Our amazing trip!

We had a truly magical week at Give Kids the World and the theme parks around it.  On Sunday we arrived at the village, had lunch, checked in, then Kevin & the kids unpacked while I went to orientation.  After I got back to the villa, we went to the pool.  Before taking Procardia for her Raynaud's, Emily couldn't go in a pool that had a temp lower than bath water.  I'm happy to say that we stayed at that pool for about 2 hours.  And I think I broke my "bee curse".  Yes, I know it sounds silly.  I have always been a target for bees. For whatever reason, for the past few months, everywhere I go I find dead bees.  Whether inside or outside, there have been dead bees everywhere.  Well, I found a bee struggling in the pool.  Despite always being a target, I grabbed a stick, pulled it out of the pool, and stuck it on a table in the sun to dry.  I'm happy to say that I haven't seen a dead bee since.  After we left the pool the kids went on the carousel.  They had several turns before we went to go make their dream pillows & start the process for Emily's star.

On day 2 we met Rapunzel!  I hadn't realized that it would take ONE HOUR to get from the parking lot to the inside of the Magic Kingdom.  Thankfully I brought the paper with the info on where to go (the First Aid station)  with us.  There was a phone number to call in case we ran into any problems.  I let them know our situation assuming they would tell us that the deal was off.  Rapunzel was waiting for us when we got there.  She was amazing!!!  She stayed in character the whole time.  She engaged all of my kids in conversation.  Gir showed off some of her drawings, but mostly she & Emily chatted away.  Em was sooo happy.  She was still glowing when we went on our first ride.  I'm still not sure what happened but somehow while getting off of the ride she hurt her elbow.  Back to First Aid we went.  After some time with an ice pack she was ready to go back out.  About an hour or so later we went on the Peter Pan ride.  While she was getting into the car they stopped the moving platform.  That made her lose her balance and she once again hurt the elbow.  Back we went to First Aid!  This time we got an Ace bandage to go with her ice pack.  She wasn't really sure if it was really from an injury or her arthritis.  I believe it's a combo.  Either way, she said today that it's finally starting to feel better.  The rest of the day was less eventful.  We stayed for the Electric Light Parade & the fireworks around Cinderella's castle.  It was a magical day! 

Day 3 brought us to Universal Studios Island's of Adventure.  It had been Gir's dream to visit the Harry Potter area.  After sleeping in to recover from the day before, we got her there ok.  The crowds were unbelievable.  People were everywhere!  To get back through a store I went outside & around.  I cannot deal with too many people, especially in shopping situations.  I'm fine with being closed in like with MRI, but not when I'm surrounded by people.  I had to get out of there.  One would think that in an area devoted to kids and adventure, there would be things for the younger set to do.  Nope.  There really wasn't much for my little guys to do there, so we split up.  I took the little peeps to Dr. Suess land & Toon Town while Kevin & Gir hung in Potter Land.  From that point on the kids pretty much enjoyed the rest of the day.  Emily told me the next day that when we were on one of the water rides, she felt like she couldn't breathe.  I wondered.  She had a weird look on her face.  She seemed more fragile the whole week. I also think that may have been the day that she hit her head on a ride.  That hurt her all week.  She really enjoyed the Spider Man ride here.  And Zach got to be "Special Conductor of the Day" on a ride in Suessville.  After we left we had to go in search of a battery charger for the camera.  My batteries died after about 7 pics in Universal.  We had attempted to charge it the night before but apparently the USB to DC converter for the iPhone isn't compatible like you'd think.  I also picked up a new battery but only just in case my battery didn't charge.

Day 4 was Sea World.  After the hustle & bustle of Harry Potter land we needed a day of down time.  We figured that Sea World would provide the perfect opportunity.  I guess the dolphins just don't hold as big a draw as Harry Potter.  The park was far from a ghost town, but it wasn't crowded either.  Perfect!  Kevin was really getting tired of crowds of people cutting him off while pushing the chair, running into him, running their kids into him, or jumping over the chair while moving.  (Seriously.)  Sea World was our first day that we felt able to relax.  It was a wonderful day just looking at the sea life, watching shows, and feeding the animals.  My favorite moments of the week were spent here, watching 2 of the kids feed the dolphins.  My son was off pouting in a corner because he wanted to go ride rides instead of feed the dolphins, but my girls had a blast.  There was such joy on their faces.  And who doesn't love dolphins?  I was really excited.  I love the stingrays, too.  Em's more scared of them, but Gir & I love them.  I am NOT a photographer, but I lucked into this shot: 

Isn't he cute???  We didn't get to go on the Manta like I really wanted to, but we did catch one dolphin show & the new Shamu show, "One Ocean".  We left feeling recharged and happy.

Day 5 we decided on Animal Kingdom.  As with Sea World, I really felt happy here.  It's amazing how many people rush around trying to see things but completely overlook the obvious.  AK is such an amazingly beautiful place, created out of love.  There were so many things that I was totally drawn to.  While I could happily work at Sea World, I could totally live at AK.  The girl always enjoy animals, so they loved it.  It was so cool just looking around, wondering what you would find next.  I took tons of pics here because I really fell so in love with it.  This was another magical day, but I did miss my dinosaurs.  I was heartbroken about that.  :(  I have always had a love for dinosaurs and the mysteries surrounding them.  I knew that my son would appreciate it, and Gir thinks they're cool.  I really wanted to take my kids to see the dinosaurs, and we totally missed it.  I think I moped the rest of the day.  I knew how stupid that sounds, but I couldn't get past it. 

That night was Christmas at the village.  We made it just in time.  They actually do pictures with Santa for the kids, a celebration with cotton candy and snow, and they give every child a toy.  We are so in awe of that village.  It's amazing!

Day 6 was our Hollywood Studios day.  We slept in again.  The kids had a hard time keeping up with me  :)  We are just not morning people.  We were told that the Star Wars parade started at 1 PM so we planned to get there in time for that.  Nope.  It started at noon.  Getting there at 1 we missed it.  But that was ok.  We caught up with several characters and got pics and autographs.  One of the many Disney employees that we met told us how to make the most out of our day.  It was unbelievable how many volunteer at the village.  They say that Disney encourages them to volunteer there.  I thought that was sooo cool!  Anyway, we did the Star Tours ride twice.  The kids loved that.  We did the Toy Story ride.  Emily really loved that!  She was so excited!  It was really cool to see her so happy.  I tried to get good pics, but of course it's always like a day late, dollar short.  Gir tried out for American Idol (Disney version).  While she was amazing, since she sang Evanescence she was told she wasn't "bubble gummy enough".  She expected that, she really just wanted the critique.  The judge was impressed with her voice so she was happy.  I auditioned, too.  I can't believe how nervous I was.  It's been many years since I was active in the entertainment industry.  I can't remember what play I was in last but I think my last talent show was 1992.  I think the last time I sang karaoke in front of a crowd was when Gir was about 5.  I didn't plan on singing so I didn't have anything picked out or rehearsed.  I did ok enough in spite of that.  She could tell that I had a good voice, but I was trembly and forgot my words since I didn't really plan on singing.  I would have psyched myself up had I known...  We watched the Muppet Show  <3, rode the Tower of Terror, and the Aerosmith's Rockin' Roller Coaster (my new favorite ride!!!)  My little boy went on it- his first loop coaster.  I think we got him hooked!  Emily... not so much.  She had nightmares about the Tower of Terror.  She didn't go on the roller coaster.  I think it may have killed her.  As we were leaving they were rounding people into the "Fantasm" show.  Even though we really needed to get back & pack, we went to the show anyway.  We all really enjoyed that.  It was pretty amazing!

On our last day we had choices.  To check out and hang at the village all day, go to our last day at Universal or just go home.  Everyone voted for going home.  I believe they were all homesick, but I also think to a degree they didn't want to leave so they wanted to just hurry up and do it.  Get it over with.  Not to mention Emily was stuffed up.  I was truly afraid that she was getting sick. 

She went to our pedi today.  She said there's a lot of viral stuff going around, but just in case she put her on Omnicef.  Omnicef is a strong antibiotic that they generally only use when everything else has failed.  Em has been sick more than well the past few months so she figured this may clear up any residual drainage or infection.  With the chance of pulminary hypertension always hanging over our heads, I worry.  Especially now since she has been sick more often than not lately.  The other thing that disturbs me now is that she's back to barely being able to eat anything now that she's on a lower dose of Prednisone.  (6mgs is still high, but it certainly beats the 42mgs she started out on).   Before I had always thought that she just needed Prilosec or Prevacid.  Well, she's on Prilosec.  She's been on Prilosec since October.  I have a TON of questions that I wanted to ask the docs tomorrow when we go for her IV meds, but I found out today that the docs aren't in at all tomorrow.  Since she wasn't seen last month, and most JM kids are seen every 4-6 weeks, I'm feeling a bit anxious about this.  I wanted an opinion on the GI issues, I wanted to have her PFT (Pulminary Function Test) repeated since she really didn't want to be bothered the last time.  It was her last day of her hospital stay and she really just wanted to leave.  I also wanted to see if we could increase her Remicade and decrease her steroids.    I'm not very patient.  We shall see what happens tomorrow.  I'm assuming that the ARNP's won't be there either, but one can hope, right?  I'll post tomorrow or the next day how it goes. 

We're back!

The week was crazy, wonderful, exhausting, exhilarating, beautiful.  We got back home on Saturday, earlier than expected, but we were all so tired.  Though it had its rough spots, for the best part the week really was a wish come true for Emily.

I've been too preoccupied to post.  I'm still trying to sort things out in my head.  So much ran through it this week!  So much happened.  So many memories made.  Give Kids the World Village was a wonderful, beautiful and amazing place that I'm having trouble putting into words.  Before I formulate all of that, let me say tonight that I am very grateful to Boston Market, Perkins restaurants, Breyers ice cream, Hasbro toys, Walt Disney World, Universal Studios, Sea World, and the many, many volunteers that help to make up this amazing community.

The story of Give Kids the World can be found here.  I was first told this story while in the pool with other families.  We were enjoying watching all of the different children, some in PVC crafted wheelchairs especially for the water.  It was amazing how many different families were there, yet there was a feeling of kinship and understanding here.  The volunteers come from all different walks of life.  Some are high school students doing their community service projects.  Some are college kids earning credit.  Some are retired folks, occasionally coming from different states to spend their vacations helping these families.  And many are employees of the theme parks.  We had figured that the theme parks may feel we were a burden- getting free tickets should be enough, right?  No, they totally understand that they are giving some children the hope to beat their diseases.  Some children will cherish these memories as they fight long, life-long battles.  And others don't have time for any other wishes.  They know the tolls that having sick children can take on a family- mentally, physically, financially.  These theme park employees would sometimes come up to us and ask us how we were doing, how we were enjoying our stay, and all mentioned how they loved the time that they volunteered there.  Many are still active volunteers.  Others can't fit it in right now but look back fondly.  I cannot begin to express to you how amazing a community this place is.  And they think of everything!

On our first day we walked in to find a toy in our villa.  (They left toys daily for the kids.)  The villa was larger than our house.  The kids bathroom had a jacuzzi and a huge handicap shower. We were given coupons to take to the Star Tower to make "dream pillows" for the kids, and also to place Emily's star.  Since some of these little people lose their fights, they decided to give them a star to place up on the ceiling that would stay forever.  This would always keep a part of them in the village.  I believe they said there are 150,000 stars up in the main area, and they expect the new star tower (only opened 3 weeks ago now) to be full in 6-9 years.  A star for every sick child that will be placed, and with the guidance of a star fairy, always found by the child or their family if the child passes away.  What a beautiful concept!  They want your child's week to be "a week of yes's".  



Though she felt fragile this week, camera shy still due to the steroid weight, and flaring a bit, Emily still managed to have a wonderful week of dreams come true.  We laughed, we made new memories, we had fun, we enjoyed the rides but also the nature around us, the animals, and feeding the animals!  My favorite moment?  Watching my girls feeding the dolphins.  My son was busy pouting because he wanted to go ride a roller coaster, but my girls enjoyed the experience for what it was- an amazing experience and momentary connection with a dolphin.   I wanted to purchase the actual Sea World photos, but with the crowds of people trapping us then moving us along, combined with the drama that my son created, we somehow forgot to go look at them.  This is my consolation prize  :) 

I shall give a real update soon with actual details of the trip.  Let me say now that Gir seriously almost killed herself before we even got into our villa.  She tripped on a bag while trying to exit the van.  I saw her feet in the air flying as she went out the door.  She scared the heck out of me!!!  I was terrified, but she was somehow totally ok.  She was bruised up all over, and she bit her lip but otherwise she was fine.  She was very, very lucky.  I was worried that may set the tone for the week, but it was surprisingly calm and peaceful.  More to come soon  :)