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.

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.

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.

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. :)

Our Fun Day at Selfridge Air Show

Faith is excited to begin the day and ready for all of the action to come.

Beginning as the day should, here the Air Force Areal Team starts the day.

Here is one of the fabulous Air Force Areal Team members with the family...Faith can't believe it.

Will he make it from the plane onto the helicopter....you will have to wait and see...

Amazed and Stunned...Faith is speechless at the daring antics of this dare devil.

Shew...safe and sound...our dare devil grabbed the helicopter and was set down safely.

How do they fly straight with all of the blood rushing to their heads in the FA-18 Super Hornet?

And it's even more amazing that they can aim their bombs so accurately at the same time.

Faith is completely amazed and in awe with the astounding ability of the FA-18 pilots.

Here Faith is so worn out from the action, but takes a minute to pose with the incredible FA-18 Super Hornet pilots.

Even the sky had a nice day and couldn't help but smile from all of the fun.

Our friends at Rainbow Connection made this day possible for us with free tickets to a VIP tent at the Selfridge Air Show in Mt. Clemens, MI.  The whole family had a blast, and it was thrilling to watch all of the action and experience the power of our military.  Faith continues to get stronger, but we still keep working on her feeding issues.  Check out the short video below of a high speed fly by of the FA-18 Super Hornet.  He was moving at near 1 mach and very close to the sound barrier.  Look closely and you can see the air around the plane has a white mist look because of amazing speed.

Check out my new hand-me-down.

Thinking about rolling around in this thing.

My cousin John who gave me this new gadget.

Alright Dad, enough with the pictures.

Faith has been doing very well since feeling sick for about a week or more.  She had 4 days without throwing up at all which is a new record or at least has been a very long time since it has happened.  She has been so excited all night and it appears that the stander may be helping her build her core muscles with the way she is moving around and standing in it.  With the wheels, she also has figured out how to push backwards, but she hasn't quite gotten the walking forward thing yet.  It is funny to watch her push all the way through the house.  Now she can disappear on us.  Check out the video below to see how well she can stand.

Walking with Faith