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Old 10-28-2012, 09:39 AM   #1
kalimom6
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Elsa's Wish Trip and GKTW PTR

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.....
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Sarah, mom to M-10, L-8, G-7, Elsa-5(wish child), L-3, and J-17 months
Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012
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Old 10-28-2012, 09:48 AM   #2
kalimom6
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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!!
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Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012
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Old 10-29-2012, 11:03 AM   #3
kalimom6
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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?
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Sarah, mom to M-10, L-8, G-7, Elsa-5(wish child), L-3, and J-17 months
Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012
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Old 10-29-2012, 01:24 PM   #4
aym4Him
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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.
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Ethan's Magical MAW PTR (November 11-17; extending to the 20th!, 2012)

Shh! It's surprise! "Darth Ethan's Return to the Kingdom 2013" Pop Century November 11-19th
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Old 10-29-2012, 03:12 PM   #5
kalimom6
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Thanks Amy, I will be looking forward to your TR. It's coming right on up, I would be freaking out about now!
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Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012
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Old 10-29-2012, 04:31 PM   #6
kalimom6
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Some Pictures

Thought I would post some pics of Elsa:
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Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012

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Old 10-29-2012, 04:37 PM   #7
kalimom6
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Elsa
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Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012

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Old 10-29-2012, 04:45 PM   #8
kalimom6
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Family vacation, that was at the Great Salt Lake.
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Sarah, mom to M-10, L-8, G-7, Elsa-5(wish child), L-3, and J-17 months
Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012

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Old 10-29-2012, 05:37 PM   #9
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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
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Old 10-29-2012, 05:48 PM   #10
wiigirl
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You have a beautiful family! I wish nothing but a wonderful and magical trip for you!
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Old 10-29-2012, 08:42 PM   #11
kalimom6
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Quote:
Originally Posted by Lilfoot93 View Post
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

Quote:
Originally Posted by wiigirl View Post
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!!
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Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012
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Old 10-29-2012, 09:12 PM   #12
LittleEsmom
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Hope you all have a magical time in Orlando! Can't wait for more updates. We go for our wish trip in March.
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Old 10-30-2012, 05:45 PM   #13
kalimom6
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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.
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Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012

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Old 10-30-2012, 05:52 PM   #14
kalimom6
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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.
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Sarah, mom to M-10, L-8, G-7, Elsa-5(wish child), L-3, and J-17 months
Sea World/GKTW Dec. 1, 2012-Dec. 7, 2012

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Old 10-31-2012, 05:04 AM   #15
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Elsa is BEAUTIFUL!!! Enjoy the planning, it goes TOO fast!


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