Emily's make a wish trip 2012

[luvmy3dds]

We are excited to announce that Emily is being granted a wish!!! She of course picked Disney world and we are hoping for this march!! Emily is four years old and suffers from Mitochondrial disease. She is a smart four year old little girl whose body is failing her on an molecular level. I am worried about the weather in march as Emily is heat intolerant, but loves to swim!!! she will have her cooling vest and we are hopeful her nurse will be able to accompany us. Her sisters katelyn age 8 and madison age 5 (we are hoping the trip will be the week of her birthday)
This is all so new to us and i am thankful for your advice and experience, I am a little overwhelmed right now and look forward to all of your help!!!!

i will post tomorrow!!!!

sandy

 

[luvmy3dds]

cleaning up my ptr:

 

[sweetmarieT]

Hey Sandy, Our daughter has Muscular Myotonic Dystrophy and has been granted her wish so we arrive at GKTW on Friday Feb. 3rd. I bet you feel as overwhelmed as I do! My big question is where does everyone find the adorable outfits.

 

[wakica]

oh wow, how exciting for you all
You will find lots of tips, advice and help on DIS so you've definitely come to the right place.
I look forward to watching your pretrip report

 

[luvmy3dds]

thank you, I have found myself sneaking on here at night, I do not want to ruin the magic!!! I agree after reading other trip reports I am extra excited!!! I love to match my girls and am already thinking up ways to do this!!! We are still waiting for our dates and that is really getting hard, If we get march it seems sooo close, yet November seems sooo far away! Have a great time in Feb, we are in favor of cooler weather as well
I am still trying to figure out how to post pics and do my sigmature, so far photobucket and the google one have not worked for me in spite of two hours of picking, resizing, saving, trying, creating a new account, downloading trying.... maybe tomorrow I will try again!!!!

 

[luvmy3dds]

i would like to introduce our family
Jeff also known as daddy is a hardworking family man who has always put his family first.
Sandy is a stay at home mom devoted to her children's care.

Katelyn is 8 years old.
She has severe food and environmental allergies,gastric reflux disease, barretts esophagus, eczema and asthma.
She is in girl scouts and plays softball.

Madison is 5 years old.
She was just recently diagnosed with
Mitochondrial disease complex IV,
she also suffers from EE (eosinophilic esophagatis)
Lactic acidious, chronic pain issues, gastric reflux disease,
food and environmental allergies, asthma,
eczema, bacterial lymphnodia, fragmented sleep disorder.
she requires medical formula, the mito cocktail, ten medications taken twice daily and glucose therapy.
She is followed at Dupont, Chop, and St. Christophers
She is a spontaneous free spirit who loves to make people smile

Emily is 4 years old
She has Mitochondrial disease complex I and IV,
dysautonomia, motility problems, cyclic vomiting syndrome,gastric neuropathy, bloat syndrome, gastric reflux disease,
hypotonia, tremors, heat intolerance, oral dysphasia, food and environmental allergies, eczema, malabsortion.
she requires molecular formula, the mito cocktail, glucose therapy, pulse ox, Gj tube dependent,
12 hour nursing, 12 specialist, constant care in the conservation of her energy. She has a nissen fundoplication.
She is seen at Dupont, Chop, Tufts floating in Boston
and St. Christophers.

 

[luvmy3dds]

 

[Moodyzblu]

Hi and to the Dis !

I'm Michelle and my wish kid is JAYDEN. We are going to GKTW in April and are VERY excited !!

You have a beautiful family and I'm very happy for your upcoming trip. I know how overwhelming it all can seem .. but like you ... after reading the others TR I feel not only excited but a little more informed as to what to expect !

 

[sweetmarieT]

You have such pretty daughters and they all deserve to go to disney and GKTW.

 

[wakica]

your girls are just adorable!!! Thanks for sharing the pics

I'm not sure why photobucket doesn't work for you - that's what I use. i can't remember if I'm mixing this up with another board I'm on but i think you have to change the IMG to img - just from upper case to lower case and the link should work?? Does that make any sense to you?

 

[luvmy3dds]

today started in the usual style of organized chaos, Emily made it to school only to last 30 minutes before i had to get her. She was just exhausted today. I put her on the sofa tucked her in and went on here (again ) I thought she was asleep when I announced to her nurse that the wish kid may be able to feed the dolphins at Sea world..... Then i heard a squeal, she is soo excited!!!! meanwhile, I lost my mom of the day award for the spoiler... who knows maybe that will motivate her that day!!! How do you hold all the excitement in ??? Each trip report I read gives me alittle more insight, I sure hope we get our date soon

 

[luvmy3dds]

While doing my ptr I have been getting very excited with all the possabilities of magic, however the reality of the rollercoaster of good and bad days my daughter experiences has me anxious to have a plan B in place, I guess a PTR-B: If you could only experience a few Disney experiences what would they be -- hands down favorites -- ???????

 

[wishin' on a star]

Hi Sandy! I just wanted to pop in to your PTR and say hello. Your girls are just beautiful. I'm sorry your family has to deal with so many medical issues. We went to GKTW in May 2010. My DD Catherine has a congenital heart defect along with many other anomolies that affect her day to day life. We had the most amazing trip, but I have to apologize, as I've never completed my TR!!

I think a plan B is a super idea. First thing to remember is that because of the GKTW button and GAC, you will be able to accomplish more in a shorter period of time. YOu really can pick the things that are the most important, and the magic will find you. The wish lounges are great places to rest if the girls need a break. GKTW is amazing, so a decision to leave the parks for the day and take a rest, will bring you back to the magic and parties at GKTW.

YOu asked on the main MAW thread about where to post things and ask questions...I think many people post in both places...or they post a link to their TR asking the question again on the MAW thread. Hopefully you'll get more replies that way, and maybe get some regular followers. Can you figure out how to post a link to your PTR in your signature? That definitely draws people over...they see your beautiful girls and want to learn more about them!!

I'm looking forward to following along as you plan. I can't wait to hear when your dates get confirmed!!

 

[Moodyzblu]

Hands down favorites for each Disney park for us ..

MK .. Pirates of the Caribbean and Mickey's Philharmagic.
AK .. Kilimanjaro Safari and the Maharajah Jungle trek.
DHS .. Toy Story Mania and Great American Movie Ride.
Epcot .. Soarin' and Test Track and Spaceship Earth.

We've never done the other parks and I'm sure we'll find some new favorites there .. very excited to find out !

 

[luvmy3dds]

thank you ladies for your replies i plan on working on my ptr more once I get dates, I do not want to get to ahead of myself.

Moodyzblu - hopefully we get our 1st choice of march then we can get down to some serious planning!!!

wishin' on a star - uncompleted tr????? sounds like a news years resolution to me lol. I didn't see many that are, its a big project for sure!!!

I have a full list of questions but my maw lady is on vacation and said I should hear from her in a couple of weeks, i figure I should wait until she calls me, afterall she is a volunteer. Meanwhile I can't seem to think about anything else. Its been so long since, wait we have never taken a family vacation!! To many appointments and unwell kids....... I am sooooo excited for some HAPPY!!!!!!

 

[Heluvsme]

Your girls look so sweet, I'm so excited for all of you to visit the World!!!

I love your idea for a Plan B, smart mom!!

If we don't go to a park, visiting the other resorts can be a lot of fun! Hop on the monorail and hop off at the various monorail resorts, heck, just riding the monorail can be fun! LOL!

If you're able to go to a park on a "bad" day, given your daughters ages, I would say...
Magic Kingdom.... Winnie The Pooh, Pirates Of The Caribben (unless the dark scares the younger ones), It's A Small World, a train ride around the entire park, and Philharmagic.
EPCOT..... Soarin is great, even for your 4 year old! Seeing the princesses at a character breakfast.. Akershus.
DHS.... The Playhouse Disney show, Beauty And The Beast show, Toy Story Mania
Animal Kingdom.... Kilimanjaro Safaris, Festival Of The Lion King!

Of course you can always spend a short time walking around Downtown Disney, visit The World Of Disney store, etc.

I hope and pray though that you have NO bad days, ALL good days, and that everyone stays healthy!!!! I can't wait to hear all about it!


Dawn

 

[luvmy3dds]

thank you for your insight!!! We are hoping for all good days as well!!! fingers crossed.... we always hope for the best, but the mom in me has to be prepared :O)

 

[melissa924]

We went to Disney last year and my daughter had mostly bad days My sister had rented a jogging stroller from https://www.magicstrollers.com/order/index.cfm it was so nice because it reclined and had a large sun shade for sleeping!(her wheelchair was not so great for resting) I know you can get free stroller rental at the parks but these were great for the bad times! She was able to rest and the other kids still got to see Disney!

 

[melissa924]

Your kids are so adorable!!!!!

 

[billwendy]

I hope that you are just able to enjoy the parks at the girls pace. GKTW is a vacation all in itself!! THey are at such GREAT ages for this!!! ( :