We've been going to Orlando each summer in August since 2004...Mom, Dad, my niece, and Mike and I. Once Jayden was born, he joined in on the fun. And this year was the best yet! But, of course, as with any vacation there is always The Good, The Bad, and The Ugly!
Let's start with the Good...
WE HAD FUN FUN FUN!! The drive to Orlando and back was AWESOME! Jayden was so well behaved that we hardly knew there was a 3 yr old in the truck. This was completely opposite of last year. Last year was AWFUL, but of course we had no idea what was truly going on with Jayden and were still fighting medical Drs to find out. This time around he watched his movies, got out at rest areas to use the restroom, and was just all around a great traveler. Once we got to the resort, Jayden had to have said "Wow" about 50 times. He was truly amazed and he showed that. We went to Universal Studios, Islands of Adventures, Magic Kingdom, Epcot, and Hollywood Studios. We also did a day at Blizzard Beach Water Park. Jayden met and took Pictures with Spiderman (and the other Marvel comics superheroes),Mickey and the Gang, and several other characters that he knows and loves. He is exactly 40 inches tall so he was able to ride on a few rides. His reactions were PRICELESS! On the Spiderman ride, I wish I could have had him on video. He was helping Spiderman to fight crime and had his jaw on the floor the entire time b/c he really thought he was in the scene. And we took him on a Jaws ride. We didn't think he knew anything about Jaws, but when we got to the attraction he pointed to the shark and said, "Jaws!!" Then we remembered that he watched Jaws at on of the gym's dive in movies. He has a superb memory. He was so into all of the action and he does this thing where when he gets shocked he shakes his head as if he's doing a double (or triple take) and holds his mouth open in shock. He had so many people laughing. The parks were very accommodating to Jayden's needs as well. We were given a red sticker to put on his stroller to allow us to use it as a wheelchair so we only took him out when we really needed to. For the most part, he was able to stay in the stroller and the park staff was very kind about it. This helped him alot b/c at one point (going to meet Mickey at Magic Kingdom) I didn't use the option b/c I thought he could handle the line since it was inside in the AC and within 10 minutes of waiting, he started hyperventilating. He still has the fear of large crowds and I'm sure the noise of all the people talking was overstimulating to him. After that, I decided to just use the pass to it's full advantage. Jayden was also accommodated at the food areas as well. One day he enjoyed a hot dog on a tapioca bun. Pure joy! This was truly his magical year!
Now how about the Bad... Of course, the seizures :( We definitely didn't expect to get through this trip without a single seizure. We actually went prepared for them. We had BOTH of his Diastat meds in case of a seizure lasting 5 minutes or longer. We had an ice pad for his stroller, two fans, and a stroller parasol. So many people commented on his get up, lol! We had ice packs in case he overheated, his noise reduction headsets in case he got overstimulated by the noise, his blanket for security, and lots and lots of water. We were also prepared to leave the parks at anytime for him b/c we knew that he'd been having issues with the heat/sun lately. However, his seizures all happened outside of the parks, in air conditioned areas. The 1st one was bright an early Sunday morning, before we even left the resort. Mike and I were packing his bag, my mom and dad were in their room, and Jayden was on the couch with my 13 yr old niece. He went from being a speed demon to sitting on the couch whining just like that. I never seem to panic when he does this, I have no idea why. I went and held him for a while and he was just acting sleepy so I figured he was just tired from the long day we had Saturday. I sat him on the couch and went to finish packing his bag. They were watching the Disney channel and I heard Jayden say "I'm scared". He says this before a seizure, but it still didn't register to me b/c I wasn't looking at him. I heard my niece say "You're not scared, this is a cartoon!". He kept whining saying he was scared and then he got quiet (I thought my niece picked him up) and then all of a sudden was a full on cry, as if he'd fell and hurt something. I went to get him and immediately knew he had a seizure. I didn't want to scare my niece so I just picked him up and carried him to our room where he immediately passed out. My mom came out after a few minutes and when she saw him she asked what happened but she already knew. I told her he had a seizure and my niece came running in very concerned. She said "He just started screaming, I didn't know it was a seizure." It's so hard on younger kids to understand that seizures are not going to always be extreme like the ones they see on movies. I told her what to look for in case he was with her again and we were not in the room. A major sign would be him whining and saying he's scared. I assured her that it wasn't her fault and he would be okay. He woke up after a good 45 minute deep sleep and then we headed to the park to see Spiderman and the rest of his day went extremely well! Mike and I were sure that this would be the only seizure b/c he has been having one a week for some time now. So we were both glad to "get that out of the way", but we were wrong. Mon-Wed went GREAT and Jayden was having so much fun! Thursday was Mike's birthday and we had reservations at Chef Mickey's for breakfast. Jayden woke up feeling warm. I left his thermometer at home, but my mom and I both agreed that he felt warm enough to need some Motrin, so I gave him some before we left for breakfast. He was very quiet and drowsy on the ride to Chef Mickey's. My dad and I kept saying "I don't think today is gonna be a good one for him." We got to Chef Mickey's and he seemed to perk up a bit, but you could tell he still wasn't feeling well. He only wanted to sit on my lap. When his food came out, he did eat some, which I thought was a good sign. His eyes had a very far away look to them though and he kept staring off into space. When Mickey and Minnie came to the table he hopped out of his seat to give them hugs, but his coordination was WAY off. He still wanted to see them though. He'd give hugs, pose for a picture, and then walk back to his seat and finish eating. And can I just say that we found out that Jayden has a huge crush on Minnie?? He gives her the sweetest look and the smile that shows both of his dimples. That was no different on this morning and he even followed her to give her one last hug before he came back to the table. I went to get him some more sausage links and when I got back to the table my mom was holding him. He was moaning in her arms, just very uncomfortable. Then his moaning got loader and suddenly stopped. His eyes rolled back and he tensed his limbs. It was as quick as 3 seconds but it exhausted him :( He was in and out of it for the rest of breakfast. He was still whining and pointing at Goofy and Pluto b/c he wanted his picture with them. I held him in those pictures and then when I sat back down, he crashed. The chef (who fixed Jayden's GF meal) came out to check on him and asked if we needed someone from first aid, but we figured he'd be ok. We sat at the table a while longer so that he could rest in the AC before we went out in the heat to either go back to the resort or head to Hollywood Studios. It's hard to tell with Jayden b/c he can pass out after a seizure and wake up like nothing ever happened and trust me you'd hate to be the one trapped in a resort with him once he gets up b/c it's like his little body has completely recharged and he cannot stop! He slept for about an hour in the restaurant and in the hotel lobby. When he woke up he was talking and pointing, even responding to questions. This usually means he's okay, so we caught the transport bus to Hollywood Studios. When we got to the gates he said "YAY!! Disney!!" We got a map and we 1st went on the movie ride (it's like a moving theater that rides you through different movie scenes). Jayden LOVES the movies! He got in his seat, which was right behind the driver and he pointed to himself and said "Hi, I Jayden Johnson!". He was SO ALERT on this ride and his face of shock had returned. At one point our driver got off and played in a scene and another person hopped on and "stole" our moving theater. Jayden looked at her with his eyebrows down and said "HEY!!" He was completely there so we had no reason to think that he was not okay. When the ride was over he stood up and clapped :) After that, we headed to the Muppet 3D show. We were trying to take advantage of everything that was indoors in AC until later, just in case. Well, in the Muppet 3D show, just in case actually happened. We used the handicap entrance (and can I say how guilty I felt pushing my child in a stroller through the handicap line with kids who were in wheelchairs??) and sat in the accessible rows which were right near the exit. He sat on my lap and then once the show started he got clammy and started crying. He kept saing "Ouch". I asked what hurt and he was very uncomfortable. His whining turned into crying. Sometime he throws up after a seizure so I thought maybe he was about to through up after his seizure he had that morning. I kept saying where's your bobo and he pointed to his head :( Then he had another seizure. Mike picked him up and sat on a bench against the wall to calm him down. Then we put him in his stroller and went straight to first aid. They gave us more ice packs and let us sit in there with him for as long as we needed. We decided that going back to the resort at that point wouldn't be the best option b/c it would mean bringing him in the heat to wait for the Disney transport, taking him out of the stroller to get on the bus, walking in the heat to the truck, etc. It was just too much stimulation when what he really needed to do was rest. So we sat there with him. First me, then my dad, while we took turns taking my niece around the park. She wouldn't smile though. She didn't want to go around the park, she wanted to be with Jayden. In the 1st aid center, another mom commented on how he was living the good life. Little did she know that he was actually suffering. We weren't in there just so he could get a nap in. He slept in the first aid center for about 30 minutes then woke up and watched the cartoons. When we got there to check on him my dad said that he was up for a long time but wasn't talking. That concerned us b/c it had been nearly 2 hours since the seizure. So I started asking him questions. He never answered any. Then I asked him if he wanted ice cream and all of a sudden he says "Let's go!" LOL! We took him to get his picture taken with Buzz and Woody and by the time he was done with that, Jayden was back and ENERGIZED. He was not listening, he was touching everything, he was singing, and he was begging for everything he saw! we went inside to the playhouse disney show and he was dancing all over and screaming "OH TOODLES!!" Yep he was refreshed!
Oh and there was lots of Ugly on our trip as well... First lets talk about the Harry Potter ride!! The ride that many people waited in line for nearly 8 hours at a time when it first opened. We had a fast pass so we didn't wait nearly as long (maybe 10 minutes tops) but little did we'd be on the actual ride for well over an hour. We were riding and all of a sudden the sound stops and the rides comes to a stop. An announcer comes over the loud speaker and says something about technical difficulties. I thought it was a part of the ride as we were hanging there leaning forward with all of our weight on the chest bars. Then about 3 minutes later we are still sitting there and the lady says something else about technical difficulties and that they will be turning on the lights for us and moving our seats to a more comfortable position. 10 more minutes pass and then she comes on and says "I apologize but we are not able to move your seats at this time. We will be sending an emergency crew to evacuate the cars one by one. This evacuation process could take close to an hour to complete. Thank you for your continued patience." WOOOOOOW!!! So we just hung there. At first we tried to make light of the situation and we told jokes and got really acquainted with the guy who was in the car with us. But after hanging like that for over 30 minutes and no rescue in sight, panic started to sink in. My mom was getting a headache and I was getting claustrophobic. I used my mind to ward off two panic attacks that almost set in. I actually had to close my eyes and think of my somewhere totally different. It was AWFUL! But to make matters worse, when we were finally rescued after hanging there for over an hour, the ride staff was VERY NASTY to us. One person yelled at a rider for taking pictures with his phone. Then a lady yelled at me when I stopped to wait for my mom who was looking very sick and could barely walk straight, "THE EXIT IS RIGHT THERE KEEP IT MOVING!" No apologies or anything. We went to guest services and complained and they issued us an extra day in the park. We couldn't use the extra day but at least they did something about the matter. When we got back to the resort we found out that the Harry Potter ride has these technical issues very often. Just go on youtube and search for "Stuck on Harry potter ride". You'll find several videos. I guess the person who yelled at the guy for taking pictures didn't have the opportunity to catch all of the videos being made, LOL! Surprisingly, we also ran into some ugliness at a Disney Park. We were at Epcot and all of a sudden there was a huge downpour of rain. A huge crowd of people were running to the building to get out of the rain. Of course you have to expect to get bumped into. I was running and pushing Jayden's stroller when I mistakenly ran up on a woman's leg. She stopped and turned around and looked at me with the death stare. I said "I'm so sorry I'm just trying to get my son out of this rain." She continued to stare and wouldn't let me move and then I ended up being pushed by the crowd behind me and the stroller hit a man. He proceeded to turn around and yell at me in Spanish. It was a huge, ridiculous mess. I simply said "What do you expect to happen when a large crowd of people are running to the same place at the same time??" Goodness!! And finally, on our last day at the parks, Jayden's stroller tire went flat. It would not hold air in it so we had to use one of the rental strollers from the park. Poor Jayden was SO uncomfortable. Who wouldn't be?! Those stroller are awful! I was so upset, but thankful that this happened on our last day.
Looking back, I've learned so much on this trip. First of all, I don't think I had fully accepted just how bad Jayden's epilepsy is. I thought I did, but truly I hadn't until I looked back at the pictures on my camera. On the days where he was not having seizures, he has so much life in his eyes. On that day at Chef Mickey's, even before the first seizure, there was nothing. He just had a blank expression in every picture. Even if he smiled there was nothing behind the smile. That broke my heart. The seizures truly affect him in ways I never seemed to notice. I don't know why I never noticed it. Maybe b/c I want to wish it all away. But it is there and I need to accept it. Sure, it could be worse. He could be wheelchair bound like so many of the kids I saw at the parks. But the truth is, I should not feel any guilt for pushing him through the handicap entrance b/c he truly needs the accommodation. I always tell people that the seizures don't scare me much, I just feel really sorry for him when it happens b/c he's scared. Perhaps I was in shock or denial about ti all, b/c after this week, I am nervous and scared about them. I don't want him to have them anymore b/c I don't want to see him with that blank expression ever again. I don't want to imagine just how scared he must be or how much it must hurt him. I want them to stop. I've also realized just how much he NEEDS a stroller. He's 3.5 and 40 inches tall. You'd think that by now we could just toss the stroller, but I saw how his coordination is thrown way off well before he even has a seizure. There are days when I'm dragging him out to a store with me and he falls in the parking lots, or cries and says his head is hurting, and then later he has a seizure. He knows when they are coming, I don't. I think keeping him in a stroller would help both of us b/c I know how hard it is for me to walk when I'm dizzy and I also know how hard it is for me to have to carry him after he has a seizure and I am miles away from the truck. The hard part about that will be finding a stroller that's big enough to accommodate him, yet small enough for me to keep in our car or truck whenever we go someplace. I have learned that I need to carry a thermometer and Motrin with me at all times. He doesn't normally have febrile seizures (actually Thursday was the first time he had a fever before having a seizure), but I definitely need to make sure his temps are not going over 99.5 since he does have the seizure disorder. I also realize just how much we need this new neurologist to find out why he is having so many seizures and how we can better control them. We need some answers b/c he is still suffering. Sure the seizures are only 3-5 seconds long, but we have no way of knowing how strong and painful those 3-5 seconds are to him. They are obviously very strong b/c he passes out after. And not to mention how horrible he feels well before the seizure even happens. We need answers and I pray that this Dr can help him. we meet with her on the 26th of this month. I've learned that it's time for me to accept that my child has a disability and I need to make changes in our life to make his life easier. I can and I will do it for him. He deserves it.
All in all, our family vacation was a huge success!!
Thank you for visiting our blog! We are happy to share a little bit of our lives with you. After years of battling infertility, we adopted our son, Jayden, at birth and 5 years later I gave birth to our newest addition, Elias. God is so good!!
This blog is a mixture of personal thoughts, daily battles and triumphs with Jayden's health, and about our experiences as a family of 4. So sit back and enjoy our crazy life!