We began our day very early in the morning; our limo provided by Make-A-Wish picked us up at 3:45 am to go the airport for our 6:10 flight. Rudy and I were so excited and had not gotten more than 3 hrs sleep due to being up preparing last minute items the night before. Everything went really smoothly at the airport and we had about 45 minutes to spare by the time we got checked in and were waiting at our gate. We had some Starbucks and got the kids something to eat. Our group includes Rudy’s Mom Josie, we are so happy that she was able to attend with us, and it is so nice to have another adult along and wonderful to be able to share this opportunity with her.
Evan in the limo at 4am, he woke up pretty cranky but was so happy when he saw the big car.
Evan thought it was too early for pictures.
So our flights are to consist of a 90 minute flight from Sacramento to San Diego and then about 1hr layover in San Diego and then we go from San Diego to Orlando and arrived in Orlando at 6pm. Our first flight was awesome. Evan’s car seat fit great, we got the bulk head seating. I just have to say that Southwest was so awesome; we got first priority for seating since we had a disabled person in a wheelchair in our group. We got to take Evan right up to the gate in his chair and it was waiting for us once we stepped off the plane. Evan really loved taking off, he would get excited and put his feet out and hands up like he was on a roller coaster. Gabriel I think was a little nervous as it was his first time on an airplane but he did awesome. Evan slept for about the second half of the flight.
We arrive in San Diego thinking we had a good 45 minutes to get something to eat and then board our plane. We had gotten our food and headed over to the gate just as they were announcing the 5 minute warning for boarding. So we were getting all of our stuff together when we get the announcement that there will be a delay as there is some liquid on the wing and they need to have maintenance check it out.
So we are waiting and we encounter two more Wish families who are going to Give Kids the World and Disney just like us. So all in all, we probably waited about 4o minutes to get on board our flight. While at the gate waiting we realize that this flight is going to have a layover in Nashville, TN but we do not have to change planes. Again, this flight goes very well. We get complimentary drinks (sodas) and snacks plus are able to eat what food we brought on board. I finished the current book I was reading and as we leave Nashville headed for Orlando I try to catch some sleep. Evan was falling asleep and this is another 90 minute flight so he will get a nice little rest to recharge his batteries.
I am looking out the window and watching Evan when I notice that he is looking at me (to his left) when if he is awake he is usually looking out the window and pointing to things and making sure I look as well. He kind of has a weird look, like he is looking past me. But I say Evan are you Ok, and he responds with his version of yes. He is looking to the right but I am still able to get him to look at me when I call his name. I am thinking seizure but not sure since he is able to look at me and he is blinking. Well, then his eyes go all the way to the left and he is basically staring into his car seat. No longer wondering if this is a seizure I know it is. Just like the one he had on Thanksgiving, the 10 minute one. So I get Rudy’s attention who is in the row across from us. The seatbelt sign in still on but he gets up and comes over as we see Evan go deep into the seizure, we tell his mom to start timing it. I think probably at least a minute has elapsed but I know maybe it is not as much time as I think. So I tell Rudy to grab our medication bag in which I have Evan’s Diastat, I want to give it to him but I am afraid of what his reaction will be as I have been told that it can depress your respiratory system, I do not want that to happen in the air.
Thankfully, we only had 4o minutes until we landed. So we get the flight attendant’s attention just as Evan is doing his gagging part of his seizure, he vomits a little and then gets really floppy and starts trying to sleep. In the meantime, the flight attendant has moved me to stand in the galley (basically the entryway to the plane) it is cooler there. She asks if I have his rescue med and I say yes. Then she tells me that her son used to be on Phenobarbital but has outgrown his seizures. She has called ahead and is prepared to have EMS waiting for us as we exit the plane; we do not end up needing it as Evan is out of the seizure and sleeping which is par for the course for his seizures. After, I knew it was over and I was talking to the flight attendant I kind of started to cry. Why did this have to happen on the airplane of all places and on our way to this awesome place? I get my composure quick and go sit down with Evan. Behind us in a Mom with her 18 year old son who has what I assume is CP due to a traumatic brain injury. So she turns her fans on us to help Evan and I think how cool that I have one mom who has been there done that as far as seizures go and the flight attendant who also has dealt with seizures.
Mommy, Daddy and Gabriel in the Limo
So we arrive in Orlando without anymore snafus. We get all of our stuff, and exit the plane. Evan is very cranky but doing well. Orlando International is a huge airport; we have to take a tram to the main terminal and the baggage claim area. Once we get past security we see the Give Kids the World greeter. I breathe a huge sigh of relief because we are here and everything that is supposed to happen has happened. We are about 45 mins late but she is a prepared greeter and has checked the flights beforehand so she knew we would be late. I feel a huge weight lifted off of my shoulders and just hope that Evan does not have anymore seizures. We get our bags and the GKTW volunteer has gotten us a Smarte Cart for our luggage, which I see costs $4, so nice not to have to worry about that. Plus, we had a lot of luggage and a car seat to carry. We go with the greeter and the other two families to the Avis rental area. Our car is a Chrysler Town and Country, the 2009 models and this baby is loaded, I thought it would just have the minimum but no it has the auto doors and hatch plus a DVD player. I love the auto doors. So I get Evan’s seat installed and Rudy gets the car packed. We start our drive to GKTW which is about 30 mins away. We are remarking on how smooth our ride is and looking at the sights.
Then Evan starts fussing, holding his head and grinding his teeth. Shit, it looks like he might be going into another seizure, then he vomits. I am driving and Rudy is next to me and Josie is in the back next to Evan. They grab whatever they can to clean him up. All I am thinking is great, we are going to spend our first night in Orlando at the ********** hospital. I want to cry but I have to focus on the road and getting us to our destination. We arrive, change Evan’s shirt and go to check in.
This is where the magic begins. We get the quick review of the whole process at GKTW, we get a ride to our villa and a quick tour. It is 8:45 pm in Florida at this time and we are all hungry and very happy to hear that the restaurant is open until 10pm and the ice cream parlor is also open. So we unload the car and walk to get our dinner and desert. Evan is still cranky and I am just amazed at this place. We decide to get our food delivered to our villa and then we all go get an ice cream. We figure we can eat dinner, shower and hit the sack. Evan is still cranky, upset that he did not get a cone; we had to get him a cup so we could put his meds in the ice cream. Well, he is just way too cranky so I get him ready for a bath in the Jacuzzi tub. It is a small tub but how cool that it has this feature. Evan is reluctant at first but he then warms up to the idea and ends up loving his bath. After, the bath Evan is pretty much back to normal. We have a small delay with our food and end up eating at 10pm. But let me tell you the food was great and there was a lot of it. So finally, we get everyone in bed for the night. We have to get up early for our 8am pics with Mickey and Minnie, then it is breakfast and a 9am orientation and we will probably head off to The Magic Kingdom.
In bed I say a prayer thanking Him for our safe arrival, the awesomeness that is GKTW, the
blessings in being able to take this trip and Evan not having any major problems with his seizure such as breathing or losing consciousness. Plus, we get a King size bed. I end my prayer by asking for a smooth day tomorrow and I feel so much better about how the rest of this vacation is going to be. As I write this at almost 5 am pacific time, it has not quite hit me that we are here in the place that we have been looking online at and dreaming about going to.
I can’t wait to get started. Southwest was our airline and they were so awesome with accommodating the needs of Evan and our family, to helping out when he had a seizure. I am definitely going to be calling and/or writing a glowing report about our experience.
Grandma Josie, Cynthia and Evan in the limo
