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Old 11-21-2008, 12:43 PM   #1
munch704
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Princess Morgan gets her wish

New to this so please be gentle.

On January 1, 2009 we are heading out on a wish trip thru Starlight Starbright Foundation. We will return January 7th.

The cast

mom- Staci 34 Lover of all things Disney. First trip was for my honeymoon in 2000. Just had back surgery so lots of time on my hands

dad- Jim 37 Lover of all things Star Wars and handles my Disney obsession well. Has major back issues and will have surgery beginning of December for pain stimulator to hopefully make life bearable.

dd1- Miranda 14 loving big sister, trying child , high honors student, marching band member, volunteers lots of time to charities

ds- Dustin 11 great big brother to Morgan, full time pest to Miranda, also high honors student in GT classes. forever watchful of his little sister

dd2 Wish Child- Morgan 4 (will be 5 when we go) what can I say about Morgan---


Morgan was born Dec 2003 full term via scheduled c-section. After not holding her temp they starting doing testing on her. Come to find out she has DiGeorge Syndrome (also known as 22q11 deletion) She spent 9 days in the hospital (5 in NICU) before getting to come home on Christmas Eve

The last (almost) 5 years have been a roller coaster.

She suffers from right hemi palagia- wears an afo, polymicrogyria, epilepsy, anemia, hyperthyroidism, and is mostly non verbal.

Morgan is also one of the Ambassadors for Easter Seals CT.

Her neurologist suggested a wish for her and while we originally wanted an outdoor playscape her love for Little Einsteins won out.

We have been to Disney before and when she got out of her seat at the Playhouse Disney Tour to sing and dance it brought tears to my eyes. My only goal of this trip is to eat at Hollywood & Vine to visit with her favorite friends. She does like the princesses also and Star Wars (we are members of the 501st) and can't wait for her to actually experience Star Tours.


Don't know what else to say right now. How'd I do?
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Old 11-21-2008, 01:11 PM   #2
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Hi Staci,

Congrats on your wish trip!

I just realized that you are shipping out on New Years Day!!!!

I am looking forward to hearing more about Morgan and your family, plus maybe seeing some pics too?? I pics

Mandy
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Old 11-21-2008, 02:07 PM   #3
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Coming along for the ride.
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Old 11-21-2008, 02:12 PM   #4
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Quote:
Originally Posted by munch704 View Post
New to this so please be gentle.

On January 1, 2009 we are heading out on a wish trip thru Starlight Starbright Foundation. We will return January 7th.

The cast

mom- Staci 34 Lover of all things Disney. First trip was for my honeymoon in 2000. Just had back surgery so lots of time on my hands

dad- Jim 37 Lover of all things Star Wars and handles my Disney obsession well. Has major back issues and will have surgery beginning of December for pain stimulator to hopefully make life bearable.

dd1- Miranda 14 loving big sister, trying child , high honors student, marching band member, volunteers lots of time to charities

ds- Dustin 11 great big brother to Morgan, full time pest to Miranda, also high honors student in GT classes. forever watchful of his little sister

dd2 Wish Child- Morgan 4 (will be 5 when we go) what can I say about Morgan---


Morgan was born Dec 2003 full term via scheduled c-section. After not holding her temp they starting doing testing on her. Come to find out she has DiGeorge Syndrome (also known as 22q11 deletion) She spent 9 days in the hospital (5 in NICU) before getting to come home on Christmas Eve

The last (almost) 5 years have been a roller coaster.

She suffers from right hemi palagia- wears an afo, polymicrogyria, epilepsy, anemia, hyperthyroidism, and is mostly non verbal.

Morgan is also one of the Ambassadors for Easter Seals CT.

Her neurologist suggested a wish for her and while we originally wanted an outdoor playscape her love for Little Einsteins won out.

We have been to Disney before and when she got out of her seat at the Playhouse Disney Tour to sing and dance it brought tears to my eyes. My only goal of this trip is to eat at Hollywood & Vine to visit with her favorite friends. She does like the princesses also and Star Wars (we are members of the 501st) and can't wait for her to actually experience Star Tours.


Don't know what else to say right now. How'd I do?
Congrats on your dates!! can't wait to hear more! Sounds like it is a much needed trip for all of you. Can't wait to hear more and see pics!

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Old 11-21-2008, 02:18 PM   #5
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Quote:
Originally Posted by llurgy View Post
I just realized that you are shipping out on New Years Day!!!!
Figured a good way to start the new year. Pics to come once I can get to my regular computer. I've been stuck in bed on a laptop. Thank the inventor of laptops
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Old 11-21-2008, 02:32 PM   #6
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Awww, are you sick??
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Old 11-21-2008, 02:42 PM   #7
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Awww, are you sick??

I had back surgery on Monday but feeling much better then I was the past 3 weeks.
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Old 11-21-2008, 03:13 PM   #8
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Pixie dust wishes for a speedy recovery
Mandy
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Old 11-21-2008, 05:07 PM   #9
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Great start! I know DiGeorge syndrome can come with immune deficiency issues, does Morgan suffer from any of those?

I can't wait to hear all about it!!
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Old 11-21-2008, 06:06 PM   #10
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yeah! another wish trip!

You did a great job, by the way! And I hope you feel better soon!!!

I can't wait to hear about your plans and your adventures!

Those character meals sound great...maybe you should book them early and if you have a good time, you can go back again during your trip!
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Old 11-21-2008, 06:48 PM   #11
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Quote:
Originally Posted by mom2lilnick View Post
Great start! I know DiGeorge syndrome can come with immune deficiency issues, does Morgan suffer from any of those?

I can't wait to hear all about it!!

She has suffered from low immune in the past but for the past 2 years she has been in the "normal" range. Just making it into that range but in it none the less
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Old 11-21-2008, 08:19 PM   #12
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Congrats on your wish trip cant wait to here more.






Ians pre trip report
http://www.disboards.com/showthread.php?p=28843133#post28843133
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Old 11-21-2008, 08:25 PM   #13
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Quote:
Originally Posted by munch704 View Post
She has suffered from low immune in the past but for the past 2 years she has been in the "normal" range. Just making it into that range but in it none the less
that is great that she is Normal
can't wait to hear more about your trip
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Old 11-23-2008, 10:12 AM   #14
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Originally Posted by tinytreasures View Post
that is great that she is Normal
can't wait to hear more about your trip
That made me smile Kathleen. Probably in a way most parents of disabled children would understand.

Morgan attended a birthday party last nite at a gymnastic center. While everyone else was "typical" she was right there trying her hardest. It brought a tear to my eye just knowing she couldn't do a cartwheel, somersault, jump, & climb like all the others, but she tried. Miranda was right there with her helping her along- except in the big moonbounce which she went into by herself w/4 other girls. She did GREAT!! she did fall down but got back up, and one of the girls took her hand.

I'm not good at stuff like this so I'll probably babble alot. I should have had an outlet long ago to talk about the goings on in my life but never did. Please bear with me, you will know my whole life story before long
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Old 11-24-2008, 05:38 PM   #15
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Your daughters sound great! Actually- all your kids sound great! I can hardly wait to get to know you all a little better!

Do you know where you'll be staying yet? I will be down there the same time as you will be. I'm bringing 6 of the 12 SIL with me. That ought to be fun- huh?!??!
We're all staying at a 2 bedroom at BCV's. We'll be there from the 4th-10th
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