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Old 04-19-2009, 10:42 PM   #1
merneric
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Sam's MAW Pre Trip Report

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!
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Old 04-20-2009, 02:17 PM   #2
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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!
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 04-20-2009, 03:14 PM   #3
3princesses+aprince
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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
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Our very magical, very first trip to Disney World!!
http://www.disboards.com/showthread.php?t=2182745

Come check out my Pre Trip Report, May 09
http://www.disboards.com/showthread.php?t=2066680
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Old 04-21-2009, 09:49 AM   #4
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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!
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Old 04-24-2009, 10:32 AM   #5
keetmommy
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You get in the day after we leave! Love to see how close it is getting! Hope you have a great time!
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Old 04-24-2009, 02:18 PM   #6
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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!
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Old 05-15-2009, 11:24 AM   #7
merneric
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Here's a pic of our wish kid...


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Old 05-15-2009, 11:59 AM   #8
maroo
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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!
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Old 05-15-2009, 03:17 PM   #9
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That is a great photo! Thanks for sharing!
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 05-15-2009, 03:25 PM   #10
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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!
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Old 05-15-2009, 04:35 PM   #11
bellairisa
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Hi, great start to your PTR, signing up for more. I can't wait to hear more about your plans.
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Old 06-07-2009, 07:27 AM   #12
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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!!!

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Old 06-12-2009, 02:28 PM   #13
merneric
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Here are some pictures of Sam's send off dinner




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Old 06-12-2009, 03:08 PM   #14
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Love the pics. He looks so happy. Not long now! Bet he is getting super excited.
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Old 06-19-2009, 08:16 PM   #15
Andreaswish
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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
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Andrea's Wish Pre trip: http://www.disboards.com/showthread....2133000/COLOR]


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