Heating Things Up for Memorial Day...

Does it get any cooler than this?  Thanks for the sunglasses Dianne.

Sorry to drool, but you try keeping your mouth closed with these things on your face.

Hanging with my friends at the Henry Ford village and museum.

Ok...so we have gone from a cold spring to hot summer...where did the 70s go?  We spent Memorial Day at the Henry Ford Village and Museum in Dearborn, MI with a temperature of 93 or so.  As you can see from the pictures, Faith is doing well, but still has the distracters on her jaw.  She did great today and enjoyed it along with the whole family.  It is so funny to watch people's eyes as we go around places because they look and look and look especially the children.  I could make it easy for people and tell them what it is, but it is too much fun to watch their reactions to her distracters so I usually stand silently and watch them as they watch her.

Radio Show today

I know...I know...it has been too long for an update.  We have been busy working around the house.  Jesi and I have accomplished more in the last 3 weekends around the house than we did all of last year.  Because of this, I have neglected any posting, but we have also been in somewhat of a holding pattern.  Faith still has the distracters in while her bone heals.  We have an ENT appointment on March 7th and hopefully we will get the distracters removed quickly thereafter.  Faith is doing well overall; although, she still is waking up at 3am every night and whining.  She seems to be in a little pain as we are able to give her Tylenol and get her back to sleep.  It seems as though the distracters are hurting a bit which would make sense because she does have redness at a couple of the pin sights.  We look forward to their removal and believe she will be much much more comfortable.  She is smiling a whole lot more than ever.

Jesi and I were interviewed during Sleep Talk on News Talk 1400 today.  For those who don't know, this is the station I work at.  Sleep Talk is a program hosted by the Detroit Dental Sleep Network.  Their program is about sleep apnea and they wanted us to tell about our story to help others who might be in a much different situation, but are dealing with the sleep apnea issue.  If you have any interest, I have attached a link to the podcast of the program on our website.  You can also visit www.newstalk1400.us and click on the local podcast page then look for Sleep Talk.

http://podcast.den.liquidcompass.net/mgt/podcast/podcast.php?encoder_id=95&event_id=733

We will probably end up on 2 other shows on Faith Talk 1500 as I have been asked by these hosts to interview when we are ready.  If you listen, please let me know what you think.  We want to help others and if we need to work on our approach or anything else, I would love the feedback.

Working on the stomach

Faith is continuing with the jaw distracters until early June so her jaw can solidify.  In the meantime, we are beginning to work toward a fix for Faith's feeding issues.  She has had a big problem with gas and spitting up on a regular basis.  We have recently changed her food to a real food mix made for the g-tube feeds.  That has certainly helped, but a recent appointment with the GI doc offered a different approach.  He believes Faith's gas problem is really an air problem.  He thinks she is swallowing large amounts of air.  He suggested a different feeding pattern and wanted us to start by venting her as she lays down then feed her 5.5 ounces in about 10 minutes 5 times each day.  So far this has produced very good results.  She has not spit up much since we started doing this.  She still has some bad gas issues, but not nearly as many.  When she has spit up, we think many times it has been caused by mucus getting caught in her throat or just having too much mucus in her stomach.  Yes...she still has quite a bit of mucus which we think might be in part to all the jaw changes.  Jesi has her prone on some pillows on the floor.  She looks quite cute in her pj's and keeps kicking her feet up behind her.  Hopefully we can get some of the junk out of her before bed so she sleeps through the night.  We have had a couple of nights in the past week when she slept through the night, and we are hoping for many more. 

It is so amazing to see how much her more energetic and interactive Faith is.  We found another Trisomy 18 child who has had a jaw distraction surgery.  His name is Kayden and he had the surgery back in 2001.  He is turning 10 next month and is doing very well.  This makes me think even more that this surgery can make a dramatic difference because what I have read about Kayden, he was probably in a worse position than Faith was as an infant.  I want to learn as much as I can about this and hopefully we can help others.  Her is a link to a video of Kayden... http://www.youtube.com/watch?v=1x-vdUyULJM 

It is Here...

Well, Jesi took Faith in to see Doctor Green today for a check up on her jaw distraction.  He was happy with how she looked and said we were FINALLY done with distracting.  The distracters will stay on for the next 4 weeks so her jaw bone can solidify.  We spent the last few days watching closely as we distracted because we had to stop at the right point where her two upper front teeth lined up with her two lower front teeth.  Jesi left this to me and it wasn't all that easy, but I can proudly report Dr. Green didn't even need to make an adjustment to my work.  I'm thinking of retraining and switching professions. :)

We have talked to several different doctors about the bowed jaw bone, and so far all of them have said to wait and watch because children's bones seem to have a way of correcting these things on their own.  For now, we will wait and watch.  Once we got her chin back to the middle of her face the bowing doesn't look as bad as it previously did.  It isn't over yet, but now we are just waiting to get the metal whiskers off.

Finally...Distracting Nears Its End

Easter Day photo with the family out at the home of Jesi's mom.

Smiles simply don't get much better than this.

This picture is a little older so you can still see the jaw pushing to the left.

I think this is the best picture to see the flat right side and bowed left side.

After being chastised by Kristie for not posting in a while, I have decided to take some time and post some pictures along with an update.  I will do my best to keep this from being a boring post, like I don't have anything else to do. :) 

Faith is doing well, but we do have some problems that aren't going away soon except by God's grace.  Faith's left side jaw bone is bowed which you should be able to see in the pictures above.  If you look at the right side, you can see that it is flat and the left side is rounded.  We are finally getting her chin back to the middle of her face...hallelujah.  Her chin and lower teeth now extend beyond the upper teeth.  This is done purposefully because short jaws tend not to keep up with the growth rate so the idea is to let her face grow into her jaw.  We will see how things progress with the bowed jaw bone, but not sure we can do much about this for a while. 

With all the jaw struggles, this is still a huge blessing as Faith can breathe on her own without anything to assist her while sleeping.  I will get some video up to show how active she is.  Many people have been amazed at her increased energy level as are we.  Now if we can get this feeding issue worked out and those crazy brackets off her face, we will be entering a different world.  We have an appointment with the ENT tomorrow to see exactly where we are with the jaw.  We know she has at least another 3 weeks or so with the distracters so the jaw can heal.

Busy Weekend...

Faith was moving all over the place this weekend.  As I said she had gotten sick again, but has been feeling better; although, I continue to be amazed how much junk she produces.  Friday night we took her to church for Team Impact (formerly the Power Team) which she and the kids loved.  All the excitement was fun for her, but then tonight we attended the Awana awards night for our kids.  I think Faith enjoyed this night more probably because she is feeling better, but when the audience clapped she got excited and tried to join in on the fun.

We have a doctor's appointment on Tuesday to check the distraction.  Her jaw is still off, but we have a great hope that as the left side continues to grow it will move back into the correct spot.  Thanks for your continued prayers and we will let you know how things go.