to keep you updated and appreciate any and all prayers.

Good Faith in the Pool and State

SPLASH!!    SPLASH!!  SPLASH!!!

Faith loves to play with her big sister Hope.

And to think...it is only 100 degrees...just fine as long as she has water

Faith was sick for about a week, but we threw the bipap back on her and gave her some breathing treatments.  Now she is feeling much better and had a good time playing in the crazy heat.  It is so funny to watch how she checks out in the heat until we pour water on her feet or get her in a pool.

Progress is being made on our attempt to pass our Medical Good Faith bill in Michigan requiring doctors and hospitals to reveal their medical futility policies.  We have a republican in the Michigan state house who is submitting the bill and a democrat in the Michigan senate who is willing to co-sponsor a bill.  I pray God blesses our work and those who are willing to help us.

Faith Loves to Walk...check out her new gait trainer

Here Faith is learning to walk in her new Crocodile Gait Trainer.  After the news article in the Detroit Free Press back in February, I received a call from a man in Canada who read the article.  We talked for about an hour and shared a number of things with each other.  He has a 10 year old daughter with Full Trisomy 13 whom he taught to walk.  What was really cool to learn is that she walks unaided...she doesn't even use a walker anymore.  Of course I wanted to know how he did it so he told me.  He suggested that we get a very light weight aluminum walker so Faith would have to learn to control it and walk more normally.  He said heavy walkers cause the user to over compensate and they have a harder time learning to walk properly.  He showed me online that Crocodile is a good one so we asked the good folks at U of M to help us get one.  They were great, and we got the walker about 2 weeks ago.  You can see how much Faith loves to walk.  Now it is a matter of hard work - we need to work with here over and over and over and over and over again so she can learn.

Overall Faith has been doing very well.  We really need to start on a real food blender diet to see if we can get her past some of the gas issues which is really her biggest problem currently.  We are still rejoicing that the bleeding has ended and not come back since February.

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.

Faith Enjoys Easter with the Family

Here Faith is opening her Easter basket with her sister Hope.  She likes the little Donald Duck with the blue ears.

Sibling photo at Nana's house after Easter service. Top left - Elijah then Gideon, Faith in the Center with Grace and Hope.

The whole family in our shades of blue...it was a lovely day.

Hanging out at home and enjoying the evening.

Faith has been feeling better (not perfect) ever since we started giving her olive oil in her diet.  She has also gained a lot of weight, and now weighs about 31-32 pounds at a little over 3 years old.  She probably gets about 1 tablespoon of oil per day which equals 240 calories in 15 ml or 1/2 an ounce.  Lots of calories are packed into this little bit of oil.  The bleeding from her bowels stopped when we started the oil and it was the only change we made.  A doctor said he didn't think it helped, but we are convinced otherwise.

The last week or so, we have been letting Faith sleep through the night without using her bipap for breathing assistance.  She has done well and seems to sleep better.  She needs the bipap when she is sick and then it helps her sleep better to get over sickness.  This is a happy time to turn off the bipap and get rid of the noise at night.

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.

Molly and Her Jaw Distraction

Below is a post with an update on Faith, but in this post, I am focusing on a little Trisomy 18 girl named Molly Miller who just had a jaw distraction.  Her surgery was done at Primary Children's Medical Center in Utah by Dr. Grimmer.  I have been very impressed with how well her surgery has gone.  She was in the hospital for a few days, but is already home.  She will finish distracting then they will remove the portion of the distractor which is turned so the bone can heal and Molly will have a longer jaw.  Her distractors are much different from the ones Faith had.  Molly's distractors are not as visible and are mostly inside her jaw.  This will give her less visible scars, and she even looks pretty comfortable.  I will try to follow her progress for you and parents who have Trisomy 18 children that want to learn about jaw distraction for their children.  When we first looked into jaw distraction for Faith, you could find absolutely nothing on the web about Trisomy 18 and jaw distraction.  Now when you do a search of T18 and jaw distraction, this blog appears first.  So I would like to follow the stories of children like Molly to show more parents how this procedure can change the lives of their children for the positive and keep information on jaw distraction easy for T18 parents to find.  Faith is a dramatically different little girl since her surgery, and I am betting the same for Molly.

Here is Molly with her dad before the surgery.

This is Molly after surgery and still intubated.

Here is a side view of the internal distractor.  The internal allow for less scars, but the external distractors like Faith had allow for better ability to manipulate the jaw in case of problem...blessing Faith had the external one's so it could be manipulated.

This is a bit blurry, but you can see the incision below her ear near the back of her jaw.  This is where the distractor is turned each day to allow the device to move her jaw further out.

This is Molly starting to get happy again even with the jaw distraction.  It just doesn't get more adorable than this.  Molly has an ng tube in her nose to help her eat.  She stopped taking a bottle after the surgery, but I expect she will again use the bottle and have an easier time eating with her jaw the proper length.  You try eating with a short jaw...pretty tough.

Faith Out with Momma and Family

Faith, Momma, and all her siblings went to a church event with some friends.  I am home alone because I have been fighting bronchitis.  Faith has also been sick and may have an ear infection so she has some antibiotics to take.  We get tired of giving her the antibiotics because it kills the good bacteria in her digestive system, exactly what we don't want to do.  Jesi did pick up some acidophilous to help us get her bacteria built back up.  Even sick, Faith hasn't had any bleeding issues since we started the olive oil in her diet.  She had a bit of a rough night last night until she threw up all the food we gave her then suddenly she was happy and talking so we decided to back off of the food.  That is one of the biggest problems with having a child who can't tell you exactly how she is feeling...sometimes it takes us a bit to figure out that she just doesn't want any food.  Normally, you and I just don't eat if we don't feel well enough and our other children can tell us that their stomachs are upset.

Faith Sleeping Away Today

Faith is sleeping in this morning.

This is how cute she is though when sleeping well.

Faith has really been feeling better recently.  Last night she started coughing again so she is probably fighting a little something.  Hopefully she will sleep it off.  Her bleeding issue has not come back yet so we continue to pray that her intestines continue to work more smoothly.  I need to capture her on video when she is hopped up on energy so you can see how funny she is.  For those who haven't seen a Bipap, I added the top picture so you can how Faith sleeps at night.

One of the other Trisomy 18 kids, Molly who we have met through the web, just had jaw distraction surgery and appears to be doing very well.  I am very interested to watch her progression because I think it can make such a difference in these children.

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.

Heading to U of M Mott Children's Hospital

I arrived home in time to change and have Faith starting bleeding into her diaper.  This is a significant  amount of blood so Jesi has packed and is on the road to U of M.  We called ahead so they are ready to do a red blood cell tag to see if the can watch her to determine where the bleeding is.  We just hope they can get the right doctors into see her or it may be for nothing, except that she will probably need a transfusion if this continues.

Please pray for Faith.  Also I will be sharing some upcoming media coverage...our story continues to grow with some help from our pushing.

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. :)

Cranial Facial...what?

Here is Faith intubated with RSV and the H Flu.

Here is Faith today...ah, that's what we like to see.

Nice to see her sitting up instead of laying in bed...of course she no longer has on these cute little pajamas as she just threw up on them.

Jesi just took Faith to U of M today to see a cranial facial doctor about her high palate.  When she gets a little older (age 6-8: love when doctors talk like this and plan for her to be around), we may look at putting a spacer in to lower her palate, but that is in the distance.  The doc would like Faith to work with their therapy to help her learn to swallow.  We will give it a try to see if they have anything that will help her.  Even with the jaw problem, he thought her bite turned out pretty good.  I will claim that one...as I did the last turning to align her jaw which was quite tricky.  I might as well take the credit. :)  He also said that her apnea is minimal.  The spacer idea is to somehow help with the apnea.  I would think it is better to help with swallowing, but I'm no doc.  It helps people with small nasal passages and mouth breathers like Faith to breathe more easily through the nose.

It was nice to come home to see Faith smiling, dancing, and enjoying herself.

Jaw Distraction...Before then After

BEFORE...Faith before March 7, 2011

AFTER...Faith on December 2, 2011

AFTER...Faith on December 23, 2011...3rd birthday

I happened upon some photos from earlier in the year when I took some pictures of Faith before her jaw distraction.  My after shots are not directly from the side, but these 2 photos months after give you a great view of the impact the jaw distraction surgery has had on Faith.  I made them larger so you can more easily see the difference.  For those of you with T-18 babies, look at the jaw of your children.  If they appear anything like Faith's short jaw, please get to a good ENT and get it checked.  If you are anywhere near Michigan and U of M, Doctor Green was our ENT.  Faith has been so much better off since we did this.  It is amazing how she went from looking like a baby to a little girl.  We are happy to discuss this with anyone interested...we will tell you the good and bad, but know that we would do this all over again.  We can also help you know some things to watch during your procedure to avoid some of our struggles.  This procedure can totally change how your child can breathe and end or drastically reduce apnea.

While Faith Recovers...Sickness came back from FL, but pictures too

This picture may look a bit funny, but that's because it was.  Faith really enjoyed the characters, but especially Minnie Mouse.  In this photo, you can see how happy she is, and she wouldn't stop talking to Minnie...if you listen maybe you can hear her unceasing babbling.

You can see how happy she is with Minnie...it was so much fun to watch her reaction.

We think she is doing an impersonation of Goofy...love those faces.

Ahh...gotta get a photo with Mickey Mouse.

Faith, you're not suppose to lick Donald Duck's bill.

Oh those stars are so pretty...look at the camera.

As long as she had her sunglasses, the warm sun was great.

Sporting a cool look in Florida.

Woody and Buzz...boy are they big...look at the size of that hat.

Chilling with Hope's Minnie.

Ok, the guy who took this picture was way too nice.  He took a family photo then had our other children move out of the frame so he could take pictures of Faith with just Mom and Dad.  It made Jesi cry and she hugged him because it was so thoughtful.

Faith really enjoyed all the lights in the Christmas display...she is in awe.

She is happy to spend time with the princesses dressed in her own princess dress.

She enjoyed meeting Belle, but this was really Hope's wish come true.

We got these photos free from Disney as part of our trip into the Disney parks.  We took lots of family photos which was nice because I could be in the photos as well instead of always taking them.  As the post title says, we brought back a virus from Florida which caused Faith to get RSV and H Flu, but we are now hanging out at home instead of the hospital so I decided to share some of the Disney provided photos.  It was so warm...and now, well its not so warm...kids have been playing in the snow.