Elsa's Wish Trip and GKTW PTR

[kalimom6]

Hello, I am new here. Before I get into Elsa's story, I just want to say, all of the wish stories I have read have brought tears to my eyes. You parents, and your children, are inspirations. When we were first told that Elsa could have a wish granted when she was 2.5, we were very surprised. She does have a syndrome that is life threatening if she is not watched. But we didn't think it would qualify for a wish.

Elsa was born 2 days after her due date at 4lbs 15oz. There was no inclination during pregnancy that something was wrong. She was totally floppy, no muscle tone, and couldn't eat. After some nurses came in and told us that I was induced 8 weeks early (I wasn't) a pediatrician came in and said that she is ordering blood tests immediately to look at her chromosones.

Sure enough, at 1 week old, she was diagnosed with Prader-Willi Syndrome. She is missing a piece of chromosone 15. The first few years of PWS is considered failure to thrive, as the low muscle tone creates many, many issues. Between the ages of 3-5, something switches in the brain and they think they are hungry all of the time. If left to their own devices, they could eat themselves to death (slow stomach emptying, therefore causing stomach to burst if they eat too much), and they could get very obese, even at a young age.
More in another post.....

 

[kalimom6]

Elsa finally got rid of her g-tube at 14 months, at 15 months she was diagnosed with scoliosis, at 18 months she started getting a growth hormone shot every day (to help with height and metabolism). At age 2 she started crawling, at age 2.5 she was able to walk with the help of a walker. Finally, at age 3, she was able to walk all by herself! At age 3.5, her scoliosis got bad enough that she had to be put in an upper body cast. She wore it for 9 months, then moved into a back brace, which she is still in now.

She has went to 2 years of special needs pre school and is now in Kindergarten. She is right with her peers except for speech, she has a long road ahead of her on that. We were asked again about her wish right before she turned 5 (her birthday is in June). So after much thought, we decided to pursue it. She told us she wanted to "ride on a BIG airplane and see a BIG fish." We submitted our application to the Montana Hope Project (run by the state highway patrols) in June 2012. We got the call in September 2012 that they were going to grant her wish to Sea World. We gave them some dates that would work for us and now we are waiting! We go to GKTW and Seaworld Dec. 1, 2012-Dec. 7, 2012!!

 

[kalimom6]

Here is our flight itinerary, it will be quite interesting with 6 kids!
Nov. 30: go 2 hours away where we are flying out of and stay in a hotel
Dec. 1: Flight leaves at 540am, arrives in MSP at 930am,
leave MSP at 1035am, arrive in Orlando at 245pm
Dec.7:leave Orlando at 617pm, arrive at SLC at 910pm,
leave SLC at 955pm, arrive at destination at 1138pm, go to hotel
Dec. 8: travel 2 hours back to home.

This is what we'd like to get to while we are down there:
Sea World (wish)
LegoLand
Aquatica (is that worth it in December? We are used to the cold)
Busch Gardens
The beach-either Atlantic or Gulf

We need to figure out what the good days to do them are. As a family we are choosing not to do Disney. Any advice?

 

[aym4Him]

Wow! Your little one has been through so much! I'm glad she is getting her wish granted!

I don't have much else to add except to say congratulations and I can't wait to hear more!

I'm not familiar with all there is to see and do in Orlando, but you could always hit Downtown Disney if you want to have just a taste of the Magic while you're on your trip.

 

[kalimom6]

Thanks Amy, I will be looking forward to your TR. It's coming right on up, I would be freaking out about now!

 

[kalimom6]

Thought I would post some pics of Elsa:

 

[kalimom6]

Elsa

 

[kalimom6]

Family vacation, that was at the Great Salt Lake.

 

[Lilfoot93]

What an adorable family you have! I am so glad that sweet Elsa gets her wish. I can't wait to hear all about her magical trip!

Jackie

 

[wiigirl]

You have a beautiful family! I wish nothing but a wonderful and magical trip for you!

 

[kalimom6]

What an adorable family you have! I am so glad that sweet Elsa gets her wish. I can't wait to hear all about her magical trip!

Jackie

You have a beautiful family! I wish nothing but a wonderful and magical trip for you!

Thanks! I am starting to get a little overwhelmed with this planning! This week is a busy week (Halloween). Next week Elsa has 2 major appointments: we travel 4 hours away, 2 states away, for a Shriners appointment, I am hoping she doesn't need another cast, then, the day after we get back, her specialist (endocrinologist) comes here to Montana from SLC. He is the guy that monitors every aspect of her life, all the way down to the food she eats. I dread his appointments because I know that one day he is going to tell us it's time to padlock the fridge Elsa's food seeking is getting worse and it's very dangerous. The week after that is Parent/Teacher conferences and I ahve 4 in school. The week after that is Thanksgiving, VERY glad it's my off year to host. Then the next week is pack so we can leave on the Friday Nov 30!
On a brighter note, after reading around on this board, I am starting to rethink our plans. I know the kids would love the fireworks at Disney, plus the Christmas atmosphere, and MICKEY MOUSE!!

 

[LittleEsmom]

Hope you all have a magical time in Orlando! Can't wait for more updates. We go for our wish trip in March.

 

[kalimom6]

As I am planning our road trip for next week (medical trip), my 8 year old asked why we only travel when there are appointments. We travel 10+ hours west for her sleep studies, 4 hours for her back doctor, and 2 hours away for various other specialty doctors. Amazingly enough, we do live in a bigger city for our state. Just not many pediatric specialty doctors.
Oh and I cant forget 10 hours SOUTH for our baby J's appointments. That was the Salt Lake City vaca this past summer. Our kids have had to deal with so many babysitters that this trip is for them too.
Baby J was born with Metopic Craniosynostosis, his front suture was fused at birth so he had a triangle shaped head. At 6 months old he had to have surgery, they broke his forehead, remade his forehead with plates and screws (that dissolve!). The newborn we fell in love with was gone forever (in looks). My husband and I were gone for a week with J, while the others stayed at home. Luckily my parents were able to stay at home with them.

 

[kalimom6]

Life sure has a way of going down the roads that are least expected. Reading all the news on hurricane Sandy makes me thankful for my family, speedbumps and all. Those who are on the East coast, you are in our thoughts.

 

[blessedmom4]

Elsa is BEAUTIFUL!!! Enjoy the planning, it goes TOO fast!

 

[kalimom6]

Thank you Blessedmom4. I love your greetings.

So I have a few questions;

Aquatica: should we be planning on that or wait and see. I read a post saying they were freezing the whole time and I think it was a Nov/Dec time that they were there. We'll be there the first week of Dec.

Also, Gaylord Palms ICE: Has anyone been there and do you think it is worth it. We live in MT so we are used to 9 degrees so that shouldn't be a problem.

What 2 could we do in the same day:
Sea World (wish)
LegoLand
Busch Gardens
Aquatica (if we decide to do this)

Or are all of those all-day parks? We aren't needing to consolidate but we also don't want to be disappointed that we planned for a whole day but didn't need to.

We are planning to spend most evenings at GKTW to get as much as we can out of it.
THANKS!

 

[newdrama12]

Thank you Blessedmom4. I love your greetings.

So I have a few questions;

Aquatica: should we be planning on that or wait and see. I read a post saying they were freezing the whole time and I think it was a Nov/Dec time that they were there. We'll be there the first week of Dec.

Also, Gaylord Palms ICE: Has anyone been there and do you think it is worth it. We live in MT so we are used to 9 degrees so that shouldn't be a problem.

What 2 could we do in the same day:
Sea World (wish)
LegoLand
Busch Gardens
Aquatica (if we decide to do this)

Or are all of those all-day parks? We aren't needing to consolidate but we also don't want to be disappointed that we planned for a whole day but didn't need to.

We are planning to spend most evenings at GKTW to get as much as we can out of it.
THANKS!

I love ICE! It is awesome! The sculptures are amazing!

Of the which two parks you could combine, the only option would be sea world and aquatica. LegoLand and Busch Gardens are 45 minutes a part of each other. Most wish families that I know, spend about half a day at SeaWorld.

 

[aym4Him]

Thanks Amy, I will be looking forward to your TR. It's coming right on up, I would be freaking out about now!

Yup!! I'm pretty much a wreck right now! What to pack? What to wear? What shoes won't give me blisters? Haha!! DH joked that I have a Y2K mentality!!!

 

[kalimom6]

I love ICE! It is awesome! The sculptures are amazing!

Of the which two parks you could combine, the only option would be sea world and aquatica. LegoLand and Busch Gardens are 45 minutes a part of each other. Most wish families that I know, spend about half a day at SeaWorld.

So Sea World isn't really an all day thing? Good to know, Thanks!

 

[Gina-Gina-Bo-Bina]

So Sea World isn't really an all day thing? Good to know, Thanks!

I would say SeaWorld is very much an all day park. A more-than-one-day park, in my opinion. Especially with six little ones.......plan for a day and a half there, at least.

You know what I would do? Plan for a morning at Gaylord Palms. Make it a Saturday or Sunday, and do the Shrek Feast for breakfast (meet Shrek, Fiona and Puss N Boots). Then visit the ICE! attraction. Then do gingerbread decorating and meet Gingy. Then go over and spend the remainder of the day at SeaWorld, assuming you would be devoting a full day to SeaWorld as well somewhere else along the way. Get the whole Christmas Gaylord Palms experience while you are there, and when you kids are such a perfect age to enjoy all they have to offer.

Your family is beautiful, and after all your wee ones' health struggles, it is wonderful to know that Elsa is being granted such a wonderful wish that the whole family will benefit from. Have an amazing trip!