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
 

Richmond Marathon

For those of you not on Facebook, I could not run the Richmond Marathon as planned.  Almost three weeks ago (just a few days after my last 20 miler) I got sick.  I wasn't too worried at the time, because it was taper time - and I still had three weeks till marathon day.  This sickness went straight to my lungs and stayed there. After a week, when I felt like I was actually getting worse, I went to the doctor.   She put me on Prednisone and some inhalers.  After two days, I still didn't feel better.  So, she called in some antibiotics for me.  But, by then, I knew it was too late.

I would have had to get better, and run a little before marathon day.  And I knew these lungs would need more time.  Just walking up the stairs would send me into a coughing fit.  And it always felt like an elephant was sitting on my chest.  I felt horrible.  I have finally got some energy back (not 100% yet) but my cough is still hanging on.

I was crushed when I realized that I wasn't going to be able to run.  I had many battles in my head. And there was so much of me that wanted to ignore what was wrong and run it anyway.  But, when you're the mom, you can't always lay it on the line and give it all you've got.  You have to save some for later (we have a Disney trip coming up after all!).

So, I called it.  After training since May/June, the marathon was not to be.  In the past eight years, I've learned how to deal with disappointment.  And sometimes things have a way of working out.  You just have to give it time.

Just a couple of days after realizing I wouldn't be running, Tom found the Charleston Marathon in SC.  It's January 17th.  A Saturday.  And it's perfect!  It allows me to still capitalize on my training without having to start over.  And we LOVE Charleston (we have both lived there twice), it's not too cold there and I would love to seize the opportunity to run a marathon in another state.  I always thought it would just be too difficult to work out the logistics.

So, I've registered, and the hotel and dinner reservations have been made!  Some friends are going with us and I am SO excited!  The only negatives are that I will have to continue to train for two more months.  And I thought marathon training was too long before!  And I'll have to train in the cold (which I HATE) and through our Disney vacation and Christmas holidays, which is a total downer.  I'll have to do another 20 mile run without the support of the marathon training team.  But, my friend Bethany is going to run the marathon, too, so we can train together.  And we are so lucky to have such an amazing group of running friends - they've assured me that they will help us with water stops and support. How awesome is all that?

I'm so thrilled!  And after the marathon, they serve free shrimp and grits and beer!  Love it!

If I hadn't gotten sick, I would *hopefully* be close to finishing the marathon right now (in the freezing cold front that just hit Richmond). Instead, I am sitting at home in my pajamas, rolling with the punches.

And Harlie caught what I had/have.  She's miserable and back on oxygen 24/7.  We took her to the doctor yesterday and he put her on antibiotics.  Hopefully, she'll kick it faster than I did.  And if you can believe it - this is the first time she's been sick in 2014.  So, we had a good run.  And, with any luck, she'll be well enough to go meet her new cousin in Pittsburgh next weekend and we'll all be healthy by Disney.

More soon!
~Christy xo

Trunk or Treat

On October 26th, our community pool had a Trunk or Treat.  It was so much more attended last year, but I still think it was a great event.  My kids love it. Thank you to the volunteers who organize this! It is an easy way to get the kids out and get more use out of their costumes.  Plus, more socializing for me, which is always good.

Anyway, we are totally lame in the car decorating department.  One day, we'll think ahead.  Anyway, here's my Teenage Mutant Ninja Turtle hanging out, enjoying the day...

I think this is my favorite costume for her, ever.  They had a parade before the judging of costumes.  Yes, that's Harlie causing a huge gap in the line.  Just like when she went to school.  And as usual, I couldn't help but feel bad for the kids who ended up behind her.

We took Rooney and Murphy wanted to walk him in the parade.

Here's the end of the line...

But, hey!  She walked it this year!  Last year at this very event, she was in her stroller, on oxygen the whole time.  This year, she walked it!  I'm so proud of her!

Murphy was an Army man, and Cooper was Optimus Prime (with a squid head, whatever).

Before the parade, Harlie wanted to go into the bouncy house.  But, it was really full and too rough for my comfort.  So, we wouldn't let her.  During the judging of the costumes, she turned around and saw the EMPTY bouncy house and made a beeline there.  I didn't have the heart to stop her.  And wouldn't you know that she won best super hero costume?  And she wasn't there to know it. Ugh!  Oh well, she loved her prize when she got it later.

We let her bounce alone until after the treating from car to car was over.  Then she went from car to car while the other kids went back to the bouncy house.

Anyway, another fun event for the fall.  And very different from last year when she was in Boston for surgery.  In fact, this is my post from a year ago.  Yes, so very different, indeed!

Sometimes, when I think about the ups and downs of her life, I just shake my head in disbelief.  I've lived it and it's still hard to imagine it's our reality.  Crazy.

Much love!
~Christy xo

Pumpkin Patch

On October 19th, we went to the pumpkin patch.  This year we went to Lloyds Pumpkin Farm and we loved it.  It is much smaller than the Ashland Berry Farm and a hay ride isn't required to get your pumpkins.  The pumpkin patch is right there at Lloyd's, whereas at Ashland Berry Farm you have to take a hay ride to the patch.  The hay rides always kick up so much dirt and dust - things I'd rather not have around my trached kid.  Plus, there's an awesome corn maze at Lloyd's!

The only negative is that Harlie just can't do that much walking.  She gets really tired and slow.  And her back is giving her trouble again. She complains about it every time she does any amount of true walking (other than in the house).  The area that hurts her is the area in her spinal fusion that got infected after surgery.  She is going to have to have more surgery there, but they would rather wait as long as she can stand so she can grow more.  Once they fuse the vertebra, there's no more growing in that area.

Anyway, we went as slow as she needed us to go, until she could go no longer.  Then we carried her.  It's a good thing she's still so tiny!  Although, after several minutes of carrying her piggy back, she feels pretty heavy.  Like when I had to carry her to the potty.  She's so worth it, though!  I mean, just look at this kid!

Cooper insists on wearing his tuxedo shirt as much as possible.

Murphy is starting to act more like a teenager, which does not make for a happy me.  Or anyone that's around him.

Thankfully, this girl is such a happy kid.  It really blows my mind sometimes.

Something about this picture I just love...

Feeding the cows.

It was a great time.  We are loving these moments of typical-ness!!

More soon!
~Christy xo

Dental Surgery

On Thursday, October 23rd, Harlie had dental surgery at VCU/MCV.  The night before, she told me she was scared.  But, I know she was ready to have that tooth out.  I really think she understood that pulling it was going to help her feel better.

And, just to recap since it's been a while since I talked about this, she had a tooth that came in on the bottom.  But, since she has no room for her teeth to move, it popped out the front of her gums.  Since it was protruding forward, it rubbed a hole in her lip and then nestled itself right on in there.  Ouch!

We had to check in at 8am. She's always in a good mood.

My friend Lynda came to hang out and bought me breakfast.

This is such a pretty picture - of them both!

I'm always surprised when doctors/nurses come in and tell me they remember her.  The anesthesiologist said she recognized her history as she was reading it. Even after all these years, it's still hard to believe that she's so different (or rare), medically speaking, of course.  And they always comment that what they read before walking into the room doesn't match what they see when they meet her in person.  I guess I take all of our successes for granted sometimes.

I remember when they would give her Versed to make it easier on her to be taken to the OR by them.  She didn't need it this time.  She just said bye, and they rolled her on down the hall.

After they put her under, they took some good x-rays. They examined all her teeth to see if there was anything they had to do while she was under. The doctor took a picture of her mouth with his cell phone and brought it out to show me. The other side of her mouth was about to do the same thing. The tooth on the opposite side was coming in and was already causing irritation. So, they took that tooth out, too.

The dentists were great.  The department chair and a resident did the work.  And they were awesome.  I can't speak well enough about all the staff at VCU dentistry.  If only they

When she came out, she wasn't as chipper. She wanted water and she was pretty irritable. Anesthesia said she did great and there were no issues.  They wanted us to wait a few hours and then we could go home. Overall, it was a pretty easy day.

They said that extracting teeth isn't that painful. But, Harlie seemed to be pretty uncomfortable for a couple of days. She verbalized that it "hurt."

Here are her teeth.  Aren't they pretty?

Thank you so much for all your support!  We loved seeing all the photos of you on Facebook in your We Heart Harlie shirts!

I wrote this post a while ago, and forgot that I never finished it.  Oops. I probably caught some bug while I was in the hospital that day because I got sick a few days later and have been out of commission since.  I'll try to get caught up later today.

More soon (I hope!)
~Christy xo