Day 4 (Yesterday)....Universal Studios Islands of AdventureDr.

Faith is ready for her day at Islands of Adventure.

Dr. Doom joined us for a photo...Faith likes characters, and Dr. Doom talked to faith with made her enjoy him as well.

Captain America has been one of our favorite movies this year.

Beautiful place...we have been enjoying the settings of these theme parks.

Faith's wish trip from Rainbow Connection (lovely people)...the day started out a little rough at Universal Studios Islands of Adventures as it was filled to capacity when we arrived.  The filled part wasn't so much of a problem for us as they give us VIP passes, but our tickets were messed up so we had to go to guest services to get it corrected.  After an hour...yes, this lady gave us quite a hard time, but I will say she was the only one in the park like this.  Everyone else was incredibly friendly...hmmmm...even Dr. Doom.  The VIP pass was great because they set an attendance record, but we were able to get to the front of any line except for the bathrooms.  They actually escorted us to the front and put us right on the rides...it didn't feel like a record setting day because of this.

Today we are off to Disney's Hollywood Studios.

Faith is having a Great Time...Day 3

Faith has been quite happy on this trip as you can see here with Gideon at the start of our Animal Kingdom visit.

Faith and the family get special attention wherever we go.

Faith and Hope got to be in the Lion King parade at the end of the show.

Hope got to smack hands with the character on stage...she thought that was so cool.

Faith was given special seats in the box for the Finding Nemo musical...she had a great view.

Animal Kingdom was quite fun for everyone...Faith did fall asleep on the safari ride.

We finished the day by park hopping to the Magic Kingdom.

It is amazing how great Disney is with Wish Kids.  We save lots of time by jumping to the front of all the lines...people don't mind once they know why.  We even get a special photo pass which allows us to take family photos with characters and throughout the park so we will have lots of great family photos with Mickey, Minny, Donald, and many more.  The time savings is amazing with the throngs of people...unbelievable the number of people here.  We would never come at this time of year normally, especially after seeing this.

Give Kids The World has been amazing as well.  We are enjoying their events and all the great food too!

Wish Trip...Day Two

We spent the morning with Florida State and Notre Dame football players at GKTW...they will be playing in the Champ Sports Bowl this Thursday.

Here players from both teams are hula hooping....hmmmmmmmmmmmm

After the fun with the football teams, we moved on to Sea World for an afternoon of fun.

Here the family got to feed the dolphins...this was quite fun and gave them a chance to touch the dolphins.

Faith has really been enjoying this trip...it has been wonderful to see her responding so well.

We took in the Shamu show...lots of splashing and mighty large mammals.

Here the dolphins were flying high and the family was loving it.

A little family photo before we headed out the gate.

So far this trip has worked out very well...we feel like we have already seen and done so much, but it has only been 2 days.  We have 7 more to go and more to do than we could ever get done.

Faith's Wish Trip....the first day

The Limo arrived at 7:30am to pick us up for the trip to Give Kids The World.

Faith enjoys her brand new car seat in the limo.

Our plane had just arrived and we were ready to go.

We had just arrived in the Orlando airport and were greeted with the sign Faith is holding in the picture

Here is our first night at Give Kids The World...it was a Halloween celebration...they celebrate different holidays throughout the week.

HAPPY BIRTHDAY...BIG NUMBER 3

The BIG Day began with a bubble bath...one of Faith's most enjoyed activities.

Now to opening presents, first with brother Gideon...wow, what is that?

Faith loves when her brothers play with her...Lightning McQueen and her bro

Faith prepares to open her next present with Big Sis Grace.

Already thinking ahead to the next present before this one is even open.

Surprise and amazement at the thoughtfulness of the gifts she received.

Falling asleep on the floor after a long fun birthday...ah this is nice.

Three years ago today Faith was born and we knew that we had an issue...just weren't sure what it was at that point.  Now 3 years later, we are all grateful to God that she is doing so well with her Trisomy 18.  Since November 2nd, Faith has dealt with surgery and sickness that lasted well over a month, but she is feeling much better and has picked up greatly on her energy level.  She is feeling better just in time for our trip to Give Kids The World.  This is a wish trip from Rainbow Connection, a local charity similar to Make A Wish.  We leave on Monday so Christmas will be a busy day of preparation.  We will try to give you a glimpse of our trip with some pictures and postings while in Florida.  What a present this will be...God bless us everyone!

TEARS WITH OUR FRIENDS

One of the families we have come to know best has endured a great loss while their beautiful daughter Lilly has enjoyed a great gain.  Lilly, another Trisomy 18 child about 1 1/2 years old, went to be with Jesus while she slept the other night.  Our family is crying today with them, but rejoicing in the tremendous grace of Jesus Christ.  We ask that you would pray for this family, but join with us in helping this family practically if you are able.  Medical bills with this can be devastating.  The Lilly Memorial Fund has been established to help with the many medical expenses Lilly incurred. Checks may be made payable to Christ Church and mailed to P.O. Box 1034, Cary, NC 27519.  This is a tremendous heartache as it is, but we can help keep it from being a financial burden on this family.  Please pray and ask the Lord what He would have you do.  You can learn more at http://pray4lilly.blogspot.com/.

Thank you Lord for extending your tremendous grace to Lilly's family and for receiving her into Your arms.

Sickness But Getting Better

Feeling Better...thanks for your prayers.

I am working on my drumming skills to join a new band.

I just don't get much cuter than this.

Ah...it's good to stand...I love this thing!

It has been a little rough the last month and a half with the last 2 weeks being more of a sickness with lots of mucus.  She is handling it well though because our 5 year old Hope has also been sick for about the last 3 weeks.  If we can get her by this mucus soon (which has kept us stuck at home as well), she seems to be much better in some ways since the surgery.  It appears her bowel movements are doing very well and no Miralax.  Maybe removing that growth will allow her intestines to continue operating better.  We still need to get totally over this sickness to know where she really is.  Regardless, it is nice to see her happy as can be today.  FYI...the great photos above were taken by Faith's sister Grace who is pushing 13 now.

Bleeding back...

Well, we were not sure if the surgery was going to fix the intestinal bleeding.  It appears there may be at least another cause for some bleeding.  It is not in the amount that she was experiencing previously so we may have resolved one issue.  She is also fighting a bug that Hope has had for at least a week.  We are having a hard time keeping anything down her so we moved to electrolyte water by way of a slow feed.  We are trying to keep her from dehydration.  If we didn't have the g-tube, Faith would probably be in the hospital, but we are able to handle this issue without their help.

Now it becomes an issue of trying to figure out what is causing this problem.  She has absurd amounts of gas being creating which is the cause of her inability to keep food down.  We need to get her over this sickness and get the food going again.  These bowel troubles have caused her to lose some weight so we really desire an answer for this issue. 

Out of the Hospital

We did make it out of the hospital, but it was by Monday (a week ago), not Sunday as I had hoped.  Faith is doing much better and does not appear to be having any pain during her bowel movements.  We still have the crazy gas problems which might be accentuated by fighting a little bug.  Faith's big sis Hope has been having some stomach pains and feeling a little bad, but not horrible.  Faith seems as though she may be fighting it as well.  She has definitely improved from yesterday to today so maybe she will get over this and the gas soon.  We are beginning to give her regular food to see if that makes a difference. 

Hospital Stay Continues...

Faith does has a way of drawing a crowd even if it is just her family.

She really love to grab faces and hair...big sister Hope plays along.

She likes to show off her IV, or just yank it out if she can.

Feeling great today...someone want to play ball?

Faith is still in the hospital, but we are expecting to get out tomorrow.  We will see if the surgery was successful in removing the bleeding problem, and we are also hopeful that it will remove some of the pain she has been experiencing during her feedings.  She just starting eating slowing today.  We have been waiting for her intestines to start working again as they stop when they are handled during surgery.  She was quite happy when we left her with Momma at the hospital.  It will be nice to get out.  We think that we were in the hospital during this same weekend last year.  It is amazing the difference between last year and this year.  She is recovering so fast now.  She had surgery on Friday morning, and she was off pain meds by Saturday...I would like to see some of you try that. :)

Ambulance Trip and Hospital

Just when we thought the hospital was a not so fond memory....we're back.  On Wednesday, Faith had another bleeding episode except this time the blood poured out of her intestines quickly and in a fairly significant way.  Jesi had walked to a therapy appointment and hence did not have the van.  She would have just driven to the hospital, but she wisely had them call an ambulance since walking would have taken way too long.  The blood came out in a large enough quantity that it poured out of her diaper and pooled on the floor.

We are now in the hospital and had a test yesterday for Meckel's.  Meckel's can randomly bleed in your small intestines.  The test was negative so the next option became surgery to physically look at the small intestines.  So we opted for the surgery which we had this morning at 9.  The surgeon found a growth on her small intestines and removed it.  Gross, but it was squirting blood so we think it was the culprit.  He was easily able to get it out and close her up without removing a section of intestine which is good.  He also removed her appendix while he was at it so I guess we won't have to worry about any infection there.  He did mention that he has never seen anything like it...surprise, our daughter has something that a doctor has never seen.  Faith is recovering nicely, and we hope to be out of here by Sunday.  We are also hopeful that this could have been the cause of some of her pain while being fed.  By God's grace, we will see a great improvement in her feeding.

On a positive note for Hope (our 5 year old), she had to witness the bloodloss episode, but got to ride in the front seat of the ambulance which she thought was so cool.

Colonoscopy update

Well, today was our big day for Faith's colonoscopy.  We watched as they gave her some happy juice to make her sleep.  It took less than 30 seconds for her to go under with this stuff.  She was already tired and almost fell asleep watching Baby Einstein videos which she seemed to enjoy.  Once under, we were told it would be at least 45 minutes and they would let us know if it was more than an hour as polyps would take about 5 minutes for each one to be removed.  When the doc yelled down the hall to us after maybe 30 minutes, we were quite surprised.  He expected to find polyps and possible many, but found none.  Instead he found a swollen lymph node that was being rubbed across during each bowel movement which would cause it to bleed.  The bleeding had subsided a few days ago so no real problem.  He did take a biopsy to have her tested for any allergies which seemed like a good idea - glad he thought of it.

This is all very good news and Faith seems to be recovering very quickly from the colonoscopy.  We are beginning to wonder if the sickness (possible pneumonia) she had recently is to blame for this and other issues.  As many of you know, we have started using the bipap for sleeping because her apnea seemed to reappear recently.  She had been sweating as she would go to sleep which is a sign of fighting for oxygen.  Well in the past few days, she has stopped sweating as she falls asleep.  This has made us wonder if she was sick longer than we knew and caused signs of apnea.  Not sure, but we are going to watch and see.  As she laid in the hospital today sleeping comfortably without her bipap or any other aid, her O2 levels were consistently at 97% and never dropped below 94%.  Before her jaw distraction, she would quickly drop into the 80s.  So as you can see, we are wondering if she really needs the bipap on a regular basis or just when she is sick.  Now you have experienced my attempt to practice medicine and reason through all of this craziness...thanks for all your prayers!!

Blood Tranfusion and a little fun on Mackinac Island

Faith enjoys the view at Mackinaw Island, MI from our hotel room.

Mackinac Island allows no motorized vehicles on the island.

The Smith girls enjoy the beautiful day and view as Faith hangs onto the railing.

Somehow Daddy always gets a smile out of Faith

If this doesn't make your feel patriotic, you're not a patriot.

Momma gets to enjoy the evening without Faith, and a beautiful view from the Grand Hotel's porch.

This is the Mackinac Bridge to Michigan's Upper Peninsula on our walk back to our hotel.

Faith is hanging with Hope in the hotel room...get off the phone and play with me.

Eli with his Mackinac Island hat as we leave with Mackinac Island in the background.

Blood transfusion...did it catch your attention?  Well, it had nothing to do with our little trip to Mackinac Island, but yes, Faith had a blood transfusion last week.  She has been bleeding in her bowel movements and lost enough that she needed the transfusion.  In fact, tomorrow we are taking her in for a colonoscopy.  Not quite 3 and getting her first colonoscopy...well, here we go.  She is doing well, and the blood transfusion was like giving her an upper.  Doc thinks she might have polyps so we will see.  This should be a fairly short outpatient procedure.  We will let you know how it goes.

If you have never been to Mackinac Island (pronounced Mackinaw), this is one of the more beautiful places on earth.  it is situated at the northern part of Michigan at the mouth of Lake Huron where the water flows from Lake Michigan and Lake Superior.  The waters of Lake Huron are beautifully blue and clear as you get near shore.  The island allows horses and bikes with motorized vehicle use limited mostly to emergency vehicles.  If you ever get the chance, this is one place worth visiting.

Video below...

Faith loves loud noises and we took this video of her laughing to our banging sounds.  The funniest part was after we took the video.  I was laying on the floor across from her watching the video on the camera.  She started laughing hard again because she could hear the banging sounds again through the camera's audio.

Hope you enjoy the video...remember this is a little girl who was not supposed to live, likely interact with us in this way.

Faith laughing

Summer of heat

Messy, but good.

Here is a picture of a hot and sticky little Faith.  We had given her a little ring sucker which she had seemed to enjoy.  Faith had another follow up sleep study.  It did show that she is dipping at times during her sleep...not sure why, but we may be using the bipap again to see how she does.  The last few nights she has slept all the way through the night, but she does wake us up during the typical night.  We are still having gas issues, but she definitely handles the gas better than she used to.  She does spit up still, but will go through plenty of days when she doesn't spit up.  We really need to start trying our own food mixtures, but time hasn't really been easy to come by this summer. 

We went to see Tobymac, Peter Furler, Mandisa, and Jamie Grace last night.  Faith enjoyed it, but then fell asleep during the loudest part of it with her ear plugs in her ears.  She is really handling things so much better which has allowed us to travel and do things we would normally do...even bike rides with her in the toddler seat.  We still keep the feeding tube and a cup with us at all times to keep her vented and well, catch it if we don't.

Air Show Fatality

On a very sad note from our air show experience, we learned that the gentleman in the picture below who is reaching for the helicopter tragically missed this maneuver during the air show on Sunday.  He fell 200 feet to his death.  You have probably already heard about it as it made national headlines.  In the pictures below, you can see our children were able to take a picture with him on Saturday.  We pray that his family is comforted by the Holy Spirit.

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.