Mickey Power!!! - July 2019 - Once Upon a Time When DHS Opened After Sunrise - 2/27

[kclark9830]

Ok. I lied.



This was going to be the first park day, but I’m going to slide in a little extra update about R in here. Read it if you want or skip on to the good part. Something popped uo on DW’s facebook last night so I thought I’d just share a little bit of his backstory.

I thought I’d mention this because I just kind of jumped into this TR without any in depth Intros. I really didn’t expect there would be as many people follow as there are, to be quite honest. And I appreciate the ones of you who have jumped back in after my absence from the boards.



But I’m seeing some new names... I know some have said they’ve read past TRs and maybe didn’t comment, but just in case I want to give some background on this guy.



His background and the associated concerns cause us to have some stress during the course of our trip.



When DW was 20 weeks pregnant, we found out in an ultrasound that R had a hole in his diaphragm. It is called Congenital Diaphragmatic Hernia (CDH). They basically said that in addition to the obvious problems, the biggest issue is that he would not have fully formed lungs because they form later in the developmental process and the abdominal organs that were spilling into his chest cavity would crowd them out. They said he had a 50% survival rate.



It became a pretty crazy year from that point forward. We had to go to a different hospital for delivery and neonatal care. That meant they wanted DW to “live” in a hotel adjacent to the campus a few weeks before her due date. They wanted him to go as full term as possible, but they didn’t want to take a chance on delivery occurring somewhere else. Ultimately, they made a surgery room right next to the NICU into a delivery room and whisked him away immediately. After he was born he spent 3 months in the hospital.



It was a series of challenges after he was born. There were surgeries, there were 10 days spent on ECMO (a machine that took the blood out of his body, filtered it, put oxygen in and sent it back into his body), and there were plenty of surprises.



These pictures are R on ECMO and the ECMO equipment

Saw this picture... and I forgot we had Pluto there with him. Kind of explains why he loved Pluto so much on our trip!

2 months old... first time we got to see him without tubes or tape on his face

One of the challenges we had to overcome before he could come home was feeding. Babies with the issues he had, coupled with being fed through tubes and having tubes running down their throats tend to be slow to figure out oral feeding. By the time he was discharged he’d nurse some, but most of his nutrition was through a feeding tube, which is why he had the G-Tube put in. He figured it out, over time, and started gaining some weight through oral feeding. They had us keep the G-tube in until last summer when we were able to show his pediatrician that he had gained sufficient weight over the course of a few months without having to feed through the tube. He’s still a runt though. As of our trip, 3 year old R measured 35 ½" tall and a whopping 23 pounds.



Anyway... Last night marked 1 year since the tube came out.



R gives us a lot of challenges to this day relating to his medical history. Actually, going back to last year, his g-tube didn’t heal correctly and he did have to have surgery last fall to correct that. They also found another hole in his diaphragm around that same time. It could be due to the patch not being attached well or it could be a hole in the patch. They aren’t sure. Originally, they were going to repair that when he was in surgery to repair the g-tube site. Instead, they decided to let him grow more first. He wasn’t showing any signs of intestinal blockage and they wanted him to grow and give them more room to repair it and maybe more material to work with because the hole is very close to the esophagus and aorta so they need as much room to maneuver as they can get. So even more than normal, we’ve been keeping a close eye on him for any kind of abnormal digestive symptoms from him for the past year.



R also has a shunt that was put in during his time in the NICU. He developed hydrocehpalus, kind of out of the blue when we were close to being able to talk about coming home so we had that setback to overcome. They basically told us that this shunt would probably fail in some way after he got to be about 2 years old, because that just tends to happen when they put them in babies. So we feel like we’re on borrowed time before they’ll have to change out his shunt valve or tubing.



Basically, the result of his issues is that reflux is a bit of a problem and we have to constantly watch for any signs digestive problems. Has he pooped today? How long has it been since he did? What did it look like? These are just day to day concerns. We also are very much in tune with subtle behavior changes or irrational behavior that might indicate an issue with the shunt.



And of course, what better to mess with your natural food intake/digestion and irritable behavior than a week at Disney World?



I know several of you are in the medical profession. Over the course of his adventure, we’ve made friends with some of his nurses and doctors. They were heavily invested in caring for him, and for us. One of them worked at night and she was there the first night when he was born and the decision was made that he had to go on ECMO. She actually ended up picking up some extra shifts to come in and rock with him. She made a sign to help her co-workers better care for him.

He had nurses in the NICU that laughed with us, cried with us and some have been there for some of his milestones since. Those of you who are in this field, I just want to let you know I appreciate what you do. I know it isn’t an easy job, but you’re definitely in a position to make a real difference in someone’s life!

I haven't read your trip update yet, but I wanted to say to this...♡♡♡♡♡♡♡♡♡♡♡♡.

I have had two medically needy (that's my own term, and I don't know where or when or why I started using it, but i apologize if it's weird) children. My oldest daughter had cancer at 3 & 9, and she almost went on the ECMO machine at one point but that never materialized. And my youngest was born with a congenital heart condition.

So all I'm saying is I get it, and I'm so glad your son is doing pretty well. I am sorry for the stress of just waiting for medical things you know are coming. It's very nerve wracking and stressful. Hugs to you and your family.

 

[kclark9830]

Those darn other people. I feel you!

Overall, it does sound like a fairly productive first day.

 

[missangelalexis]

Your little guy has some a long way; I'm sorry that it is still so challenging for you all. Always sending your family positive vibes!

First day sounds like it was off to a good start! You got a decent amount of rides done, even with the longer than expected lines!

Ah sorry you've been turned off by SM

 

[pkondz]

This was going to be the first park day, but I’m going to slide in a little extra update about R in here. Read it if you want or skip on to the good part. Something popped uo on DW’s facebook last night so I thought I’d just share a little bit of his backstory.

I was aware of most of what you just wrote, but not all of it. Glad I didn't skip it. (I wouldn't have anyways.)

I really didn’t expect there would be as many people follow as there are, to be quite honest.

Actually, I noticed that myself. "Wow! Andy's been gone for a long time. Nice that everyone is jumping back on board."

Anyway... Last night marked 1 year since the tube came out.

Oh! Wow! Didn't know that. Time flies.

Actually, going back to last year, his g-tube didn’t heal correctly and he did have to have surgery last fall to correct that. They also found another hole in his diaphragm around that same time. It could be due to the patch not being attached well or it could be a hole in the patch. They aren’t sure. Originally, they were going to repair that when he was in surgery to repair the g-tube site. Instead, they decided to let him grow more first. He wasn’t showing any signs of intestinal blockage and they wanted him to grow and give them more room to repair it and maybe more material to work with because the hole is very close to the esophagus and aorta so they need as much room to maneuver as they can get. So even more than normal, we’ve been keeping a close eye on him for any kind of abnormal digestive symptoms from him for the past year.

I didn't know all of those details, either. Thanks for sharing.

Basically, the result of his issues is that reflux is a bit of a problem and we have to constantly watch for any signs digestive problems. Has he pooped today? How long has it been since he did? What did it look like? These are just day to day concerns. We also are very much in tune with subtle behavior changes or irrational behavior that might indicate an issue with the shunt.

Yeah, I can relate. One of our DDs had a medical issue as well. Not as serious as LG's, but we had to constantly watch her anytime she got a cold or had a bit of fever.

And of course, what better to mess with your natural food intake/digestion and irritable behavior than a week at Disney World?

I didn't think of that, but of course.

 

[Newsies]

Thank you for sharing your family's CDH journey with us. Sending love, light, and hope all the way from NJ

After a good night’s sleep, we woke up bright and early, excited to begin our fun!

Yay!!!

I was pushing the stroller toward the boat in what felt like the running of the bulls.

I am mindful of my stroller. I leave room in front of it to keep from clipping heels.

All I’m gonna say is that if you see that open space and care to make it your space, I’m not going to worry about YOUR heels.

I had a lady cut right in front of me just before we made it to the choke point at the gate leading to the boat. She pretty much jumped over R to get in front of my stroller.

And she was carrying a baby. Then she turned around and started yelling for her mom who attempted to do the same thing and squeeze between the gate and the stroller.

I was sure she was going to end up sitting in the stroller.

I won’t lie though. I knew what was happening and saw it coming.

Part of the reason she almost ended up sitting in the stroller is because I sped up to close the gap.

Ugh, this is the worst type of person!

The worst part about going to Disney World has always been the other people.

We waited about 10 minutes to board. I’m not really sure why, but when we made it to the load station, I told the CM there were 5 of us. For some reason she sent me and R to a spot in the middle of the train and DW, L and B to the front where they’d have to wait for the next one. We didn’t even all get to ride together.

That's so annoying and so completely far away from boarding protocol that I don't even know where to begin with this one. But I'm glad R liked it!

We’d drained our drinks before riding the speedway, so after we got off I headed into Cosmic Rays to make use of the newly installed water fountains with the bottle fill station. I wish they had more of those around, it’s quicker and easier than even asking for a cup... only downside is you can’t get ice from them.

Thank you for this!!! I'm glad you found the fill stations convenient. I was debating whether or not to bring my s'well to the parks this year, and I think I will, since the new stations are getting good reviews!

We started walking into the FP queue. I’m struggling to explain it, but when you enter the line you go down to a low spot and then go up a ramp... well, at the low point, we came to a stop. The FP line was backed up that far. Standby people just kept walking past. People in the FP line started questioning if something got screwed up and we were somehow in the wrong line. We ended up waiting about 20 minutes to ride. But as we’d find out, we were in fact in the FP line. We eventually caught up with those standby people that passed us. All the switchbacks on the left side were full of standby riders and FP was going to the right with none of the switchbacks open.

SM FP+ can get REALLY bad. I'm sorry you went through that!

As you can see, at this point R was in a pretty good while we were hanging around waiting.

He is such a little munchkin!!!

Sounds like there were some snafus at Magic Kingdom that morning, but you guys made the best of it! I can't wait to read more!

 

[pkondz]

After a good night’s sleep,

No sleep like a Disney sleep.

We'd be carrying a backpack that had some snacks, wipes, diapers, etc that we’d keep close by.

Sure. I've had the sh... uh... stuffing scared out of me to on a good coaster. Good planning. Bring some diapers for the kids, too?

I didn’t realize the TTC was undergoing so much construction that the trams weren’t going all the way in.

I hadn't heard that, having always used busses.

We hopped on the tram, rolled a few hundred feet towards the TTC and then stopped to get off. It saved us SOME walking.

it seemed like they were only running 2 of the boats

I thought there were only 2 boats. Do you know how many there are?

All I’m gonna say is that if you see that open space and care to make it your space, I’m not going to worry about YOUR heels.

Good plans. Maybe put pointy things on the front too.

I had a lady cut right in front of me just before we made it to the choke point at the gate leading to the boat. She pretty much jumped over R to get in front of my stroller.

And she was carrying a baby. Then she turned around and started yelling for her mom who attempted to do the same thing and squeeze between the gate and the stroller.

Wow. Wonder if she would've been very understanding if you'd taken her legs out from under her while she was holding a baby.

Part of the reason she almost ended up sitting in the stroller is because I sped up to close the gap.



Are we having a Magical Day yet???

The worst part about going to Disney World has always been the other people.

And yet... and yet... it can also be one of the best parts.

Did anybody take a picture of the castle that morning? Of course not!

"You're in charge of photos." "No you're doing that!"

So here is where my first trip planning fail came into play. I didn’t take Early Morning Magic into account.

Whoops! Rookie mistake, dude!

Our plan was to rope drop Peter Pan.

We did.

We also waited 35 minutes.

Well, that's not bad for PP, actually. Even for that time of day.

R was with me. By the time we passed the Mermaid Lagoon, he was screaming for Mommy.

Good times.

Oh dear.

Our original plan was to visit the Hundred Acre Woods next, but we made a judgement call to forego dark rides for a while.

Gee, I wonder why?

ahem

He was either going to love it or we were really going to go all out and traumatize him!

Let's go with traumatize! Make your mark!

Sorry for the shaky video. I was trying to hold him, keep an eye on him in case he got scared and still hold my phone.

I see a pretty big smile, there.

It was hot. Did I mention it was mid-July?

Oy. There's a reason I try not to go then.
Of course I understand school and other commitments, but.. HOT!

We’d drained our drinks before riding the speedway, so after we got off I headed into Cosmic Rays to make use of the newly installed water fountains with the bottle fill station. I wish they had more of those around, it’s quicker and easier than even asking for a cup... only downside is you can’t get ice from them.

I don't carry water bottles, because I tend to only like flavoured water (especially with carbonation and a Coke label on the can)
But I can see how this would be a really good addition.

Under the Sea ended up having a 15 minute wait. Honestly the longest line I’ve ever waited in for that ride!

Really! I've never seen it longer than a walk on.

I was still nervous about the dark ride aspect after our ride on Peter Pan and was afraid Ursula would freak R out.



Being the world’s best dad and husband that I am, I handed him to DW and said he’s probably going to want to ride with you!

The kids, R included, ended up enjoying the ride.

Good!

We started walking into the FP queue. I’m struggling to explain it, but when you enter the line you go down to a low spot and then go up a ramp... well, at the low point, we came to a stop. The FP line was backed up that far.

Yeah, I know exactly where you mean. That's pretty backed up for FP.

We eventually caught up with those standby people that passed us. All the switchbacks on the left side were full of standby riders and FP was going to the right with none of the switchbacks open.

Whereupon you snubbed your nose at them?

Tell me you did.

I love Space Mountain. Or I should say I used to love Space Mountain.

This time, it hurt.

Yeah... I found the standby line track was smoother (much smoother) than the FP line track.
But I'm not waiting an hour in line for a smoother ride.

Frozen drinks seemed to be a little hard on those paper straws

Yeah...
Here at 7-11, they have biodegradable straws that I can't tell the difference from regular plastic straws.

This is also when he discovered a new hobby. Chasing birds. I think he thought it was the coolest thing ever that birds would land within a few feet of him to pick up popcorn off the ground. And apparently he thought he wanted to catch one.

 

[MeghanEmily]

Thanks for posting your R summary/update. It helped fill in a few gaps for me. It's amazing to see him doing so well, and looking so grown-up and happy at Disney! I'm sure it's still very stressful having to always be on guard and wait for potential medical things to come up, but I'm so pleased to see how far R has come so far.

The worst part about going to Disney World has always been the other people.

YES.

Oh my goodness, I know the exact feeling of being in a crowd with people cutting in, and the internally-brewing rage that accompanies being around frustrating other people at Disney! Kids being difficult at Disney? That doesn't bother me. But adults? They know better.

If only we could go to Disney without all the other people there.

Awesome! They all look so big!!

Our plan was to rope drop Peter Pan.

We did.

We also waited 35 minutes.

Not really the start we wanted...

Uh oh! That's unfortunate! The EMH are an easy thing to miss when you're planning, but it seems like it definitely added to your wait time this day.

Turns out not everyone likes it.



R was with me. By the time we passed the Mermaid Lagoon, he was screaming for Mommy.

Oh no! Poor R! And poor Daddy!

Our original plan was to visit the Hundred Acre Woods next, but we made a judgement call to forego dark rides for a while.

Possibly a good call.

She’d gotten him a frozen drink to help cool off and keep him occupied. We quickly learned a valuable lesson about paper straws, frozen drinks, and a toddler.

Just grab a handful of straws.

Frozen drinks seemed to be a little hard on those paper straws and on top of that, he tends to chew straws.

Ooh, I hadn't even thought about this! I was anticipating the paper straws for sodas and things, but I hadn't thought about how it would impact frozen drinks. Making a note to pack a few reusable plastic/metal straws from home. I'm all for limiting plastic waste, but I can see how this could be tricky with little ones!

 

[TNGirlwCamera]

Aw I love R's sweet baby face in the hospital pictures. I hope he continues to do well.

lol at the stroller incident, I would have sped up too.

 

[amazingact21]

I am mindful of my stroller. I leave room in front of it to keep from clipping heels.

All I’m gonna say is that if you see that open space and care to make it your space, I’m not going to worry about YOUR heels.

This must be a dad thing, because you sound JUST LIKE ALEX. I thought I was listening to my husband explain his stroller drama all over again.
I will admit, though, I think guests have become worse about hopping in front of strollers. Gotta get one family ahead, you know...

Here’s where the lack of pictures comes into play. Did anybody take a picture of the castle that morning? Of course not!

You guys were excited to see the castle again. It's understandable. And you got one of all three kids in the hub, that totally counts.

I was still nervous about the dark ride aspect after our ride on Peter Pan and was afraid Ursula would freak R out.

Being the world’s best dad and husband that I am, I handed him to DW and said he’s probably going to want to ride with you!

Well, after his reaction on Peter Pan and him screaming for Mom, it's understandable.

I expected more walk on opportunities during that first hour like we’ve had on past trips, but obviously the early morning magic and 7DMT being closed really inflated everything in Fantasyland.

I think those days are over. Maybe it's because of morning magic or because the welcome show is in the park or just more guests are aware of that rope drop opening plan, but either way I don't think that first hour is empty in the parks anymore.

 

[Terra Nova guy]

I remember you writing about the medical issues with R before, but seeing that picture of the hospital with all the machines really puts it in perspective. Glad to hear that he is doing fairly well.

started walking into the FP queue. I’m struggling to explain it, but when you enter the line you go down to a low spot and then go up a ramp... well, at the low point, we came to a stop. The FP line was backed up that far. Standby people just kept walking past. People in the FP line started questioning if something got screwed up and we were somehow in the wrong line. We ended up waiting about 20 minutes to ride. But as we’d find out, we were in fact in the FP line. We eventually caught up with those standby people that passed us. All the switchbacks on the left side were full of standby riders and FP was going to the right with none of the switchbacks open.

That exact same thing happened to me last year. At the time I was convinced something had gone wrong. But I guess that’s just how they run things. Seems a bit strange though.

 

[Stasieki]

We may be taking our first summer trip next summer. Looking forward to hearing how wait times, heat, etc is for you. I wonder if free dining ticked up the crowds this year since I don't ever recall them offering it other summers?

 

[Steppesister]

We made it that far and I looked around the car and everyone was sleeping.

Hammer down.

Traveling SCORE!

We stopped later on for lunch at the Cracker Barrel in Lake City, FL. I don’t think we made more than 1 or maybe 2 other restroom stops the whole drive.

Is this even possible?!

I always want to be out seeing or doing things and it is hard to make myself go to bed!

I know; the struggle is real.

The hotel had an Applebees attached to it so we went there for dinner, again, to avoid driving anywhere.

While we were waiting, we were approached by a hotel employee from what appeared to be their concierge desk, trying to sell us park tickets. I told her we already had what we needed and weren’t interested, thank you.



Apparently, she works on some kind of commission.

She went on telling us we should sell her our tickets and was telling us she could get us a better price... I don’t know, I was done talking to her or listening when I told her we had our tickets and weren’t interested. She went on this hard sell trying to get us to do something and after telling her “No, thanks” a few times, I just turned my back and walked away.

UGH, that sounds terrible. Such a turn off.

So even more than normal, we’ve been keeping a close eye on him for any kind of abnormal digestive symptoms from him for the past year.

You guys are doing such a labor of love. Good work, guys!

So we feel like we’re on borrowed time before they’ll have to change out his shunt valve or tubing.

I didn't know this part! But it sounds like you have a good handle on knowing what to look for.

Basically, the result of his issues is that reflux is a bit of a problem and we have to constantly watch for any signs digestive problems. Has he pooped today? How long has it been since he did? What did it look like? These are just day to day concerns. We also are very much in tune with subtle behavior changes or irrational behavior that might indicate an issue with the shunt.

I know how hard it must be to be constantly vigilant like that.

And of course, what better to mess with your natural food intake/digestion and irritable behavior than a week at Disney World?

OH God how I know this.

They were heavily invested in caring for him, and for us.

I remember that. Such a stellar team you had!

Those of you who are in this field, I just want to let you know I appreciate what you do. I know it isn’t an easy job, but you’re definitely in a position to make a real difference in someone’s life!

Awww, thanks, Andy. That means the world to us nurses!

I got up and prepared the park bags.

I super hate this chore, and it's always a tough call between doing it at night when you're dead tired or worse, in the morning when you're raring to go!

I was sure she was going to end up sitting in the stroller.

I won’t lie though. I knew what was happening and saw it coming.

Part of the reason she almost ended up sitting in the stroller is because I sped up to close the gap.



Are we having a Magical Day yet???

The worst part about going to Disney World has always been the other people.

Oopsies. Sorry about your ankle I just aimed at.

He was either going to love it or we were really going to go all out and traumatize him!

YAY for another parenting win!

but he did say it was fun!

PHew!

Our morning had gone ok. I’ll admit, it seemed like we were seeing longer lines than we’d expected based on past experience and seeing how low the crowds were “supposed” to be that week. I expected more walk on opportunities during that first hour like we’ve had on past trips, but obviously the early morning magic and 7DMT being closed really inflated everything in Fantasyland.

Nothing you could have prevented or known.... keep on truckin'.

I love Space Mountain. Or I should say I used to love Space Mountain.

This time, it hurt.

Yeah, been hurting for a while now. I'll ride in (reluctantly) with my kiddos in a few weeks, but will probably regret it.

 

[franandaj]

We added them to the 3 ADRs we wanted to and it didn’t impact our plans or the times in any significant way.

That's great!

We grabbed breakfast from McDonalds, fueled up and sailed right through Atlanta at around 8 am on a Saturday morning.

We stopped later on for lunch at the Cracker Barrel in Lake City, FL. I don’t think we made more than 1 or maybe 2 other restroom stops the whole drive.

Sounds like a very smooth trip!

For a 900+ mile drive, everything really went as well as it could have.

Sounds like it!

Truthfully, I need to get a full night's sleep after driving all night and when we stay on Disney property that first night, I always want to be out seeing or doing things and it is hard to make myself go to bed!

I can totally relate to that. Well not the 900 mile drive. I would have to stop and sleep on a drive that long. I don't think I myself have ever driven that long. Ever.

The hotel had an Applebees attached to it so we went there for dinner, again, to avoid driving anywhere.

That sounds convenient. Until this....

They were WAY understaffed.

Ugh.

It just left a bad taste in my mouth about that place, honestly. The room was nice, so no complaints there, but I would certainly not recommend this hotel, nor would I stay there again if I were paying for a room. Especially with what else is available in the area for comparable cost.

That's not at all a glowing recommendation.

I know some have said they’ve read past TRs and maybe didn’t comment, but just in case I want to give some background on this guy.

Thanks for that! While I lived through your struggles and was there to listen to the tales as they unwound, it was nice to hear it in a synopsis form which put it better in perspective just how hard he struggled and how far he has come.

Part of the reason she almost ended up sitting in the stroller is because I sped up to close the gap.



Are we having a Magical Day yet???

Yeah, they do the exact same thing with scooters, except those can plow them down more easily.

We waited about 10 minutes to board. I’m not really sure why, but when we made it to the load station, I told the CM there were 5 of us. For some reason she sent me and R to a spot in the middle of the train and DW, L and B to the front where they’d have to wait for the next one. We didn’t even all get to ride together.

That bites.

Under the Sea ended up having a 15 minute wait. Honestly the longest line I’ve ever waited in for that ride!

And the one in DCA will often have 45 minute long lines. Go figure.

This time, it hurt. I don’t know what it was, but it just felt really rough.

I haven't been on MK's Space Mtn in years. The last time I rode, it was just too jerky for my tastes and I couldn't handle it. I much prefer DLs.

Frozen drinks seemed to be a little hard on those paper straws and on top of that, he tends to chew straws. I think we went through about 8 of them on that drink alone. In any case, it was hydration, it cooled him off and he was happy.

I'll remember to pack our reusable straws on the next trip....

 

[lvcourtneyy]

When DW was 20 weeks pregnant, we found out in an ultrasound that R had a hole in his diaphragm. It is called Congenital Diaphragmatic Hernia (CDH). They basically said that in addition to the obvious problems, the biggest issue is that he would not have fully formed lungs because they form later in the developmental process and the abdominal organs that were spilling into his chest cavity would crowd them out. They said he had a 50% survival rate.

Wow. Thankfully we have the technology to discover these things so early on now but wow that must've been a lot to process while she was pregnant.

How overwhelming this must've been. What a little fighter you guys have!

2 months old... first time we got to see him without tubes or tape on his face

hi cutie!

Anyway... Last night marked 1 year since the tube came out.

Awesome!!

One of them worked at night and she was there the first night when he was born and the decision was made that he had to go on ECMO. She actually ended up picking up some extra shifts to come in and rock with him. She made a sign to help her co-workers better care for him.

That's amazing!

Thank you for sharing R's story. I'm sure it couldn't have been easy for you to relive all the hard moments by typing them out.

Those of you who are in this field, I just want to let you know I appreciate what you do. I know it isn’t an easy job, but you’re definitely in a position to make a real difference in someone’s life!

Thanks for this- the meaning of the job gets lost sometimes in the long, hard shifts.

 

[lvcourtneyy]

We hopped on the tram, rolled a few hundred feet towards the TTC and then stopped to get off. It saved us SOME walking.

Wow what's the point?

I had a lady cut right in front of me just before we made it to the choke point at the gate leading to the boat. She pretty much jumped over R to get in front of my stroller.

And she was carrying a baby. Then she turned around and started yelling for her mom who attempted to do the same thing and squeeze between the gate and the stroller.

What on earth is wrong with people!

The worst part about going to Disney World has always been the other people.

Yup agreed!

He was either going to love it or we were really going to go all out and traumatize him!

only one way to find out!

or some reason she sent me and R to a spot in the middle of the train and DW, L and B to the front where they’d have to wait for the next one.

Logic has no place here.

If you get motion sick, you might want to sit it out, but he did say it was fun!

yay!

Being the world’s best dad and husband that I am, I handed him to DW and said he’s probably going to want to ride with you!

This time, it hurt. I don’t know what it was, but it just felt really rough.

Yup the older I get, the more I feel this way lol.

 

[SimplyGoofy]

Thank you so much for the story about R! I already knew much of the background, but I enjoyed seeing the pictures and seeing how far he's come. What an amazing kid!

All I’m gonna say is that if you see that open space and care to make it your space, I’m not going to worry about YOUR heels.

I'm so nervous about having a stroller at Disney World! I will do my best to not run into other people, but I'm with you - if you jump in the way of the obvious stroller, good luck to you!

Are we having a Magical Day yet???

The worst part about going to Disney World has always been the other people.

TRUTH. Many people at Disney are wonderful folks, but there are always a few bad apples in the bunch. I know everyone has their grumpy moments on vacation but being a jerk to other people is out of line.

We also waited 35 minutes.

Good grief! The EMM must really mess with the wait times - I hadn't thought of that! They were doing EMM back in 2015 and 2016, but I think it's much more popular now.

If you get motion sick, you might want to sit it out, but he did say it was fun!

I'm so thrilled that R enjoyed his first ride on a rollercoaster! Perhaps he'll be your RNRC buddy in the years to come!

Fly with elephants, of course!

Your daughter looks SO HAPPY in this picture!

We’d drained our drinks before riding the speedway, so after we got off I headed into Cosmic Rays to make use of the newly installed water fountains with the bottle fill station.

Good to know! G and I brought our refillable water bottles on our last vacation (to Glacier National Park) and really liked having them available. Hopefully they'll put in even more refill stations!

The FP line was backed up that far. Standby people just kept walking past. People in the FP line started questioning if something got screwed up and we were somehow in the wrong line. We ended up waiting about 20 minutes to ride.

Good grief! I've definiately been in a long FP line at Space Mountain before, but never had to wait so far back. I'm amazed it was only a 20 minute wait! We also had a bit of chatter of whether we were in the correct line!

It's too bad that the lines seemed so crazy. I know it's busier in the middle of summer than other times of the year, but it's especially disappointing that the FP lines were not "fast" as advertised. They must be distributing too many passes!

Despite the longer-than-expected lines, it seems like you accomplished many things and had fun your first morning!

As you can see, at this point R was in a pretty good while we were hanging around waiting.

What a happy boy! I'm thrilled that your first morning at the park went so well for R!

 

[luvpoohandcompany]

Finally managed to get some dis-time and I'm all caught up with your report
You've gotten off to a great start. Those smiles on your kids faces at the hub are just priceless
LG has come such a long way and really is a wee miracle. Hoping his health continues to improve

 

[vamassey1]

Anyway... Last night marked 1 year since the tube came out.

He's a miracle baby and has come so far.

Ok, I think I’m done with the trams.

We only drove to MK 1 time in all our trips. We were parked real close & didn't have to take the tram but I don't think it's something I want to do again.

All I’m gonna say is that if you see that open space and care to make it your space, I’m not going to worry about YOUR heels.

Preach!

Are we having a Magical Day yet???

I know it's going to get better.

The worst part about going to Disney World has always been the other people.

Yep, I'll agree with that.

We stopped for the first of many, many restroom breaks at the town square before rounding the corner and seeing the castle!

We have to stop for lots of bathroom breaks and I'll admit it's usually due to me.

But we did get some in the hub. We had time to kill and a show to watch before the rope dropped.

Everyone looks happy.

Our plan was to rope drop Peter Pan.

Gotta have a FP or rope drop it. It's my favorite Fantasyland ride.

Turns out not everyone likes it.

Oh noooooo! I'm worried about JP on this too.

Our original plan was to visit the Hundred Acre Woods next, but we made a judgement call to forego dark rides for a while.

Good call. We traumatized Danielle on her first trip. It's amazing how many dark rides there are for little kids.

but he did say it was fun!

That's a win! Maybe he's a thrill- seeker.

Everyone enjoyed Dumbo.

Another win!

The kids, R included, ended up enjoying the ride. He liked the colors and music and even the darker part didn’t scare him.

You're on a roll here.

This time, it hurt. I don’t know what it was, but it just felt really rough.

I quite riding it several trips ago. Of course I'm a good bit older than you. The last time I rode it my head hurt so bad I had to sit our riding BTMRR at night, my favorite time to ride.

We quickly learned a valuable lesson about paper straws, frozen drinks, and a toddler.

I'm worried about this too. I really like straws too. I have picked up some reusable straws I guess we'll see if I really use them.

As you can see, at this point R was in a pretty good while we were hanging around waiting.

Awwww he looks like he's having a great time.

 

[rdkeim]

Thanks for the recap on your son's journey. You must look back and realize just how far he's come. Your MK morning is going pretty good! Other than PP, R is being pretty brave. Hope your ADR and the rest of the day goes well!

 

[afwdwfan]

I haven't read your trip update yet, but I wanted to say to this...♡♡♡♡♡♡♡♡♡♡♡♡.

I have had two medically needy (that's my own term, and I don't know where or when or why I started using it, but i apologize if it's weird) children. My oldest daughter had cancer at 3 & 9, and she almost went on the ECMO machine at one point but that never materialized. And my youngest was born with a congenital heart condition.

So all I'm saying is I get it, and I'm so glad your son is doing pretty well. I am sorry for the stress of just waiting for medical things you know are coming. It's very nerve wracking and stressful. Hugs to you and your family.

Actually, that term makes a lot of sense and I totally get it! Thank you for the kindness and compassion... I know you've clearly been through the ringer with everything you've faced. I just wanted to share a little bit because every once in a while I just think about him and what he's been through, and especially those days when I'm getting frustrated with his stubbornness... but that kid is clearly a fighter. It's always something that we have to think about on our trips... watching for signs of any problems and worrying about where to find the closest children's hospital.

Those darn other people. I feel you!

It would be so much nicer without them!

Overall, it does sound like a fairly productive first day.

Your little guy has some a long way; I'm sorry that it is still so challenging for you all. Always sending your family positive vibes!

Thank you!

First day sounds like it was off to a good start! You got a decent amount of rides done, even with the longer than expected lines!

It wasn't bad. We did get a lot of ground covered, but I was shocked at how bad some of those lines were.

Ah sorry you've been turned off by SM

I'll ride it again. I still like it, but without a refurb, it might just be a one and done ride for me now.

I was aware of most of what you just wrote, but not all of it. Glad I didn't skip it. (I wouldn't have anyways.)

We did keep most of it close to the vest. I know I shared some, but honestly I don't even remember what details.

Actually, I noticed that myself. "Wow! Andy's been gone for a long time. Nice that everyone is jumping back on board."

As I've said, I missed everyone and it's just a really good feeling to have it work both ways, you know?

Oh! Wow! Didn't know that. Time flies.

I kind of lost track. I was thinking about it a couple of weeks ago when I was trying to remember when his last surgery was.

I didn't know all of those details, either. Thanks for sharing.

Yeah, I can relate. One of our DDs had a medical issue as well. Not as serious as LG's, but we had to constantly watch her anytime she got a cold or had a bit of fever.

Oh yeah... with his slow lung development/smaller lungs, any time he coughs we're on alert. A common cold means immediate nebulizer treatments, and if it goes more than a day or so we're at the dr office.

I didn't think of that, but of course.

Heat, odd diet, lack of sleep. You know. All good things.