Day 738 - On the Road to Miami 🚗 🛣️ & Embarkation Day! 🚢 ⚓

Saturday, January 7th, 2023

So Mom started the day off with only 2 hours of sleep, but we were packed and ready to go! Remember only 6 days ago we were pulling another all nighter in the ER?! Do Moms ever "catch up" on sleep?

We needed to leave by 7am in order to allow enough time for traffic to Miami. We were supposed to arrive around 1:30pm. Packing the car takes about an hour and this time Dad had a challenge of fitting 3 suitcases with the oxygen concentrator and stroller into our tiny SUV. It was definitely a game of Tetris! We left James in his pajamas as he was still sleeping and would change him once we got to the port. Of course as soon as we got in the car, he woke up! We had a very long drive to Miami. Most people get there the day before and stay in a hotel to make sure that they don't miss the ship. We would have definitely done that if we were flying but since we were in the same state we figured we could make it work. We arrived on time and dropped off our checked baggage at the curb with our luggage tags. We paid a gajillion dollars 💰 for parking at the Port of Miami 🚢 and then had to figure out how we were going to transport all of our "carry-ons" drop 3 floors, across the street, and through the terminal. 🤔 For us "carry-ons" included all medical equipment which was his ventilator, an oxygen concentrator with pediatric flowmeter attached, an oxygen tank, two suction machines, two pulse oximeters, a feeding pump, Farrell bag, a bag full of labeled medication, a bag full of charging cables for the equipment. Oh and a normal diaper bookbag with his not-so-normal emergency bag inside. Mom bungee corded the oxygen concentrator to the glider board on the stroller. It was delicately balanced! Dad had to wheel it pretty slow because with any big bump it would fall off and we didn't want to find out how much it would cost us.

Port security was nothing like we thought it would be. The guy was pretty funny and said, "Yo they got a whole hospital with them". They didn't give us a hard time at all and barely looked through our stuff. We think they just felt bad for how much we had to carry through with us. Lots of people staring! The guy checking things through the X-ray machine gave James $5 💵 when he found out it was his birthday recently. 😂

As we got on the ship Disney does something that no other ship does which is announce you as a family when boarding. It was one of those moments that feels like it would have been ruined with recording it. There were two long rows of cast members and staff clapping and greeting everyone walking on board. We immediately went to our room because we had so much stuff with us. And because it was so late in the day we knew the room would be ready!

Dad and James had about an hour nap before the muster drill. Thank goodness we didn't have to wear a life jackets for this because we were already the ones with the medical stroller taking up a lot of space on deck. We had about 45 minutes until dinner and decided to walk around the ship. We ended up on Deck 11 accidentally which is one of the main floors where everyone is at because of the pool area and buffet. It also happened to be the exact time of the show starting where Mickey, his friends, and the cast members we're going to sing and dance to welcome us on the ship as we sailed away. We thought we got a good spot but the ship was actually packed to capacity with 4,000 passengers. At that moment all 4,000 passengers wanted to see this same show around the pool area! As soon as they started with the loud music and people yelling James start a hysterically crying. One of the cast members noticed our situation and gave us a couple of suggestions on where else to go. We booked it out of there and went down to guest services to get some questions answered. Two the things that guest services were able to help us with was to keep our ice packs frozen in their special freezer and also provide us with an extension cord since you are not allowed to bring surge protectors, power strips, extensions cords on the ship. 

PSA

One of the things that Mom noticed in a lot of the Disney Facebook groups was that people are very much aware of the prohibited items list but try to sneak on things anyways. Well if everyone used power strips in their stateroom, plugging in a bunch of electronics, it would draw that extra electricity from the ship and could cause a power outage. Yes, that may be a small chance but what if your loved one was on a ventilator and requiring that electricity to stay alive? What chance are you going to take? So if you're going on a Disney cruise there's a reason they have strict rules about that. It would be great if people could think about others instead of themselves. And no, the medically complex should not have to just stay at home because someone doesn't want to follow the rules. Disney actually works with the Make a Wish Foundation to give children with critical illnesses the opportunity to experience something like this. Thanks for coming to my TED talk.

We were scheduled for our early 5:45pm dinner. You have the option between 5:45pm and 8:30pm. There is absolutely no way that James would make it through an 8:30pm dinner. Our dinner was located in the Animators Palette. What was really cool about that room is that there were pictures all over the walls that were animated sometimes, and sometimes they weren't. We made friends with the table next to us, and they were very friendly; two adults and two older girls. One of the neatest things about this room was that they had sea life swimming across it. At one point the turtle from Finding Nemo comes up to the screen and ask if everybody can hear him. He asks a few questions and eventually he picks someone out of the group, which was the girl at the table next to us. He is repeating her name so there must be microphones or something above each table. It was really neat and definitely some Disney magic to have a full conversation with animation! ✨

James did really well in this dining room because there was so much to look at all the time. Sometimes the sea life would stop and they would play games like Guess What This Is? And it would be fish slowly forming into a formation. So James was well entertained. The idea was that we would have him try some purees, soups, any liquids so we brought a bid and a feeding spoon with us. Of course it's always a little hard to explain to the wait staff that James is actually eating right now and he has a feeding tube. They consistently asked us what James would like to order from the menu. 🤦🏻‍♀️ There was also probably a little language  barrier. Immediately sitting down we need to remove the crayons, silverware, small bread plate, full cup of ice water, and menu all from his reach. When he was able to reach something he made sure to throw it pretty far. I know the man see next to him was getting sick of picking stuff up. So we learned to get all of this stuff out of his reach. We finished dinner around 7:30pm and we were pretty wiped because it had been a long and busy day of traveling plus Mom was running on zero hours. We did James' trach care on the corner of the bed which seemed to be the easiest. Dad actually did a lot of his night care to help Mom out. 

Our sleeping arrangement was interesting. We had a queen size bed with bed rail on one side for James. One of us would sleep in the bed with him and the other would sleep on the couch that flipped over onto a bed. The queen size bed was amazingly soft for Mom and the couch bed was amazingly hard for Dad. But we switched back and forth because the couch bed was also very very short for Dad. In the following days to come we will show you photos of the interior.

Today you'll notice that we were all wearing our matching Disney Cruise t-shirts. They were made by the amazing "Aunt" Megan. Aunt Robin also made us some very cool and personalized shirts and totally saved Mom a lot of time by making a lot of the stateroom door decor. If you're ever going to go on a Disney cruise just know that there are about a 100 Facebook groups covering everything from "how to cruise with a toddler", "Disney cruising ducks", and groups for your specific cruise dates. You'll also learn new words like fish extenders and pixie dusting. It is a whole separate world of cruising. Super helpful if you are type A. 🤣

Lastly, Dad took a stroll to fill up his water bottle and get the ice packs for the night and noticed the moon. 🌙 He came back to the room to get Mom's phone so he could take a few photos and video. He left his phone in Tampa so he would not be distracted.

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com