Sam's MAW Pre Trip Report

[merneric]

This is a pre-trip report for our June 22-28 trip to WDW.
Let me introduce my family.
Dad (Eric)
Me (Mary Anne)
DD #1 (Rachael-15)
DD#2 (Emily-11)
DD#3 (Sarah-10)
Wish Kid (Samuel--we call him Sam-8)

Sam was a very healthy child and developmentally on track until he was 4 1/2. That is when he had his first seizure. After many tests, we were sent home and told it would probably never happen again. Two days later he had another tonic clonic seizure. Within a week, he was having 60-80 myoclonic seizures a day and up to 12 tonic clonic seizures a day. Our life was turned upside down, to put it mildly. Sam has been on multiple anti seizure medications, steroids, ketogenic diet, all with no success. He has been diagnosed with Lennox Gastaut Syndrome. It has been devastating for our family. Our life has been dictated by whether or not Sam is seizing at the moment. We haven't planned anything since the seizures started. We live one minute at a time.
That is one reason we are so excited for this trip. It is something we can all look forward to. We used to live about 3 hours from Orlando, so we have done day trips to Disney, but it has always been spur of the moment, so we have never had a "game plan", which I think takes away from it a lot.
I look forward to sharing our story with you.
I have really enjoyed everyone's posts and I am so excited about all the things I have learned. It is going to be a magical vacation!

 

[kdzbear]

I am so glad you started a pre-trip report. I am sorry to hear about your son. I know how scary seizures can be. My son started having them at 6 months. At the time we had to have an EEG done and we had to sedate him to do it. After meeting with the neurologist he determined that it was not affecting his brain. We later determined that he was allergic to his DPT shots. I could not imagine what it would be like to have 60 in a day. I can't wait to hear more about the trip you are planning! Congratulations on receiving a Wish!

 

[3princesses+aprince]

joining your pre trip report!!! So Sorry about Sam's seizures, that must be so scary!
Can't wait to hear all about your exciting Disney Plans

 

[maroo]

I am subbing in!! I have also linked this in the Wish Trippers thread...so some of them should be stopping by soon!!

Hugs to you for all you guys have been through. Hopefully we can help you plan this magical trip!

 

[keetmommy]

You get in the day after we leave! Love to see how close it is getting! Hope you have a great time!

 

[BeckySob]

LaVista! Wow, you're lucky as you may be getting a baseball field put in near by! Or am I wrong on that one? Or is that Bellevue? Whichever, one of you is lucky, although, we really don't need another ball field.

You are going to have a great time!! I hope that I left some good advice? Remember, if you're doing 2 parks in one day, park your car at the park where you will end up, not begin at. It's an extra bus ride, but it's better than walking another mile to your car.

Thats awesome that Sam is getting his wish! Him and the siblings must be getting so excited! What have you done to prepare? Have you met with your MAW volunteers? We had Natalie and Joy. Come to think of it, I haven't heard from them. I need my pictures developed!

Keep us posted on your planning!

 

[merneric]

Here's a pic of our wish kid...

 

[maroo]

Oh, he is so cute!!



Handome, I mean, handsome! (Is he too old to be called cute anymore? )

And he can color so well!

I am excited for your trip!

 

[kdzbear]

That is a great photo! Thanks for sharing!

 

[BeckySob]

aw....Sam is such a good looking kid! Thanks for sharing the picture! It's always nice to see who it is that we are hearing about!

 

[bellairisa]

Hi, great start to your PTR, signing up for more. I can't wait to hear more about your plans.

 

[wkualum]

Thanks for stopping by Mikaela's PTR. Hopefully that darned seizure monster stays away from Orlando and lets Sam and your entire family have to not worry about them. Mikaela's mostly happen at night as she going into and coming out of sleep. But they do peak in when she gets overly tired so I'll need to be conscious of making sure she gets some rest time if she needs it in the middle of the day.

How exciting that your trip is coming up so quickly! Can't wait to hear (and see) more about how much fun you had!!!

 

[merneric]

Here are some pictures of Sam's send off dinner

 

[sammie girl]

Love the pics. He looks so happy. Not long now! Bet he is getting super excited.

 

[Andreaswish]

Love the pictures, what a handsome boy. I hope Sam and the rest of the family have a great trip. Enjoy yourselves, have fun and eat lots of ice cream.

Your trip is coming so close.

Diane

 

[merneric]

We are home! What an amazing, exciting, exhausting, perfect trip!
Stay tuned for stories of the "scenic route" around Orlando and the world record for longest out of the way route to find a Dole Whip!

 

[maroo]

We are home! What an amazing, exciting, exhausting, perfect trip!
Stay tuned for stories of the "scenic route" around Orlando and the world record for longest out of the way route to find a Dole Whip!

awesome!!!


perfect?!?


Fantastic!

 

[merneric]

Well, I guess perfect is a strong word Very close to perfect, though! Most things that I would change had mostly to do with time constraints. 5 days is just not enough to get everything done! An excuse to go back, I guess Even my husband (who was not looking forward to this trip) asked how much we would need to save up to come backI am uploading photos as we speak, hopefully to start TR tomorrow!

 

[merneric]

The big day is finally here! The limo is supposed to arrive at 4:00, but he is 10 minutes early, so we are heading out the door at 3:50 AM!!!

When we arrived at the airport the American Airlines staff was so friendly, they helped us with everything! When we got to the gate there was a MAW sign and balloons...I was so tired and out of it we didn't even take a picture
When we got on the plane, they took Sam into the cockpit.

Pictures from the plane

Layover time in Dallas

 

[merneric]

We arrived in Orlando, a very uneventful trip so far. We found our greeter and went to baggage claim. We waited...and waited...and waited....our luggage was not there! We went to the AA office and I guess our luggage went on an earlier flight than we did. Luckily, everything was there for us.

This is our first of many scenic routes of Orlando. First I should say we are all exhausted and extremely hungry at this point. Okay, 30-45 minutes until the Village? We can wait. Well, my husband decided to use the map on his new phone instead of the clear directions that GKTW had given us It took us over an hour to get there, but we did avoid a toll booth, so we saved 75 cents! He was quite proud of that Wechecked in and Sam got a Mickey Mouse and the girls got killer whale stuffed animals. Our villa wasn't ready, so we headed to Katie's Kitchen for dinner. We were so hungry, but they give you SO much food, at the end we were stuffed! We had our dinner and some ice cream, of course!