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Old 03-08-2009, 01:47 PM   #1
keetmommy
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Emma's Make A Wish Trip....June 15-21,2009

My DD Emma (almost 7) was born with a genetic disorder called Neurofibromatosis or NF1, most people (60%) with this disorder have no problems. Some have a few problems (20%) and then ther is Emma , shehasn't been so lucky, she is in the rare 20% of people she was born with a something called pseudoarthrosis of the tibia, most people with this will end up with Amputation, she has been lucky and still has her leg, but often experiences pain and has to be really careful.
Then about 1.5 years ago a MRI showed multiple brain tumors, and hydrocephalus. One of these brain tumors is inoperable being it is on her optic chasim, (where the optic nerves meet), this tumor has left her legally blind.she has had 7 surgeries since July '07, 2 of them being recections,of a tumor that was in her Temporal Lobe, that grew back after July and had to be cleaned up again in Feb '08 after that she started a 15 month protacal Chemotherapy that had to be stopped after a year due to allergic reactions. We are now in what is called watching and living mode. Could we end up back in chemo eventually, Sure but for now we are going to enjoy life, Her next MRI is in May-1 month before we leave...(we are under 100 days now though....)
We were at Disney last year, through the help of family. After all of Emma's surgeries, My Godparents let us use their timeshare, IL's bought plane tickets...my parents rented our car...we called it the NON-Make A Wish, Make a Wish trip..
So now for the fun...she is standing up in a wedding the weekend before we leave and we are leaving EARLY on June 15....we will be in Orlando by 1:15 on that day..they are planning a princess meal for us, as that is who Emma loves the best. We are HUGE Jimmy Buffett fans, so a trip to Margaritaville will have to happen...I think that will be on the 17th because that is my birthday. Don't know what else we will do...just wishing it was now as I am watching MORE snow fall outside (we are going to get 4-8 inches today....)

Amie
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Old 03-08-2009, 02:40 PM   #2
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Quote:
Originally Posted by keetmommy View Post
My DD Emma (almost 7) was born with a genetic disorder called Neurofibromatosis or NF1, most people (60%) with this disorder have no problems. Some have a few problems (20%) and then ther is Emma , shehasn't been so lucky, she is in the rare 20% of people she was born with a something called pseudoarthrosis of the tibia, most people with this will end up with Amputation, she has been lucky and still has her leg, but often experiences pain and has to be really careful.
Then about 1.5 years ago a MRI showed multiple brain tumors, and hydrocephalus. One of these brain tumors is inoperable being it is on her optic chasim, (where the optic nerves meet), this tumor has left her legally blind.she has had 7 surgeries since July '07, 2 of them being recections,of a tumor that was in her Temporal Lobe, that grew back after July and had to be cleaned up again in Feb '08 after that she started a 15 month protacal Chemotherapy that had to be stopped after a year due to allergic reactions. We are now in what is called watching and living mode. Could we end up back in chemo eventually, Sure but for now we are going to enjoy life, Her next MRI is in May-1 month before we leave...(we are under 100 days now though....)
We were at Disney last year, through the help of family. After all of Emma's surgeries, My Godparents let us use their timeshare, IL's bought plane tickets...my parents rented our car...we called it the NON-Make A Wish, Make a Wish trip..
So now for the fun...she is standing up in a wedding the weekend before we leave and we are leaving EARLY on June 15....we will be in Orlando by 1:15 on that day..they are planning a princess meal for us, as that is who Emma loves the best. We are HUGE Jimmy Buffett fans, so a trip to Margaritaville will have to happen...I think that will be on the 17th because that is my birthday. Don't know what else we will do...just wishing it was now as I am watching MORE snow fall outside (we are going to get 4-8 inches today....)

Amie
Welcome!!! Good start!!

Would you like to put pictures on there? You can, if you want.

Where are you guys staying? Do you know yet?

How many nights is your trip for?
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Old 03-08-2009, 02:54 PM   #3
keetmommy
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We are staying at give the kids the world....we will be there for 7 days and 6 nights...



Emma is our youngest...she is actually they bigger one in the picture...Delaney is the other child, she is almost 10...has an undiagnosed genetic disorder, but we think we may have an answer!



Here is the family at Margaritaville last spring....OUr oldest is 13 now...and taller then me..
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Old 03-08-2009, 04:46 PM   #4
Piper
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I have NF1, too. I am in the 20% that have mild problems (scoliosis and some tumors here and there) and my daughter is in the lucky 60% that has no problems--just a few small tumors!

I hope the chemo goes really well. I will keep your family in my prayers.
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Old 03-08-2009, 04:56 PM   #5
keetmommy
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Thanks Piper...I too have Nf1 with few problems..I sure hope Emma never has to do chemo again...but we know it is the nature of the beast....Thanks for your prayers...I know prayers got us through the last 2 years...
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Old 03-09-2009, 09:28 AM   #6
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Woo Hoo! Pics!

I am putting a link to your TR on the Wish Trippers Unite thread, if you don't mind.

Also...what organization are you guys going with? And where are you guys staying? And how many nights are you guys going for?
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Old 03-09-2009, 09:36 AM   #7
keetmommy
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We are going with Make a Wish
We are staying at Give the Kids the World
We will be there for 7 days and 6 nights...

It is fine to put the link on the wish thread...
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Old 03-09-2009, 01:54 PM   #8
muttshouse
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Hi Amie!

Welcome to the board!

What a great trip for Emma! Sounds like you're Disney veterans already.

I hope everything goes well with the docs.
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Old 03-09-2009, 02:53 PM   #9
maroo
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Quote:
Originally Posted by keetmommy View Post
We are going with Make a Wish
We are staying at Give the Kids the World
We will be there for 7 days and 6 nights...

It is fine to put the link on the wish thread...
I love your short, to the point answers. I need to learn to do that. So here is my attempt:

cool!
cool!
very cool!

And I already did... I guess I would have had to take it off, huh! Sorry about that...I should wait till you answer, huh!
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Old 03-09-2009, 03:10 PM   #10
Somer
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Congratulations on Emma's wish trip. Can't wait to hear more. My daughter is going in October.
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Mommy to Jozlynn,8 HRHS,PAIVS,TS,PAS,PFO,ASD(heart defects) www.littlezippers.com
and Ariana,6 Heart Healthy!

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Old 03-10-2009, 12:37 PM   #11
keetmommy
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We are actually trying not to plan to much of our trip as I here GTKW is amazing and we are going to want to spend time there...I know Emma wants to go on Splash Mountain again...otherwise I know they are going to set up a princess meal for us, and we want to do Margaritaville at Universal, the kids would love to feed the dolphins...MMM it seems so far away don't know what else to plan..
We were there last year, Emma doesn't like a lot of change and wanted to do everything we did last year, we are trying to change it up a bit though...
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Old 03-10-2009, 01:25 PM   #12
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Quote:
Originally Posted by keetmommy View Post
We are actually trying not to plan to much of our trip as I here GTKW is amazing and we are going to want to spend time there...I know Emma wants to go on Splash Mountain again...otherwise I know they are going to set up a princess meal for us, and we want to do Margaritaville at Universal, the kids would love to feed the dolphins...MMM it seems so far away don't know what else to plan..
We were there last year, Emma doesn't like a lot of change and wanted to do everything we did last year, we are trying to change it up a bit though...
Are you guys in the Orlando area very often? After your Wish Trip you have a standing invitation to visit GKTW whenever you are in town.

I visited twice on my last trip and both times they gave me a "free ice cream" and "free meal" pass. I was also allowed to participate in any activities that they offered that day. Of course, it was just me (Lauren was not even with me ) and I was there to meet a few wish families that I have come to know on here...but it is a standing invitation for anyone that has been part of a wish trip to GKTW.

If I had our trip to do all over again...I would honestly spend time at GKTW...but not all of my time...

I would have done more character lines and fewer shows...more "long line" rides...taking full advantage of the button on those 5 short days. I would have also made a point to go to every VIP/MAW lounge there was (MK, 3 in Epcot)...because those things we can't ever do again.

But we CAN go back to GKTW and play there at any time.

I am hoping our next trip will be over spring break where we can go for 8-9 days...we will take 1 day at GKTW to swim and do activities (probably a Thursday since they have the Christmas party and we missed that!)...and the rest in the parks.
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Old 03-10-2009, 01:32 PM   #13
keetmommy
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Our issue with rides is Emma has a VP shunt so really can't do the roller coasters, we still will want to do some though with her older sister, that and our middle dd has 'issues' (which really are to long to type out but hated the rides last year, as a matter of fact somehow we thought it was a good idea to go on the Great Movie ride at MGM and she threw up she got so scared) she has come a long way in the last year and will hopefully be ok on some things this year. But I am sure she will want to meet more characters..It is a flukey thing that we are there 2 years in a row so I don't know if/when we will ever be back so we want to make the most of it too..
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Old 03-10-2009, 01:54 PM   #14
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Quote:
Originally Posted by keetmommy View Post
Our issue with rides is Emma has a VP shunt so really can't do the roller coasters, we still will want to do some though with her older sister, that and our middle dd has 'issues' (which really are to long to type out but hated the rides last year, as a matter of fact somehow we thought it was a good idea to go on the Great Movie ride at MGM and she threw up she got so scared) she has come a long way in the last year and will hopefully be ok on some things this year. But I am sure she will want to meet more characters..It is a flukey thing that we are there 2 years in a row so I don't know if/when we will ever be back so we want to make the most of it too..
That all makes sense.

I know you will enjoy your time!!! I really can't wait to hear about it!
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Old 03-10-2009, 02:14 PM   #15
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Great TR

I love your Trip Report already. Keep posting pictures. We all love them. Don't forget to ask questions, we all like to help.

Bill
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