Sam's MAW Pre Trip Report - The DIS Discussion Forums

merneric · 04-19-2009, 09:42 PM

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 · 04-20-2009, 01:17 PM

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 · 04-20-2009, 02:14 PM

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 · 04-21-2009, 08:49 AM

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 · 04-24-2009, 09:32 AM

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

BeckySob · 04-24-2009, 01:18 PM

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 · 05-15-2009, 10:24 AM

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

maroo · 05-15-2009, 10:59 AM

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 · 05-15-2009, 02:17 PM

That is a great photo! Thanks for sharing!

BeckySob · 05-15-2009, 02:25 PM

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 · 05-15-2009, 03:35 PM

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

wkualum · 06-07-2009, 06:27 AM

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 · 06-12-2009, 01:28 PM

Here are some pictures of Sam's send off dinner

sammie girl · 06-12-2009, 02:08 PM

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

Andreaswish · 06-19-2009, 07:16 PM

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

04-21-2009, 08:49 AM	#4
maroo DIS Veteran Join Date: Aug 2008 Location: MS Posts: 8,049	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! __________________ The ABC's...a Trip Report!Make a Wish Sends Lauren to Disney - A Rainbow TR!Wish Trippers UNITE! A thread for wish families.♥ A Wish Granted - One Magical Morning ♥ Matty and the Gingerbread Men!Video of GKTW on the Today Show!! ~ ~

04-24-2009, 01:18 PM	#6
BeckySob Mouseketeer Join Date: Mar 2009 Location: Elkhorn, Nebraska Posts: 124	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! __________________ Our pre trip report http://www.disboards.com/showthread....9#post31157769 Our POST Trip Report http://www.disboards.com/showthread.php?t=2154685 Becky

05-15-2009, 10:24 AM	#7
merneric Mouseketeer Join Date: Mar 2009 Posts: 109	Here's a pic of our wish kid... __________________ You can find our pre-trip report http://www.disboards.com/showthread.php?t=2154018

05-15-2009, 10:59 AM	#8
maroo DIS Veteran Join Date: Aug 2008 Location: MS Posts: 8,049	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! __________________ The ABC's...a Trip Report!Make a Wish Sends Lauren to Disney - A Rainbow TR!Wish Trippers UNITE! A thread for wish families.♥ A Wish Granted - One Magical Morning ♥ Matty and the Gingerbread Men!Video of GKTW on the Today Show!! ~ ~

05-15-2009, 02:17 PM	#9
kdzbear DIS Veteran Join Date: Jul 2006 Location: KS Posts: 1,316	That is a great photo! Thanks for sharing! __________________ Me DH DD12 DS7 DD4 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

04-19-2009, 09:42 PM	#1
merneric Mouseketeer Join Date: Mar 2009 Posts: 109	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! __________________ You can find our pre-trip report http://www.disboards.com/showthread.php?t=2154018

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04-20-2009, 01:17 PM	#2
kdzbear DIS Veteran Join Date: Jul 2006 Location: KS Posts: 1,316	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! __________________ Me DH DD12 DS7 DD4 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

04-20-2009, 02:14 PM	#3
3princesses+aprince DIS Veteran Join Date: Feb 2006 Posts: 3,893	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 __________________ Pam Emily(13) Lizzie(11) Samantha(8) 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

04-24-2009, 09:32 AM	#5
keetmommy Mouseketeer Join Date: Jan 2008 Posts: 361	You get in the day after we leave! Love to see how close it is getting! Hope you have a great time!

05-15-2009, 02:25 PM	#10
BeckySob Mouseketeer Join Date: Mar 2009 Location: Elkhorn, Nebraska Posts: 124	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! __________________ Our pre trip report http://www.disboards.com/showthread....9#post31157769 Our POST Trip Report http://www.disboards.com/showthread.php?t=2154685 Becky

05-15-2009, 03:35 PM	#11
bellairisa Disney-lover Join Date: May 2009 Location: Elk Grove, CA Posts: 61	Hi, great start to your PTR, signing up for more. I can't wait to hear more about your plans. __________________ bellairisa Malia Malia's Make-a-Wish PTR: http://www.disboards.com/showthread.php?t=2171173 [img]http://www.********************/timers/tickers/b40j0wglwa9sl9az.png[/img]

06-07-2009, 06:27 AM	#12
wkualum Mouseketeer Join Date: Jun 2009 Location: Louisville, KY Posts: 146	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!!! __________________ Shari and Mikaela (8) Mikeala's Pre Trip Planning [img]http://www.********************/timers/tickers/brlajxzqjtue1ggs.png[/img]

06-12-2009, 01:28 PM	#13
merneric Mouseketeer Join Date: Mar 2009 Posts: 109	Here are some pictures of Sam's send off dinner __________________ You can find our pre-trip report http://www.disboards.com/showthread.php?t=2154018

06-12-2009, 02:08 PM	#14
sammie girl Mouseketeer Join Date: Apr 2009 Location: missouri Posts: 234	Love the pics. He looks so happy. Not long now! Bet he is getting super excited. __________________ http://www.disboards.com/showthread....1#post31546801 [img]http://www.********************/timers/tickers/em1y09w9xi7xbwk3.png[/img]

06-19-2009, 07:16 PM	#15
Andreaswish Mouseketeer Join Date: Mar 2009 Location: Western Michigan Posts: 159	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 __________________ ds Matt 13 yrs old dd Andrea 10 MAW child : Diane (Mommy) Scott (Daddy) Andrea's Wish Pre trip: http://www.disboards.com/showthread....2133000/COLOR] Andrea's Carepage www.carepages.com/andreaavinklovespugs [IMG]http://www.********************/timers/tickers/svq6euz0ub9bu206.png[/IMG]

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