Princess Morgan gets her wish

[munch704]

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?

 

[llurgy]

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

 

[jessica52877]

Coming along for the ride.

 

[iu97alum]

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!

 

[munch704]

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

 

[llurgy]

Awww, are you sick??

 

[munch704]

Awww, are you sick??

I had back surgery on Monday but feeling much better then I was the past 3 weeks.

 

[llurgy]

Pixie dust wishes for a speedy recovery
Mandy

 

[mom2lilnick]

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!!

 

[maroo]

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!

 

[munch704]

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

 

[zeppy68]

Congrats on your wish trip cant wait to here more.






Ians pre trip report
http://www.disboards.com/showthread.php?p=28843133#post28843133

 

[tinytreasures]

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

 

[munch704]

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

 

[karebear1]

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

 

[munch704]

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

Thanks karebear1

I am kinda biased cuz they are my kids but I do have to say they are pretty great.

We are staying off site at Embassy Suites. I keep meaning to look at the place and distance to make my plans but for some reason it seems so overwhelming this time. I commented to my husband that we won't get to take the boat from POR to DTD which is a favorite of ours. I think we will maybe just go for the ride however

I would love to meet up with some people while we are there. I'm gonna try really hard this long weekend to get the kids together and make an itinery.

 

[munch704]

I keep meaning to write more about my family but get sidetracked. I've also been trying to post pics but don't know how
I do know that we will be at Hollywood Studios on Jan 5th because I was able to book Hollywood & Vine for lunch!!! Morgan is going to be so excited. I think we'll spend quite a bit of time sssllllloooooowwwllllyyyyyy eating.

Hope everyone had a great Turkey Day. We endend up having Thanksgiving 4 separate days. I'm stuffing'd out.

So for sure I know that Monday will be spent going on Star Tours multiple times, seeing Playhouse Disney multiple times, eating lunch at H&V and going to Fantasmic. Oh and I will definitely be getting chocolate covered strawberries for myself!!!!

 

[HeatherSue]

I'd love to see some pictures! So, here are the instructions that are on the disboutiquer's thread:

1. Upload the pic of your choice to photobucket
2. Resize the pic in photobucket click on the thumbnail of the picture, it will open up, then click (above the pic)> resize > 15" screen- it will make you verify that you would like to resize the pic (I like the 800X600 size pictures instead of the message board setting, it shows lots more detail)
3. After the pic has resized, go to your album, below the pic that you would like to post, there are 4 different codes (email & IM, direct link, html code & IMG code) Click in the box that has the has the IMG code. It will look something like this http: xxxxxxxxxxxxx
When you click on that box, it will light up in yellow, and say "Copied"
4. In the thread on the Dis (in another open window), click on "post reply". When you are ready to post the pic, right click - a box will open, click on paste. This will paste the link that you copied from your photobucket account.
5. Post reply. The pic should show up!

 

[jessica52877]

I agree! We LOVE pictures!

 

[munch704]

Thanks HeatherSue
I guess I know what I'll be doing tomorrow. I have over 7,000 pics on one memory stick. I'll go check out photobucket and get started. I may just link to that site after putting up some pics here.