Sunday, November 23, 2014

Disney World

You might remember this post from last fall.  It's funny, because when I just re-read it, I actually thought we could go to Disney in February.  Hahahaha!

So, over a year later, the trip is planned, booked and is exactly two weeks from today!  Wow!

We started planning it within a few months of receiving this wonderful gift. We quickly learned that you need to plan it months and months in advance.  Tom worked with his friend, Celeste, who is a Disney planner.  After many emails back and forth, finding a place on property proved to be very difficult.  For one, we need more than just a single hotel room.  We are taking our niece, Maggie with us.  She is trained to help us take care of Harlie and she is a Disney fanatic, so it was a no brainer that she had to come.  So, three adults and three children, one of which has equipment that runs all night.  The bigger hotel rooms are very pricey.

The other issue is that we have to have a Plan B for Harlie.  We know she gets fatigued easily and quickly.  Even if it's something that she enjoys.  She knows her body and what it can do, and when it needs rest (most of the time).  Celeste did a great job talking us through things. For example, at first, we didn't think the resort where we stayed was all that important.  I mean, it's Disney, all of them are good, right?  But, she realized that when Harlie got tired and we went back to the resort, that's where we would hang out.  So, then a zero entry pool became more important.  More on why that was so important in a future post (which I've already started, so I promise it's coming).  Then the thought of hanging out in a hotel room to get a true break (hanging out in a pool with Harlie is hardly relaxing, especially without a zero entry) wasn't very appealing.

Another challenge was travel.  We were originally thinking we would stay at a resort on the monorail. But, one of the major resorts is under construction and she said that it was making the monorail kind of iffy sometimes.  She said it would be better if we had a car we could rely on when needed vs. depending on the monorail and being up the creek if it wasn't working.

In the end, there were too many obstacles.  And if you know me, you know how much I hate planning.  So, Tom found a large house just off property.  It has a heated pool, with a large wading area, which will be great for Harlie!

And we are sharing the home with friends (two families, Mike, Laura and their two girls, who we have spent spring break with the past two years and Mike, Marcy and Kaden) which made the rental home more affordable for all of us.  A win-win all around!

Once the house was booked, we purchased our plane tickets. Woohoo!  But, we still couldn't talk about it openly because we had not told the kids yet.  There were a few times that we almost slipped and said something about Disney with them in the room. I was afraid I would mess up, so I really wanted to tell them.  Plus, I wanted them to look forward to the trip.  I wanted the anticipation of the trip to be part of the fun.

So, the weekend after Halloween, we had Mike and Marcy and their son, Kaden come over for lunch.  Marcy and I made a sign, and then cut it into puzzle pieces.  Tom hid the pieces around the house, and the kids had to find them, then put them together to read the message.


Ahhh, parenting. I had this vision of how things were going to go when we told them.  My vision was awesome.  And I was SURE it would go just the way I imagined it. First, it took them longer than I thought it would for them to figure it out.  Harlie and Cooper can't read yet, so Murphy read it aloud. They all looked at us and said, "Right now?"  And we said, excitedly, "No, in 34 days!"  And they all looked VERY disappointed and exclaimed, "Awwww!"  At that point, Harlie turned around, headed to the living room, and asked if she could watch TV.

Awesome.  To us 34 days is no time.  But, to them, 34 days might as well be never.  Murphy seemed to be the most excited.  And he did hop around a bit.  It really only took a few minutes for it to sink in.  And then Tom pulled up the photos of the house we rented so they could see where they'll be staying.  That really helped.  And, of course, the Mickey ears helped, too!


And, as usual, Harlie had to put them on the dog.


Every day since, we have been counting down the days.  And the kids have been watching Disney parades on Youtube.  If their faces - from just watching the videos - are any indication, we are going to have a fantastic time.

I managed to book Harlie and Mike and Laura's girls appointments at the Bippity Boppity Bootique salon so they can be the princess of their choice.  And I booked appointments for all the boys at the Pirates League.  That's about all the pre-planning I could muster.  It's a little intimidating to see that people have already booked fast passes for rides.  And for specific times!  Seriously?  Thirty days out, you already know where you're going to be at a certain time?  I don't know about you, but I don't call that a vacation.  And with Harlie (especially now since she's sick) there's no way I can predict where and when we'll be somewhere.

So, we are going about it differently.  We are going to go with no real expectations, other than to just have fun and enjoy the experience.  We will be happy with whatever we can do. And the house and the amenities that come with the house (like a water park) will hopefully mean that no matter where we are, that we'll have fun.  We are all so excited!  I think Tom is more excited than anyone, though.  He researched the heck out of restaurants (I think this is his favorite pastime activity) and he made a reservation for an adult dinner out.  I'm pretty sure he will know the menu by heart by then.

If you ask Harlie who she wants to see while there, she says, "Mickey."  So, I just can't wait for that moment.

Of course now we are all a bit nervous because she must have caught whatever I had.  She's now sick, and has been for a week.  We took her to the doctor last Friday.  He put her on antibiotics.  And we have been giving her a lot of vest and breathing treatments throughout the day.

A week later, after her walking downstairs with no oxygen, these were her numbers...


The 73 is low even for her.  But, her spirits are good.  She's not playing - just watching a lot of TV.  So, as long as she's not miserable, I am going to think positively.  We called her doctor to let him know that she was not better.  So, he called in a different antibiotic.  So, we'll see if that one works.

The big bummer is that even if she gets better before we go, she will most likely still need to be on oxygen.  I'm hoping I'm wrong.  But, I seriously doubt that her lungs will recover 100% and be able to function completely free of oxygen support.  So, that means that we will be lugging around oxygen at Disney.  And that means that we have to have oxygen available to us while there.  Disney will not help us with this since we are not staying on property.  So, we are on our own.  I asked our supply company if they could help.  Another hiccup will be that the companies in Florida will not likely accept Virginia Medicaid. So, we'll have to pay cash for it.  But, that's okay.  I think it's worth it. ;-)

I am still not well.  It's been FOUR weeks now.  I am so tired of feeling tired and being unable to run or work out at all.  I've heard that the cough will likely linger for a while longer.  I'll deal with that. I just would like to have some energy back.  I do think my lungs actually feel a bit better now.  I got out the child's large vest that they sent for Harlie (that was too big for her) and got some vest and breathing treatments myself.


Harlie got such a kick out of seeing me go through the torture, too.  Now I understand why she resists the vest treatments.  It's pretty unsettling and uncomfortable.  But, I think they work and are much more appealing than having to go into the hospital.  And I fully believe that the vest has kept Harlie healthy.

Unfortunately, we weren't able to go meet my new niece, Maggie this weekend.  So, Tom took the boys and went to his mom's in PA.

Mandy's baby, Maggie.
I am totally bummed.  I would have loved to have held her, too!  Since that left just me and Harlie, her nurse, Dawn, came to stay with us this weekend to give me a chance to really rest.  There is no resting with kids around all the time.  So, that's been really nice.  And last night Marcy went and got soup for me, brought it to me and then walked Rooney for me!  I am so lucky to have such wonderful people in my life!

Okay, well, that's it for now.  I'm working on my next post already.  So, hopefully I'll be able to do that today.

Thank you for reading!
Much love,
~Christy xo
 


1 comment:

Susan said...

Oh my gosh I can imagine the joy Harlie must have felt seeing you use her vest.(Plus I enjoyed the chuckles.) I think it is good for us to experience what our kids do (when possible). It sounds like you are all set up to have an awesome Disney vacation, whatever happens. I hope it exceeds all your expectations! You guys deserve it!