Celebrating Megan's Kidneys -update 4/30, pg10

[erika412]

Hello! And welcome to our trip report. We are middlepat and erika412 and we’ll be writing this report together. Erika has a PTR here if you want to read that, but it isn’t nearly as exciting as our TR.

We had a few other people join us for this trip—namely our kids! Mary is 6, Shannon is 5 and Megan is 2. Yup, that’s right. Three girls. Middlepat is way outnumbered! Mary and Shannon have been to Walt Disney World twice already, but this was Megan’s first trip. It was a special trip in another way too.

The purpose of this trip was to celebrate Megan's kidneys. It sounds kind of a strange reason for a trip, but Megan had kidney failure last year in December 08 (post infectious nephritis) when she was only 15 months old. She ended up on dialysis and they were talking transplant. She was in and out of the hospital and I (Erika) spent all the time she was in with her. Mary and Shannon knew where I was, but obviously also had their lives uprooted. Megan miraculously turned around and we decided that we wanted to have some alone time with our family once she got healthy enough to travel. She is still on various medications- this is a long battle for her which may ultimately still end up with a transplant, but is doing so well compared to where she was last December. (if you're curious more about the nitty gritty details of what she went through, she has a carepage at https://www.carepages.com/carepages/Megan_Newell Megan also has some food allergies (dairy, soy, and egg) and we were a little nervous about not being in control of her food.

Obviously our one and only choice was to go to Disney World. We love Disney World. Yes, we are one of those families. Perhaps you might know another one or two? We had the task of finding a room for 5 this time. We looked at all the options and decided on the Polynesian. We also decided to drive for the first time from Chicago. I was so excited for the Poly and even the drive because the girls are pretty good girls when it comes to car rides.

Here’s a shirt I had made for the trip:

So, November 6th, the girls went to school as normal in the morning. They knew we were going to be leaving before lunchtime. What Shannon didn't know was that middlepat was going to be the Mystery Reader that day. But before that we packed up the van. I had read a suggestion here of using storage boxes instead of luggage for a long car trip so we decided to do it. It ended up working out extremely well.

Shannon's teacher allowed Middlepat to come in early and read to the class. It is a huge deal for the kids and when the school secretary intercoms down to the classroom that they have a mystery reader, you can hear the screams of excitement in the school office. To be honest, even though they are just kindergartners, it can be a little intimidating! Middlepat brought a Dr. Suess book which Shannon ended up taking from him and reading to the class.

After that, it was time to come home, change out of uniforms and a bathroom break and hit the road.

The exact time we left:

The girls have no idea how long they will really be in the car:

Coming up next-- More of the drive.

 

[kellyw8863]

Hi Erika - I thought I recognized your username, but didn't know you were on here (I'm kellyw from the FP). We're in the process of planning a Make a Wish trip for my youngest, Alison, so I've spent a lot of time lately perusing the PTRs and TRs. At any rate, I just thought I'd say hello. Great start to your TR. I think it's so neat that middlepat got to be the mystery reader for your departure day! Your girls are adorable, and I love the t-shirt. Looking forward to reading more of your TR!

Kelly

 

[erika412]

Hi Kelly! Good to "see" you here. I just read through your MAW PTR. Ali and Maya are adorable. I think it is amazing that you and Gabriel found each other too. I've been a member here for a while, mostly a lurker until our last trip when I became more active. I'm journaling our trip on the SE too, but getting a little more specific here. Plus, DH will be part of this TR too.

 

[FreezinRafiki]

Yay!! Disney World and Kidneys - 2 of my favorite things now rolled into one! Just add a dog and I'd be in heaven. (Or is that a still a sore subject? )

Anyway, nice start to the TR! Can't wait to read more!

 

[DisneyDaddy-O]

I'm here and ready to read, great to hear Megan is doing better, I can't think of a better place to celebrate.

I never would thought of the storage box thing, great idea.

 

[praisehisname]

I'm in; great start so far!

 

[erika412]

Yay!! Disney World and Kidneys - 2 of my favorite things now rolled into one! Just add a dog and I'd be in heaven. (Or is that a still a sore subject? )

Anyway, nice start to the TR! Can't wait to read more!

Totally sore. Christmas came and went and there was no dog with a bow under the tree for me.

 

[erika412]

I'm here and ready to read, great to hear Megan is doing better, I can't think of a better place to celebrate.

I never would thought of the storage box thing, great idea.

I'm in; great start so far!

Hi! Middlepat is working and since he never goofs off* at work, I thought I'd say hi and welcome.

*sites like these are restricted

About the storage box, I read about it here and thought it was a great idea. We just packed a duffel bag for our overnight stops on the trip and one smaller box of Megan's medicine. The rest of the boxes stayed in the car. Then at the Poly, we were able to stack them in a corner out of the way. No bulky suitcases for the 5 of us in the room.

 

[kellyw8863]

About the storage box, I read about it here and thought it was a great idea. We just packed a duffel bag for our overnight stops on the trip and one smaller box of Megan's medicine. The rest of the boxes stayed in the car. Then at the Poly, we were able to stack them in a corner out of the way. No bulky suitcases for the 5 of us in the room.

Such a good idea! I so wish we were driving. One, for ideas like this and two, I'm a wuss when it comes to flying. Bah!

Can't wait to read more!

 

[middlepat]

Totally sore. Christmas came and went and there was no dog with a bow under the tree for me.

Ummm.... I'm just looking out for your health, ya know. As they say there are no truly allergen free dogs.

Welcome guys, and as for the goofing off comment, I resemble that remark.

 

[MAJ RN]

What an amazing way to celebrate!! I pray that Megan continues to do well and stay healthy!! Can't wait to read more about your trip. That is quite a trip from Chicago to Orlando!!!


melissa

 

[erika412]

Thanks Melissa!

 

[erika412]

We decided to drive down I-57 through IL to bypass Chicago and also Indianapolis. We were thinking if we left the Chicagoland area at noon, we'd probably get through Chicago OK, but we might hit Indy right as Friday's rush house was starting. Even though I've lived in Chicago for the majority of my life, I've never traveled south on 57. So, we're a few hours into the drive a few hours and all of a sudden out of nowhere appears the biggest cross I've ever seen. I took a few pictures of it, but the following actually shows how big it is compared to a car.

I was curious about it so I checked it out on my iphone and found this link. http://www.crossusa.org/ I'll leave the majority of my thoughts out of this, but I can't help wonder if the millions it took to build this thing couldn't have been spent more appropriately - like on feeding the hungry or housing the homeless. But what do I know?

So, we continued to drive and drive and drive. The girls did pretty well, although middlepat had already threatened to turn the car around once early on. They were just so excited to finally be going. I twittered some of the trip on middlepat’s account for the guys in the DisDads group. I felt like an intruder in their man’s den when I had to post in their group that we were updating. Once we arrived, we completely slacked on it. We were having too much fun!

Somewhere near Metropolis, IL- claim to fame being the Hometown of Superman- we stopped for gas and the girls went running to these cut outs which were set up outside the gas station. I think they were a little short for them.

We made through Nashville and then the girls hit their breaking point. We stayed at a Hampton Inn & Suites. It ended up being a pretty nice hotel since we were just hoping for the best when we stopped. We were all in bed by 10 or so and woke up around 5am. At 6am, we were grabbing some food from the continental breakfast on the way out the door and we were back on the road. The plan was to drive as far as the girls would let us, but be open to stopping for the night somewhere if needed. It was a long trek, but the mountains were beautiful. I have to admit that as beautiful as they were, I think they slowed us down a little.

Once we got to flat, wide open lands, I felt like we were really booking along. At one of our stops, Shannon and Mary decided to switch places and Shannon went to the back row. I also gave her a couple of books to read which might have been a huge mistake. At some point, she started to complain about her throat hurting. I thought “oh, here we go, swine flu has arrived.” I was so afraid of getting h1n1 right before the trip or while on the trip. It seemed like a lot of people were coming home with it from Disney World. I'd never used Purell often before, but I was a mad-woman with it this trip. She didn’t feel warm and only said that her throat was bothering her.

We made excellent time and arrived in Orlando about 5:30pm. Once again we had no hotel booked because we weren't sure where we'd end up for the night so we went to Downtown Disney to find a place. The first place we tried was the Doubletree but they had no openings. We ended up just a little bit away at the Sheraton Safari. We decided to go for a quick dinner and then head to bed. The next morning we were planning to check into the Poly and then head to the Magic Kingdom. Off the Disney route, we went to Perkins. This was our first "sit down" restaurant of the trip. With Megan's food allergies (dairy, egg and soy) we were so nervous about eating out of home and out of our control. The waitress was wonderful trying to accommodate us. Shannon didn’t eat much at all and I was still concerned about her. After dinner, we headed back and settled in for a night nice. Or so we thought. Around midnight, Shannon screams out and then proceeds to throw up all over middlepat and their bed. (At least she wasn't sleeping with me. ) I took her to the bathroom and middlepat dealt with getting the bed remade. The hotel staff came up so quickly and were great about changing the bed. I think what happened is that she got a little car sick. She is kind of prone to stomach issues and usually says that her throat feels “spicy” when she’s a little nauseated. All of her complaining seemed to happen right after she and Mary switched seats and Shannon went to the back row. In the morning she was perfectly fine and none of the rest of us got sick.

Coming up next- Finally checking into the Poly and going to the Magic Kingdom

 

[FreezinRafiki]

It was a long trek, but the mountains were beautiful. I have to admit that as beautiful as they were, I think they slowed us down a little.

I wished we had seen some of them on our drive in October. Both times we hit Tennessee in the middle of the night and saw nothing but the road ahead of us and some vague outlines of mountains. Maybe when we drive down in March we'll arrange it so we can see something.

Around midnight, Shannon screams out and then proceeds to throw up all over middlepat and their bed.

I am sooo totally not laughing at this.

Oh, she's fine now? Then yes, I am laughing my butt off at this!

 

[middlepat]

I am sooo totally not laughing at this.

Oh, she's fine now? Then yes, I am laughing my butt off at this!

Glad to see my DisDads brethren are there to back me up...

 

[praisehisname]

Around midnight, Shannon screams out and then proceeds to throw up all over middlepat and their bed.

Oh no! I'm glad it was just car sickness and that she felt better soon!

 

[erika412]

So, where was I? Ah yes, about to hit Disney property. Shannon was feeling fine at this point and was obviously over what ever she had though I'm still leaning towards car sickness. The Sheraton was nice, but it seemed a little bit saccharine to me. We took the elevator to the main floor and the lady at the desk was over the top sweet asking a bunch of questions about our plans for the day and I kept thinking I don't want to sit here making small talk, I WANT TO GO!

I think we were all bouncing out of seats by this point.

We checked out of the Sheraton Safari and tried to make our way to the Polynesian. Unfortunately, we weren't in the right lanes for the MK resorts, and ended up at the MK. The parking cast members guided us back through again and we eventually made our way around to the Poly. Now I felt like we really arrived.

I bought the girls matching shirts for the first day and made them tutus with directions on I found on the DISign forum. Megan's shirt had "Celebrating My Kidneys" on it. We took some pictures in the lobby of the Poly while middlepat checked us in. I completely missed the child area across from the desks so instead the girls ran around the lobby and I followed. One of the DVC cast members stopped me and asked about their shirts- particularly Megan's. She also wanted to know about the tutus and when she realized how easy they were, she planned to make them for her granddaughter.

Our room was obviously not ready as it was around 9am, so we went to Captain Cooks for breakfast and to get our resort mugs. I love the resort mugs, but I did get a little tired of their decaf pop options. I can't drink caffeine after about noon or I'm up all night. That might not have happened on the trip since you get so tired out at a day at the Parks, but I didn't want to risk it. I usually had the pomegranate lemonade and every time I ordered a lemonade anywhere on property, the server always clarified that it would be the pomegranate. It got old after a while.

After breakfast, we headed off to the Magic Kingdom via the monorail. Per TourguideMike, it was the last day of Jersey Week and supposed to be fairly busy, but I'm a true-ist, I cannot NOT go to the Magic Kingdom for our first park.

Waiting for the monorail:

and on the monorail:

We arrived! We arrived! After getting through the lines and the gates, I first took a picture of the girls at the entrance of the MK.

Yes, Megan does have her shoes on the wrong feet. I stopped fixing them after a while.

Main Street USA was all decked out for Christmas. I LOVED the Christmas decor. We had been once before in November years ago, but I didn't pay that much attention to the decor as it was one of my earlier adult trips. I really felt in the Christmas spirit this time.

We stopped and took some Photopass pictures with the Toy Soldiers. It became our Christmas card this year- although the picture ended up darker than I would have liked on the card.

Next up- Which ride did the girls choose for their very first ride of the trip???

 

[Blanche_Neige]

Hello! And welcome to our trip report. We are middlepat and erika412 and we’ll be writing this report together. Erika has a PTR here if you want to read that, but it isn’t nearly as exciting as our TR.

We had a few other people join us for this trip—namely our kids! Mary is 6, Shannon is 5 and Megan is 2. Yup, that’s right. Three girls. Middlepat is way outnumbered! Mary and Shannon have been to Walt Disney World twice already, but this was Megan’s first trip. It was a special trip in another way too.

The purpose of this trip was to celebrate Megan's kidneys. It sounds kind of a strange reason for a trip, but Megan had kidney failure last year in December 08 (post infectious nephritis) when she was only 15 months old. She ended up on dialysis and they were talking transplant. She was in and out of the hospital and I (Erika) spent all the time she was in with her. Mary and Shannon knew where I was, but obviously also had their lives uprooted. Megan miraculously turned around and we decided that we wanted to have some alone time with our family once she got healthy enough to travel. She is still on various medications- this is a long battle for her which may ultimately still end up with a transplant, but is doing so well compared to where she was last December.

Congrats Megan! Glad to hear you are doing great You are not the only one celebrating Kidneys

We are celebrating my husband's 10th years Kidney Transplant anniversary!

10 year not one rejection episode

The Disney CM told me that the Celebration of life was the most important and it truely is

 

[erika412]

Congrats Megan! Glad to hear you are doing great You are not the only one celebrating Kidneys

We are celebrating my husband's 10th years Kidney Transplant anniversary!

10 year not one rejection episode

The Disney CM told me that the Celebration of life was the most important and it truely is

That is so awesome!!!! Stories of excellent survival after a transplant like your husband's make me feel so much better if Megan ever needs a transplant. Her doctors do anticipate needing one eventually, but I'm holding out hope they're wrong.

 

[praisehisname]

Next up- Which ride did the girls choose for their very first ride of the trip???

Love the picture! My guess is Small World?