Wednesday, March 4, 2015

Disney World, Day 3.

Monday, December 8, 2014

Magic Kingdom

It was misty and cold that day.  But, we didn't care.


It was so cute to watch this sweet girl's reaction to arriving at Disney.  She was beside herself!  It made whatever we had to do so worth it!

On the monorail.


The line to get on the monorail was pretty long and took some time.  Then, as soon as we got in the park, we went straight to guest services to get Harlie her DAS (disability pass).  The cast member asked me how many were in our party and we said 13.  She exclaimed "That's too many!" I thought she was a bit rude, but really didn't want to start the day off badly, so we didn't fight it.  She put us down as a party of six.

Months and months ago, I called and made appointments for the girls to have princess experiences with Bippidi Boppidi Boutique and the boys to have pirate experiences with The Pirates League.  I thought I was ahead of the game, but as it turns out, I was already too late.  They were pretty booked and I could not get the girls into the boutique at Magic Kingdom.  So, they had to go to Downtown Disney for theirs.  But, the only Pirates League is in Magic Kingdom, and I took the only appointments I could get.  Unfortunately, the boys were at 11am on Monday.  Thank goodness Laura had to call them for something.  She found out I had the appointments written down incorrectly.  So, if it weren't for that catch, the boys would have missed it!

Murphy said he didn't want to do it.  He said he was too old.  I am trying hard to respect him figuring himself out as he gets older.  So, I wasn't going to fight him.  But, when we got there and I said that I had an appointment for him, but he thought he was too old, the cast member called him over.  She showed him the info sheet and told him that dads do it, too, and you are never too old for anything at Disney.  Luckily, she talked him into it.

Our party then split up.  Tom, Mike and Laura took all the girls to ride on rides and Marcy and I stayed with the boys. While I didn't love splitting up, it was actually beneficial.  Throughout the week each parent/child got some time together.  I think it actually worked out really well. Tom got this picture while we were in the Pirates League.  Since we were in such a hurry to make our 11am appointment, we never got any other photos of us in front of the castle.  So, we saved that for Friday.



As soon as we went into the Pirates League, I regretted not signing up Harlie for this, too.  I didn't realize they did girls, too.  And they were super cute!  Honestly, I think Harlie would have enjoyed the pirate experience more than the princess one.  Ugh!!!  The feeling of regret is awful when I was supposed to make this a vacation of a lifetime!  If we get the chance to go back, I will definitely do this again and let Harlie join in on the fun.

Cooper, Murphy and Kaden waiting.
This was really fun.  The first thing they did was get their own pirate names.  They had some way of doing it by rolling dice or going by their birthday or something.  Then they selected which kind of pirate they wanted to be.

Murphy with Jack Sparrow and...?
Murphy getting all done up...




Murphy taking his pirate oath.  The pirates took their roles very seriously.



Cooper
After they were all done, they took us into a "secret" room and took photos of each pirate.

Roger Bloodshot
(aka Cooper)

Ben Pillagefish
(aka Murphy)


Tom Plankgunn
(aka Kaden)
They really loved it.  This was really fun.  Definitely worth the $35 for the basic package.  I thought it was money well spent, and would highly recommend it. Murphy ended up loving it and he was the one that wanted to wear his pirate gear every day.  By Friday, I had to put my foot down and make him leave it at the house.

After we left, we met back up with Tom and Mike and had lunch.  Unfortunately, we were never able to work out meeting back up with Mike and Laura and their girls.  There was just no way we could coordinate rides with our DAS and Fast Passes.

The Fast Passes can be scheduled ahead of time (via an app on your phone) or at the time of arrival at a ride.  The DAS can only be scheduled at the time of arrival at a ride.  You arrive at the ride, show them your DAS, and they write down a time for you to return.  Honestly, the DAS wasn't very helpful.  It's definitely more difficult to use than a Fast Pass since you can't schedule it ahead of time.  And you have to physically go to each ride twice.  And you can't go to a ride, get a time to return, and then go to another ride while waiting, to get another return time.  You can only get one return time at a time.  Which is frustrating considering the more work it is, the less a person using the DAS can experience.  The whole change in how they treat people with special needs is pretty sad.  It really makes me mad at the horrible abusers.

There still are some very kind cast members, thankfully.  And with our switching of the kids throughout the day (so the boys could ride rides that Harlie couldn't) we accidentally forgot to handover the DAS.  So, at some point in the afternoon, I had Harlie and didn't have her DAS.  I went on ahead to some rides (like the Winnie the Pooh and Peter Pan ones) and told them that I didn't have it because my husband had it and they looked at Harlie, and said, "That's okay, just go straight on in."  And they let us go into the Fast Pass lane with nothing and no wait!  So, that was really nice.

It was rainy/misty all day.  And we didn't have proper clothing on for that kind of weather. So, we had to buy a couple of hoodies.  Harlie's pants got wet and she signed "wet" and pointed to her legs.  Then she signed that she wanted to change them.  Well, that wasn't going to work, obviously. So, I went to get her a poncho to keep her dry.  She flat out refused to put one on. And, trust me when I say that when that girl makes up her mind, she makes up her mind.  It can be pretty frustrating. So, her pants got wet. And she got over it. No poncho for her. Which left us $8 to spend on something else.

We sought out covered rides.  Just like everyone else at the park.



After a while, Murphy looked like a zombie.  Sometimes, you just gotta let some things go.

The teacups.
 I don't know how I got this shot of Tom.  Pretty neat, though.


By the end of the day, when Harlie was getting low on oxygen, I was pretty disappointed in the DAS system.  We were trying to get on the Seven Dwarfs Mine Train (a roller coaster that Harlie could ride).  When Tom showed the cast member our DAS, she said to come back in an hour.  He told her that Harlie's oxygen was getting low and asked if there was anything she could do to make that wait time less, and she said no.  That's where the system is broken.  I tried really hard not to let it get me angry.  We put Harlie on the lowest flow of oxygen to keep her sats okay, and try to extend the life of the tank.  The whole thing felt so wrong.  But, she seemed okay and we made it so she could ride it and she was happy.  Sometimes you have to work really hard to let things go, so it doesn't ruin your fun.

On our way out, we caught a parade.  It was fun.


And apparently some fellas danced with Olaf.


We left at a decent time and went home for dinner.  The guys made fajitas, with a big bowl of guacamole.  Yum!

Each night the kids would rush to get in some pool time and Harlie would go up and watch a movie in the movie room.  She got on a Toy Story kick, and watched all of them that week.

After the kids were in bed, we hung out in the hot tub.  It was perfect because it was definitely cold at night.  That night, I wasn't feeling great.  So I went to bed earlier than the others.  I kept thinking about our day, and how we weren't able to be together as a group. That bothered me and so did the whole "no, I don't care if you run out of oxygen" attitude.  Granted, running out of oxygen would have been our fault. But, it was not possible to carry two tanks with us the whole day.  And going back to the car to switch out the tanks would have been a nightmare.  We tried it their way and it didn't work. Clearly, we were going to have to go back to guest services the next day and figure out something that would work better.

I woke up at 1am feeling very nauseous. Weird. Got up and vomited.

Awesome.

Hoping it was just a fluke, I went back to bed.  I woke up an hour later and the same thing happened. Trying my best to forget about it, I again, went back to bed.

Then, at 3am, the same thing happened!  Except this time was WORSE!  I was unable to grab my hair out of the way quick enough.  So, I vomited in my hair.  More awesome!  I didn't even earn this through partying all night and making poor decisions!!!  What gives?

So, it's now 3am and I had to take a shower.  And wash my hair.  Like three times.  Which means my hair will be wet.  Unless I blow dry it.  At 3am, when I clearly feel like crap.

Blow drying my hair takes effort and energy I didn't have.  So, I put my wet hair up in a bun, and went back to bed, wondering if I would be able to make it to Animal Kingdom that day.

Somehow, someway, (I'm chalking it up to Disney Magic) I woke up at 6am, feeling okay.  Not great.  I mean, you can't vomit three times in the night and feel great.  But, I certainly didn't feel as bad as I feared.  I don't know what that was.  But, thankfully, it was short lived.  It was a horrible night.  But that was it.  Whew!

Off to Animal Kingdom!  Day 4 coming soon!

Thanks for reading!
~Christy xo

Sunday, March 1, 2015

Disney World, Day 2

This won't be much of a post.  So, I'm sorry I took so long to post it.  I've had very little nursing in the past two weeks and the kids have been home so much because of the snow.  So my days haven't been very productive.  Repetitive, yes, productive, no.

Day 3 was our first day to a park, so I'll have a better post later about that.  But, for Day 2, Sunday, we didn't have anything planned.  Which, is how we wanted it.

The Steelers played that day.  So, Tom found a Steelers bar not far away and the guys went there to watch the game.  Laura, Marcy and I stayed "home" with the kids.  After just lounging around and enjoying the lazy time, we took the kids to the water park in the neighborhood.



It was a great water park.  The water was heated and the kids had a great time. There was a lazy river section, where you get on/in a tube and float around.  Harlie wanted to go in it so badly.  But, it was deeper, colder (not heated) and had a current.  There was no way I felt comfortable enough to take her by myself.  I would trust Tom could handle it, but not me.  I saw disaster all over that.  So, I had to tell her no.  I know she doesn't understand how risky stuff like that is.

If Tom had been at the park that day, I would have had him take her down a slide.  She so wants to go down a water slide.  But, that scares me, too.  Too risky by myself.

Regardless, I think she still had fun.  It makes me nervous, though.  I have to walk beside her most of the time.  If she's in water that's too deep for her to sit in safely, I worry that she'll fall while walking and submerge herself.  Of course, she doesn't understand all that and resists holding my hand.  Oh, the downsides of a trach...

After the football game, the guys went to Costco and stocked up for the week.  I think we had frogmore stew (shrimp, scallops, sausage, corn, onions and potatoes).  Yum!

This was our view for most of the week (when we were at home, I mean, and not at a park).


The guys did most of the cooking (and pouring) and we sat on the other side of the island, enjoying drinks, food and company.  It really was a glorious vacation.

More soon!
~Christy xo

Liver Update

Well, it's been like eight months since my last blog post. I started this post back in February. I think I'll just start with what I...