Friday, March 23, 2012

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.

Saturday, March 17, 2012

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.

Thursday, March 8, 2012

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.

Sunday, March 4, 2012

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.

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.

Thursday, March 1, 2012

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.