GI Success?

It's been a while since I've updated on Finn's GI issues, so I thought I'd do that quickly.  We've been on the bethanechol now for almost 3 months.  I'll admit that I have been less than strict with this medication.  It's a refrigerated medication that needs to be given at even intervals throughout the day with meals.  Ummmm....yeah.  Dinner, that's easy.  Breakfast, also easy.  It's that mid-day dose that normally doesn't happen.  He doesn't eat lunch half-way between breakfast and dinner, and the half-way point doesn't always put me at home near a refrigerator.  It's a complicated logistic that I haven't been able to solve.  That being said, I did hear his test results last week and have renewed my commitment to this medication.  I found out last week that at the one-hour mark Finn had digested only 32% of his Ensure (it should be 50%), and at the two-hour mark he had only digested 55% (it should be 75%).  So, yep, he has slow motility and needs this medication.

At our CF clinic appointment at the end of September we discussed the issues with Dr. Z and she thought we needed to try a daily dose of Miralax.  CFers do not absorb as much as a "normal" person and therefore should be dirtying diapers more frequently.  Finn normally produced one diaper a day at that point.  So, we added Miralax with the goal of 2 to 4 diapers a day, which is apparently the common amount of a CFer Finn's age.

Since starting Miralax we have had no unexplained vomiting episodes!  It has actually been almost 3 months since we have had one.  I think we may have found the answer!  Yippee!!  I'm keeping my fingers crossed and I can't wait to go back to the GI with the good news.

Disney World--Days 5, 6 and 7

Day 5--Wednesday October 31st we headed to the Animal Kingdom.  I will admit that I didn't expect much out of this park.  And out of all of the Disney parks, this one closes the earliest.  We came to find out that they close early because they bring in to count, feed, and take care of every single animal every single night.  It's a several hour process and so they have to close early to make sure the keepers can get off at a relatively decent time.  Anyway, we got there around 11am again and had until the park closed at 5pm.  I honestly thought we'd be done before that, but I was very pleasantly surprised with how much we enjoyed this park.  We started with a bird show, Flights of Wonder, that was just awesome.  It was fun for all of us!  And then we took a stroll through Maharahjah Jungle Trek where we saw bats and tigers and more.  From there we slid into a showing of "It's Tough to Be a Bug" (a 4D movie again) before heading to lunch.  (Warning:  The movie is a tad scary and even Kai didn't like this one!)  We had a sit-down meal reserved at the restaurant Yak and Yeti for lunch and out of all of our reservations this was the one that I was most worried about.  And this was the one that Reid was most looking forward to.  I needn't have worried, as the food was quite good and it ended up being Reid's favorite restaurant of the trip.  I'll admit that even tougher for me than meat during pregnancy is Chinese meat, and so while I liked the food I wasn't in love with it.  Maybe next time, though.  It's definitely on our recommended list!

After lunch we headed over to Kilamanjaro Safaris and enjoyed our bumpy bus ride.  Admittedly, we had the crabbiest tour guide ever (and I even thought I heard him utter a bad word!) but the views were great.  If we ever repeat this, I hope we have a happier driver as I'm sure it would just make the experience that much better.  From there we took the Wildlife Express train out to Habitat Habit! and Conservation Station.  There was so much to do there we could have easily spent hours!  Kai loves challenges and there were lots of activities for the kids, from finding bugs to counting the number of different kinds of bats.  He took each task seriously and was sad that he couldn't do them all.  At Conservation Station we once again had great luck to run into Rafiki (from Lion King) and see him without a line.  Kai had no idea who he was, but at this point that didn't matter at all!  While Kai was doing some of the activities, Finn joined the little kids table to paint a pumpkin and earn some Halloween treats.  They were also handing out small buckets and we managed to snag the last two.  The ladies running the table told me that there would be trick-or-treating all over the Magic Kingdom that night, including at all of the resorts, so we really needed some buckets.  (We, however, ended up passing on the trick-or-treating experience later in the evening.)

From there we took the train back to "Africa" where we encountered the afternoon parade and got locked in until it was over.  It was a fun parade, even though we were running out of time and wanted to hit DinoLand before closing time.  So as soon as we could we made a break for it and had just a bit of time at DinoLand.  What a fun atmosphere!  The boys loved the Triceratops Spin and then Reid took Kai over to check out the dig site for a few minutes.  After that we took a quick walk around, and then headed for the exit.  We caught a bus back to our resort and then transferred to a Downtown Disney bus where we wanted to go eat dinner.  This was the first and only day that I remember my feet actually hurting.  We were tired and hungry so we took in Downtown Disney quickly and then decided to do some souvenir shopping at World of Disney.  Finn picked out an electronic El Materdor (Mater from Lightning McQueen) and a Lightning McQueen light spinner.  Kai picked out a small plush Perry (from Phineas and Ferb) as well as a matching winter hat.  Finally it was time for dinner at Earl of Sandwhich and then back on the bus to our room.  Only one day left and we wanted to make sure we maximized it!

Finn next to a very large bat

A tiger on our jungle trek

Hippos and pelicans on our safari ride

A whole lot of alligators!

Giraffes--people on the ride were so excited to get so close, so I told them they needed to come to our zoo where you can actually pet them  :)

Elephants

An ostrich walked right in front of our bus so we had to stop and wait for it to cross

Zebras

Rafiki

the Lego store in Downtown Disney--note that even Finn is getting in on the open mouth action now!

Day 6--Thursday November 1st turned into my favorite day of the entire trip.  We headed back to the Magic Kingdom for one last day and this time we pulled the kids out of bed early as we had a morning character breakfast scheduled.  We had not been having good luck with the buses at all and so we knew we needed to leave no less than an hour before our breakfast time.  Once again we missed the bus we needed by milliseconds and were left to wait.  But luck was on our side that day as just two minutes later another bus came, and since everyone had gotten on the first bus, this second bus was empty.  It was just the four of us and the bus driver for the entire 15 minute ride to the Magic Kingdom.  Reid sat up front to talk with the chatty driver while I manned the boys who had taken to wanting to always ride in the back.  We ended up at the Magic Kingdom at 9am and breakfast wasn't until 9:40am.  So, we went straight back to Fantasyland and started at Peter Pan.  Since the line was short we decided to flash our wheelchair sticker (I never felt good about using it when there were a lot of people waiting, so we would use the Fast Passes instead and then come back during Fast Pass time and use it then.) and we ended up walking right onto the ride.  From there we went over to Winnie the Pooh and had the same experience.  With time still remaining, we headed to the Tomorrowland Speedway where we took a turn around the track before running to grab a Space Mountain Fast Pass for Reid and then Buzz Lightyear Fast Passes for Reid and Kai.  We arrived at the Crystal Palace for breakfast at 9:45am.  Amazing!

This was by far my favorite of the sit-down meals.  The atmosphere was very nice and really, who doesn't like a breakfast buffet?!  Finn was still completely petrified of the characters and cried and begged to leave nearly the entire time.  After each character visit he would ask if we were done yet.  After Tigger he thought for sure we were all done and so he had no problem waving good-bye.  The problem is that we weren't done.  We had finished eating, though, so we decided that while Reid and Kai waited for Winnie the Pooh, Finn and I would head over to Splash Mountain and Big Thunder Mountain to grab Fast Passes for Reid and Kai.  We did that and then headed back to meet them outside of the Buzz Lightyear ride where they had just finished.  Reid then took his ride on Space Mountain and we decided to split ways for a while as the big boys were off to ride the big rides.  While Reid and Kai rode Splash Mountain and Pirates of the Caribbean (Big Thunder Mountain broke down), Finn and I headed to Fantasyland.  We rode Dumbo, the carousel twice, It's a Small World, Peter Pan, and then Winnie the Pooh before meeting back up with Reid and Kai.  We headed back to Dumbo together where Reid and Kai used some Fast Passes we had and Finn and I went through the "10 minute" line.  Would you believe we all ended up on the same ride?!  So fun!  From there we grabbed some smoothies for "lunch" in Tomorrowland and then headed to the entrance to catch a ride back to the hotel for naps.  It was about 1:30pm.

This was the first day that Finn got a nap on our entire trip and he needed it!  We rested in the hotel for about 3 hours before heading back to the Magic Kingdom for the evening.  At the entrance we caught the train over to Adventureland and got off to check on Big Thunder Mountain.  Unfortunately the ride was still down and wasn't going to be opening for the rest of the day.  So we decided to grab some dinner and then head over to Fantasyland again.  We realized on our break that there was a roller coaster that Finn was tall enough for (that Kai did NOT want to ride) and Finn was so excited to be big enough.  So, Reid and Finn went through the line at the Barnstormer and Finn proved Reid wrong when he got on and enjoyed the ride!  In the meantime, Kai and I headed over to the big top circus to collect two last signatures--Daisy and Minnie Mouse.

Then we all met up and found ourselves spots for the Electrical Parade.  Reid was enticed by the long light-up swords and bought 3!  The boys were in heaven and the parade was simply magical.  From there we moved to the main square to await the evening fireworks.  It was fantastic and a great way to end a fun vacation.  The mood was truly magical and both boys were in awe!  The park remained open for another 45 minutes or so after the fireworks, but who would want to ruin the mood after that (and we had done everything we wanted, anyway)?!  So we headed back to the room for the night and got to bed.

Day 7--Friday November 2 was time to head home!  We got ready early, called the bell hop to help us to the bus station, checked into our flight--including baggage--right at the hotel (awesome service!) and then went to spend the remaining of our dining plan.  We loaded up on snacks at the gift shop and then got some quick-service breakfasts.  It was nice.  We were even early to our bus and ended up taking the earlier bus to the airport.  After lunch at the airport, we were off.  Our flight was uneventful and would you believe that Finn even leaned over mid-Ipad game and fell asleep on my lap?!  Poor thing had a long and exhausting week.

It was a fun trip.  Kai says it was his favorite vacation ever!  Finn asks once every couple of days to ride teacups or Peter Pan or a carousel!  The boys had a great time!  It wasn't always easy, but I do think it was worth it.  Yay for our family vacation to Disney World!

Our early morning at the park.  Finn is tired and had just heard that we had a character breakfast, so he began his pouting early.

Eeyore

Piglet

Tigger

So happy to be done with the characters that he was willing to wave goodbye!

Winnie the Pooh

Reid and Kai on the Buzz Lightyear ride

A parade

Reid and Kai on Splash Mountain

Daisy Duck

Minnie Mouse

The Electrical Parade was truly magical

Waving as everyone passed

Pete's Dragon

Because we were there at Halloween time these pumpkins were on every street lamp

A very fitting grand finale to our week at Disney World

Disney World--Days 3 and 4

Day 3--Monday October 29th we headed to Epcot.  Once again the boys slept in until 8:30am or so and we made it to the park right about 11am.  This would be a trend that continued nearly the entire week of our trip.  We got into the habit of going to bed with the boys and not getting up until they did and it made a big difference (at least for me).  I never ended up feeling utterly exhausted.  Although I readily admit that I cannot sleep for 10 or 11 hours, I can lay down and rest and plan our day out in my head and just that resting helped immensely.  So, anyway, the adults weren't all that tired.  The boys were still quite worn out, especially Finn was not napping.

Once we arrived at the park we returned to Guest Services and I explained Finn's situation to them again.  This time we got an awesome deal!  A sweet old man gave us the card that we had before, but with an added benefit.  He gave us a tag that indicated that we could use our stroller as a wheelchair.  I can't even explain how timely this was as that day Finn started showing signs of getting sick (including running a low fever) and was really worn out.  Being able to wheel him right up to a ride was such a blessing!

This day was one of our hardest and must explain why we have virtually no pictures.  We did do a lot and managed to get on a lot of rides.  Reid rode Mission Space by himself (about which he told me that they actually have barf bags on the ride!) and then we all headed back to world showcase.  We spent a half an hour or so playing the Phineas and Ferb game and rode a couple boat rides (Norway and Mexico).  This is where I learned just how much I had damaged Finn with the Pirate ride.  When we tried to climb aboard these boats he freaked out so much that he made himself physically sick--all over his and Kai's only jackets for the trip.  So, now the have new souvenir jackets from Disney!  Back in FutureWorld we found ourselves some lunch and a slower boat ride that Finn actually could handle (Living With the Land).  At one point Finn fell asleep for about 2 minutes in the stroller but in unfortunately didn't last--double drats!  We took in the Journey Into Imagination, which Kai enjoyed and Finn was lukewarm on, Captain EO (Finn did NOT like it!), and the Seas with Nemo and Friends and Turtle Talk with Crush.  Turtle Talk was a highlight for us that day.  Kai had worked up enough courage to sit with the other kids on the floor for the show and when Crush opened it up for questions, Kai was the first one he called on.  Kai asked him about his swimming ability and he ended up showing off and crashing right into the screen.  It definitely made Kai's day.  Finally we took rides on Soarin', first Reid and Kai and then we used the rider swap for my ride with Kai.  Unfortunately even with Fast Passes that took over an hour and so we were running through the park to hit Spaceship Earth before dinner.  Kai says his favorite part of Epcot is Spaceship Earth, but I'm guessing that has something to do with his current space interest.

Finally we had dinner at the Garden Grill.  It was a fun atmosphere that included four characters with our dinner.  Unfortunately Finn was not thrilled, but Kai loved it.  We managed to finish our dinner right before the evening fireworks started, so we jetted out of the park to catch a bus before it got too crazy.  We were all happy to be back in our room and our beds.

As we were walking by Reid saw Donald come out.  There wasn't even a line, so we ended up being about third again.  So fun!

Does Finn look happy??

This is how Finn wanted to spend his day.  He wasn't feeling well at all, unfortunately.  See that red tag on our stroller?  Awesome is all I can say about that!

At the Nemo pavillion

Dale during dinner

Goofing around with Mickey

Chip

Pluto

Day 4--Tuesday October 30th we headed to Hollywood Studios.  This was one of our slower days as there really wasn't much for our boys' age ranges at this park.  We got to the park about 11 and went straight for the Toy Story Fast Passes, which we couldn't use until about 5pm.  So, we took in the Disney Junior show and visited the Magic of Disney Animation.  I actually really enjoyed the 10 minute film they had there.  It was neat to walk down the streets and see the movie sets all around you.  What a great environment!  Kai was too scared to ride Star Tours so we decided to take in the Indiana Jones Stunt Spectacular.  Kai really enjoyed it, but Finn didn't want to sit through the show and was unnerved by the fire and explosions.  From there we headed to a character lunch at Hollywood and Vine and followed that up with the Disney Pixar Parade.  From there we made Finn suffer through the Muppets 3D Movie and then after that we headed back to our favorite show of the day, the Lights, Motors, Action! Stunt Show.  Wow is all I have to say about that one!  All of my boys loved it, and heck, so did I.  It made the day worth it in my book!  We finished the day with our ride on Toy Story Mania!  Finn LOVED it--can you believe that?!  He was so upset when the ride ended that I would have done it again with him if the line weren't over an hour long.  Seriously crazy.  So, instead, we ended up walking over with Reid to the Rockin' Rollercoaster.  I bought the boys ice cream while we waited for Reid.  For you rollercoaster riders, this ride got BIG thumbs up from Reid.  In fact he said something about it being the first rollercoaster he had had fun on in years.  After that, we were done with our day.  We contemplated our options and decided to stay at the park for dinner at Pizza Planet before heading back to the resort.  Kai was excited to eat at Pizza Planet and we learned a hard lesson that just because you can charge everything to your room card doesn't mean you shouldn't have your wallet with you!  :)

We found this Green Army Man hiding behind a pillar. 

At the Disney Junior show.  Be prepared--they make the adults sit on the floor, too!

We were too close to the stage for the show.  :(

So, we haven't seen the movie but we did see Wreck-It Ralph there!

June (from the Little Einsteins) at Lunch

Jake

Oso at Lunch

Handy Manny

Lightning McQueen and Mater--Finn didn't even want to touch them.  Bummer!
The don't even give autographs either!

This was Finn's happiest spot of the day.  I let him throw a leaf or two into the Muppets' fountain and he was thrilled!

Dinner at Pizza Planet

Look--a SMILE!