Give Lucas the World Day 5

For some reason I woke up at 4:45 in the morning yesterday. Lucas had a good sleep, and stayed in bed with Dad. I decided to get up, write Day 4’s blog post, cleaned up this villa, took out the trash,  and did some laundry. I think I was a little bit sad, and frustrated about the night before. He just refuses his meds here. While it’s not ideal, the last thing I want to do is ruin his once in a lifetime vacation. The shots we can force into him. Oral medications are impossible to force. He will either throw up repeatedly, or bite, kick, scratch, and completely meltdown. Maybe I was feeling guilt for being such a Grinch that night. I was just trying to put my Dr. Mom pants on, and give him his medication! The night was so bad that I didn’t even want to really discuss what had happened. However I think I will explain it a little bit because this is why we are here, he is a sick kid, and our rough night had a major impact on our day yesterday. So let’s dive into it a little bit more.

Lucas takes 3 medications to help his body fight and prevent infections. He takes 2 big tablets of Bactrim every day, which is a heavy antibiotic. He’s also on a very heavy, and possibly harmful drug called Voriconazole, it’s a liquid form anti fungal medication. Normally I crush up the 2 Bactrim tablets, and mix it into the Voriconazole liquid suspension, along with some yummy cherry syrup. At night he just usually has the Vori with some crushed benadryl, and cherry syrup. He needs the benadryl because of his insomnia, and for his allergies. We can’t change how we give it to him. His meds cannot be mixed into foods, or drinks. This is because he can taste it, and will throw up. His sensory disorder is quite a challenge each day, especially with meds. He’s always been a bad medicine taker, even as a 6 month old with Advil. We’ve tried everything. This is the only thing that has ever worked for us, but the trick is that he has to be accepting. He needs to know it’s medicine, and he needs to be willing to take it. Sometimes he takes it without any issues at all. Here, he will not take it. He keeps telling us he will take it at home home.

So I tried to pin him down twice, and force it down his trap. Well, that was an awful end to a beautiful day. Let me emphasize how miserable we all were watching Lucas hypriventilate on the floor after the biggest meltdown of all meltdowns. He trashed our whole entire villa, he ran around screaming, he peed all over the floor, and he wouldn’t stop biting anything he could get his hands on. Including me. I think that’s enough of an explanation. It was bad, and his mood dropped significantly, as did ours. So yesterday when I woke up, I felt very solemn. My husband shared the same emotions, and we decided that we aren’t going to force it here, as this should be a happy trip. We talked to his doctors, and they too agree that it sounds very difficult, and they are hoping the Autism center can help us next month with more than just the meds. He needs it.

I decided to have breakfast alone to avoid another orange juice shower. Chris played with Lucas while I ate in peace, and called Make A Wish to talk about the potential storm, and cancelled flights for tomorrow’s return home. I also got to talk to my dad, and he wished us a Happy Anniversary. Which was nice. Lucas was also able to head over to the Town Hall here at GKTW and meet Goofy, Mickey (who signed his special GKTW Mickey toy), Pluto, and Belle! He would NOT take that sweatshirt off. It was getting warm too! Silly boy.

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We finally got cleaned up, into the van, and stopped at Dunkin’s for him. He ate something. Finally. He is just way too picky with his food. Whatever.

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Walking back into the park, he did not have that skip his his step that he had the day before. I tried to put some sun lotion on his face, and he freaked out. He did not want to pose for pictures. He just kept his head down, oh and he fell down multiple times, and cried hysterically. This is when I decided to find First Aid, as soon as we got inside the Island of Adventure. We needed a quiet place to regroup, and calm down. Thankfully afterwards he perked up a little bit. Then I spoke to guest services, and was able to schedule a private meet and greet with the Dr. Seuss characters. Universal Studios does this for Make A Wish, Give Kids the World kiddos. We had an hour to kill so we decided to head over through the Marvel area. There were no superheroes out, and Lucas couldn’t really go on any of the rides in that area. He fell again, so I had to put him in his stroller, which he hates, but he got in it. We kept telling him we were going to go meet The Cat in the Hat, and he wanted to meet him, but he didn’t want to be stuck in that damn stroller. Chris was hungry, so I stopped at the hot dog stand, and told Rachel, and Chris that I’d catch up with them. I sent them walking to keep the kids happy, and then I saw it.

There was a man waving a sign that said MEET SPIDERMAN. I quickly texted Chris and Rachel and told them to reverse double skate. I ran up ahead to meet up with them, and bring them back to see SpiderMan, and then I saw Captain America! We brought Lucas over to him, and they had us wait just a short moment, and then put us right next to him, in front of the long line! Lucas, Rachel, and Chris were all so happy! They sure love meeting characters. Lucas even got to hold Captain America’s shield! They are so good with Lucas. So kind, and they give him more time than they gave anyone else.

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Once we headed back towards Spidey, we got up to the photographer’s desk and gave her our pass, and once again we cut right in front of the line! We let our little dude out of his stroller, and he ran right up to Spider Man, and we told him that Lucas was a Wish kid. SpiderMan and Lucas had quite the conversation. Lucas was telling him everything, and would not turn around for the photo. It was so cute!

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Then we finally got him to turn around, and shine that bright smile that warms our hearts. We were so glad to see him happier again. Thank you Spider-Man!

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After Spider-Man, of course he didn’t want to get back into the stroller. We had to quickly force him in, and get him out of there. He wanted a Spider-Man toy, and that’s when we realized that we left our Make A Wish debit card in the van. My dear husband ran all the way out of the park after scoffing down that horribly good hot dog, and grabbed the card and then had to run all the way back. Poor guy. With is neurological muscle disorder, this set him back a little bit for the rest of the day, but he was a good sport! While Rachel and I were pushing the strollers, we met some super awesome and incredibly tall genies! They were SO cute with him, and I must mention here that when we traveled back hours later, they remembered his name. My husband thinks that Lucas is a hard kid to forget.

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As you can see, Lucas was rubbing his eyes. He was miserable again because the sun lotion, and the sun both bothered him for quite a long time. We made it back to Seuss Landing, and Chris caught up with us there. We changed Joanna, and fed her while we waited for the Dr. Seuss show. Then we realized we were in the wrong spot. The show was moved. So we missed the first 3/4 of their musical dancing show, but what he saw… He loved. So that was cool. After they did their show, they took us back (SAM TOOK LUCAS) into a super private area and gave us like 20 minutes of private attention. It was so mesmerizing for Lucas, and Joanna. Rachel totally enjoyed it too. Chris and I shed a few happy tears. After having an awful start to our Anniversary, we were able to turn things around and enjoy the rest of the day. Lucas was much happier after this meet and greet. It was EPIC.

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That woman is a saint. Her name is Amy. She works with the Seuss cast, and she turned Lucas’ whole day around. I wanted to put her in my pocket, and take her home to CT with us. She is absolutely AMAZING. She was talking to Lucas, and telling him about the Jurassic Park area, and how cool it was. Somehow they were talking about a Volcano, and that turned into a majorly funny repetitive bout of them yelling, “VOLCANO” back and forth with each other. She also tried to eat Joanna’s toes, but Joey was more interested in the Lorax. She would NOT stop staring, touching, and smiling at him. We must thank Amy and the cast over and over again. Not sure how to reach them, but I shall try! They made our whole trip. I can’t even believe the amount of time they spent with us.

Then we took Lucas through Jurassic park, and he wasn’t as interested as we thought he would be. However, it was still pretty cool to see the raptor! He did buy a little raptor toy. Which he instantly put into his mouth, and then cried because his toy was too loud. You know… The park wasn’t too loud, but that toy was. Sigh.

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At this point, all he wanted to do was go on the ET ride. So we made our way through the Harry Potter train queue with ease this time, and we found Bruce!!!!!!

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“Hey, where did Mom go?” HAHA… The shark is still there. My favorite thing in the world!

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Lucas went on the Twirl & Hurl a few times, and we even took Joey on it too! She liked it.

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She also loved the fact that Lucas wanted to ride ET five times, so she could have a bottle and some food! We stayed in ET until the park closed. Our day was almost a disaster, but those Seuss characters really helped to make the day a special and memorable one for sure! Lucas picked up another ET, and then fell asleep in his stroller on the way to the van.

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I’m happy to report that last night was a good night. When we got back home we saw that Santa had came and dropped off some gifts for the kids. We had missed the Winter Wonderland special here at our village, but that was okay because of how happy he was to ride ET, and he was thrilled that ET said his name at the end!! We had dinner, and got both kids into bed. Everyone slept well, and Lucas went to bed happy. That’s all I could really ask for. We just want him to be happy. Healthy, and happy.

3 thoughts on “Give Lucas the World Day 5

  1. Oh Linzy u are good parents and I know it can take a toll mentally when family especially kids are hurting and we can’t help them feel better. He knows u love him. I miss u all terribly. Can’t wait until u come home to hear ur stories. Give Lucas kisses for me I miss my lil buddy. Happy Anniversary! Xo

  2. I LOVE these photos although seeing them thru all these tears is almost impossible!! Thank you for sharing some of what Lucas has to go through. Of course it is also what all of you have to go through. Is Lucas going to be willing to even come home???? I know I wouldnt be.

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