MAW daughter with Rett Syndrome going to WDW!

[luvmygrlz3]

We are still very early in our planning, but we did receive the phone call that MAW did approve our trip for my DD17! We have 2 other DD (8 &4). This is going to be the absolute BEST trip our family could ever take. I am so excited!

We are still waiting on the Dr.'s "ok" so we can set our dates, so the dates are still pending. Any suggestions on good dates to go where the crowds are low? Our Rep suggested Jan. or Feb. I would agree but I'm nervous because we will not have any spending money for ourselves until our tax return at the end of Feb. early Mar. HELP!


Shelby (mom)



ETA:
First off I want to apologize for the delay in this PTR...I have had a lot of unforeseen circumstances come up...but I am back!!!! OK, We finally have all of the paperwork completed and received...now I am just awaiting dates!!! I am hoping the dates will be in either February or March. I am soooo excited and I just can't hide it!

Now, let me finish this PTR and tell you all a little about our family...


The crew:

I am 35 yrs YOUNG, currently working part time as a server and in College part time as well. I met my wonderful husband of 7 years, Travis, 15 years ago at our place of business and we fell completely in love. I never thought I would find someone to love and care for Khelsey and I like I felt we both deserved. Khelsey was only 2 years old at the time and her diagnosis was still unknown. Her Neurologist suspected Rett Syndrome when her speech other milestones totally regressed. At the time there was no genetic testing to be sure of the actual diagnosis. When I was pregnant with my 2nd daughter (Khelsey was 8), she started having seizures in her sleep...they were Grand Mal seizures and we could not get them to stop. After hours at the hospital and many drugs later, she was diagnosed with Epilepsy. The neurologist on call at the Children's Hospital asked me if I wanted to get genetic testing of Khelsey to see if she for SURE had Rett Syndrome. I had NO idea the genetic testing was now available! Of course I agreed and within 2 weeks her results came back positive. Rett Syndrome is a very interesting disorder, here's a link if anyone is interested... http://rettsyndrome.org/ She seems to have a milder form of Rett. She can walk, eat with full assistance (no feeding tube), smile, laugh, cry, etc. She cannot talk nor is she potty trained. She is mentally (according to testing) of a 6 month old with some higher ranges in different areas. Because of her inabilities to communicate, she tests much lower than what I think she knows.

She is so very special to our family. I would not be the person I am today if I had not had her. I call her my Silent Angel...She may not be able to talk, but her eyes can tell you a thousand words. She loves her little sisters (ages 8 & 4) and absolutely adores animals. She LOVES LOVES LOVES Disney EVERYTHING as well as Barney & Friends. That silly purple dinosaur has been a part of our lives for 15 years...I am really tired of him but whatever makes her happy makes me happy. As we await our dates for ever family trip (meaning we have never been anywhere together with just the 5 of us) and our VERY first trip to Disney...I would LOVE to hear all tips you guys may have! I look forward to getting to know each and every one of you!

 

[billwendy]

HI!!

That is so awesome you are going on a trip!!!! Woo Hoo!! you will all have so much fun!

If you are thinking about dining reservations, I think you should make the reservations as soon as you can. When we found out the dates for our trip, we didnt get the airline info until almost the week before we went!!!

I would definately plan some nights to be in the park, the fireworks and night time shows like Fantasmic and Illuminations are really cool!!!

 

[*Toadstool*]

Congrats on getting approved for the trip. Sounds like you have a wonderfully special family.

 

[ms_mckenna]

Oh I am so glad you were blessed with a Wish trip! I hope the dates work out perfect for you guys! So you have 3 princesses ? What a blessing! I am sure they are going to enjoy it!
I can't wait to hear more about your trip!

 

[bunny213]

I am so excited for you..I know you will all have a very special time..
we'll be thinking about you so keep us posted...

 

[AlternateEgo]

Congrats on your trip! Sounds like your family deserves your trip and Khelsey is going to love meeting the characters!

 

[Loodlow]

You must be getting so excited! If you are like me, planning is (almost) half the fun! We would love to see some pictures, and if you have any specific questions, those are easier to answer. Read some of the other wish trip reports, and you will learn a ton. I am a lurker, a pediatric nurse who just happens to love Disney! I have referred tons of my patients for wishes, but have never been on one, at least not yet. Subscibing to your thread to follow along!

Libby

 

[jessica52877]

What a sweet husband! Sounds like a perfect fit for you and Khelsey! Can't wait to hear more about the planning. Sometimes the planning is the best part!

 

[cogero]

With 3 Girls once you get your dates try to get a meal with the Princesses. We have a tradition of going to Akerhaus every trip.

 

[SueM in MN]

With 3 Girls once you get your dates try to get a meal with the Princesses. We have a tradition of going to Akerhaus every trip.

I agree. Akerhaus is wonderful.

Glad to hear your DD is getting a Wish trip. If you have an questions about touring WDW with disABILITIES, come on over to the disABILITIES Board. There is lots of information in the disABILITIES FAQs thread (post in my signature), but we welcome questions.

One of the young ladies who is in my DD's wheelchair dance class has Rett and there was another who used to be in the dance class who also has Rett. Both enjoyed the music and the movement.

I know you said your DD does walk, but many young ladies with Rett don't walk well enough for the distance at WDW, so you will want to look at a wheelchair. A wheelchair can also provide sort of a safe haven for someone who is becoming a little overwhelmed by all the stimulation.

Have a great trip.

 

[aboveH20]

I enjoyed reading your PTR. Like seeing snow for the first times, I've always thought going to Disney for the first time is such a special event you wish you could be a first-timer over and over again. Immerse yourself in the planning -- to me it's half the fun!

I got a kick out of your comment about Barney - that after 15 years he's overstayed his welcome. Barney was a little past my sons' ages, but I'm trying to imagine if we'd had Ghostbusters or Teenage Mutant Ninja Turtles for years and years. They do get old after a while don't they.

Welcome aboard! I look forward to reading more.

 

[Granna4679]

I am following along. So happy to hear you are getting a wish trip. It will be so much fun for all of you. Sounds like Khelsey is a remarkable child. I can only imagine how special she is to your family. And it sounds like you found a gem of a husband too! Good luck with the planning....and I second everyone else's suggestion for Akerhaus. It is the best place to see all of the princesses.

I would love to see pictures of your family if you want to share some.

 

[hollie1974]

Subbing!

Hope you get the dates that you want!

 

[VBAndrea]

Congrats on your MAW trip! If Khelsey is an animal lover I would see if you can do anything special at AK. My kids loved the petting area with the goats and sheep and the special talks on animals. I think Khelsey would respond perfectly to that.

And I agree with all -- Akershus is a great place to meet the Princesses. Have a wonderful trip!

 

[babynala]

Congrats on Khelsey being granted her wish. I know you will all have a great time. Can't wait to hear more about your trip as it gets planned out. Enjoy the palnning and don't worry if your plans change before or during your trip, everything works out in the end!

 

[tinytreasures]

can't wait to hear all about her trip

 

[Madisonsmom45]

How wonderful you get to make this trip as a family. Everyone must be so excited.
I think if time isn't of the essence, then take your time and plan things out.
You would want some spending money. It can be expensive for the little things that you might forget to pack, etc. We have historically gone in either August or the week after Thanksgiving. Both times are low season. We have never had any problems getting on rides, seeing the sights, or getting the dining reservations that we wanted. The Christmas decorations are beautiful, but it can be chilly and even with heated pools we didn't spend too much time swimming. August is a bit hotter, but most things are air-conditioned.
Enjoy your trip.....
Bonnie

 

[SallyfromDE]

Congratulations on Khelsey getting her Wish Trip. I believe MAW gives you spending money. I think others that have been on a trip can verify that. There is so much to do and love in Disney. I've been going for 22 years. And I just can't get enough. My favorite time of year to go is October. But with Kirsta's school, we go as soon as school is out, before the heat gets too bad. I can't stand to go in the summer. I've the first week of March. Not warm enough for me. But I can get by. lol! I don't know that I'd worry too much about crowds. Unless your concerned how they'd effect your Princess. You can most likely use the Handicap entrances.The Handicap board can help you with that.

Keep us up to date on details!! I love to plan.

 

[luvmygrlz3]

WE got our DATES!!!
We go March 3- March 9!!! Only 2 months away!!! OMGoodness...it's going to get here sooo quickly! My girls do not even know yet...they are still in school. It's nice to finally know a date...now we are just waiting on flight information so we can make arrangements for the days we arrive and leave. Our coordinator said she was booking the flights today...so hopefully we can get it quickly!!!

Akershus is a MUST in our house...I have to try to get my DH to agree...he's a little frugal with money. Shhhh...don't tell him I told you guys. haha

OMGoodness!!! We have DATES!!!!! YAY!!!!

I agree. Akerhaus is wonderful.

Glad to hear your DD is getting a Wish trip. If you have an questions about touring WDW with disABILITIES, come on over to the disABILITIES Board. There is lots of information in the disABILITIES FAQs thread (post in my signature), but we welcome questions.

One of the young ladies who is in my DD's wheelchair dance class has Rett and there was another who used to be in the dance class who also has Rett. Both enjoyed the music and the movement.

I know you said your DD does walk, but many young ladies with Rett don't walk well enough for the distance at WDW, so you will want to look at a wheelchair. A wheelchair can also provide sort of a safe haven for someone who is becoming a little overwhelmed by all the stimulation.

Have a great trip.

Oh my goodness! I have never met anyone who has Rett (other than my DD of course). I wish we could meet someone. How wonderful of you to have that opportunity!!

Khelsey will definitely have a wheelchair for this trip...there's NO way we could do it without one. She tires so very easily and is becoming very unsteady as well.

Thank you all so much for the info! I have been posting on the disAbilites board too so look for me over!

Thank you for following me!

 

[luvmygrlz3]

Subbing!

Hope you get the dates that you want!

I hate to sound bad, but I have no idea what it means with "subbing". Can you explain please? LOL...Again I am sorry....