Evan is going to see "Bickey Bouse" on a wish trip!

[evsmama30]

Hi there!

I am new to discussion bpards, but thought this would be a great place to get some input from mamas and help to plan/prepare for my sweet son Evan's wish trip May 19th through 24th!

Evan is 6 years old and has Spastic Cerebral Plasy. He uses a wheelchair to get around, but is the happiest guy i know. he is funny, and handsom, and smart...the love of my life! he has to work really hard to do things that other people do, and life is tough for us since my husband wasn't up to the challenge and left us three years ago. i work part time at an AMAZING pediatric therapy clinic, for really good freinds of mine, so that i can be home when evan is not in school.

in january, we found out that evan had been selected to recieve a wish from the sunshine foundation. he is so into all things disney right now, that the choice was easy! it all went really fast and we were asked to attend a special fundraiser for the sunshine foundation village (partially becasuse ev is so darn photogenic!!) and we are heading down to visit in may! the people from sunshine foundation have been so wonderful, and we are happy to help in any way we can.

so now we are planning and saving money for our trip. it seems like sunshine is a little different from MAW in that it is a little smaller, and the stipend is not nearly as large as MAW. but, we are so,so grateful. and we have been asking for disney gift cards for his birthday and stuff. on april 8th, a lady from our local chapter of sunshine is coming to "present" evan his trip. he is going to flip out!

we get to spend 3 days at WDW.i have been there many times before, when i was married and had no kiddo, so i have a good idea about what the parks are like, so i have thought long and hard about what evan would like the most and i have decided we will do MK the first and last day and HS on the middle day. also, on the day of the fundraiser, we are going to head to downtown disney and shop and eat at t-rex. evan LOVES dinosaurs. his other big treat is that for his birthday, my mom bought us tickets for the CRT breakfast so he can meet his girlfriend Snow White i even found a secondhand "bashful" tshirt forhim to wear!

we are so excited, and i was just hoping to learn about practical matters of wheelchair accessibility, money saving ideas, and if anyone has any idea what to expect from a sunshine foundation trip.

thanks so much for listening to our story...hope to make some friends and learn lots...and as soon as i can, i will post a pic of evan!

 

[Corrine 1973]

First of all welcome to the Disboards and Congrats on Evan's Wish Trip. My family went on a Wish Trip (make a wish) in 2009 so feel free to ask any quesions you may have.

Are you staying at Give Kids the World? If so, they give you a special GAC card and a button to us while in the parks that is the closest thing to magic that you can find. You flash these little things at the CM's and they direct you to FP lanes and exits so there is very little waiting for any rides. And though you will be told during GKTW orintation that it doesn't work, it can also be used to get through the exit of character lines. You will get a similar card to us at Universal Studio's (if you stay at GKTW you will also get 2 tickets to this park and one for seaworld)

Plus I would also like to direct you to the thread Wish Trippers United (if you haven't already found it). It is a great place to find people who have already gone and have great advice or people who are making plans on their Wish trips. It is also a great place to find support from other parents who know the blessings and trials of raising children with medical needs.

Good luck, can't wait to read more.

 

[Corrine 1973]

Just noticed that your one step ahead of me and already foune the wish trippers site.

Haven't been on for a bit because of computer problems and am tring to catch up.

 

[evsmama30]

Just noticed that your one step ahead of me and already foune the wish trippers site.

Haven't been on for a bit because of computer problems and am tring to catch up.

thanks corrine for your help! these boards are a little overwhelming =) we are not staying at GKTW, which is why i am looking for a little more info. we are staying at the sunshine foundation's dream village. hoping that i can either find out some info on here, or at least help someone else later! thanks for your help!!

 

[evsmama30]

i got my ten posts in, so i can show you guys afew pictures of my love bug! i also read some more PRT's and have so much more to tell you...plan to work on that while watching my 2nd favorite Pittsburgh steeler on DWTS!!!

but in the meantime...
http://s1225.photobucket.com/albums...09640683093_1294758366_31199007_3651077_n.jpg

and...

http://s1225.photobucket.com/albums/ee381/evsmama30/ev/?action=view&current=readingthepaper.jpg[/

 

[billwendy]

He is SUPER CUTE!!!!!!! Congrads on your trip!!!

Does the sunshine foundation have any info for you on guest assistance pass or do they provide a pass like GKTW does? I know you can get a pass at guest relations that will help, but not sure if it allows you to cut to the fast pass lanes as many of the cues for lines are now wheelchair accessable.

There are some rides that he will be able to stay right in his chair! Im pretty sure the park maps let you know by a little icon if you need to transfer or not to enjoy the ride. You 2 are going to have so much FUN!!!!

As far as money saving - lol....its always hard! We bring in some snacks with us to help with cost and also bring in lemonaid mix to put into the "free" ice water you can get from any counter service place! Meals may also be big enough for you guys to share - he looks like an adorable little guy!!! Does he use a power or manual chair?

Im an OT at a children's hospital and I have actually gone to WDW with triplets whom 2 of them have CP and were in manual wheelchairs at the time. If there is any questions I can answer, please let me know!!!!

 

[brookerene]

Great photos! Evan is sooo cute!!!!!!

 

[mom2pixies]

Ah---could your son BE more handsome? Wow. He really is a little cutie. So glad he is getting his wish and will be enjoying dining with dinos and meeting his girlfriend Snow White. And, I hope he gets to stay in the Snow White cottage, too! Sounds like it is right up his alley.

What a great idea to ask for WDW gift cards for bdays! That will be perfect for him to buy some little gifties for himself.

Hope you don't mind if I tag along for your ride. I want to hear all about your trip and plans!

 

[evsmama30]

COLOR="darkslateblue"][/COLOR]

Once upon a time...

Hi, I am LeAnn, Evan's mom. In reading other PRT's i saw how people shared the story of their precious kiddos and how they came to recieve wish trips to disney. i tend to talk alot, so i thought i would break our story down into parts and then let you all know where we are with planning and lastly ask some questions. here goes...

i was married to my college sweetheart. we had a really nice life, had traveled lots, spent a lot of good time being just us, and were ready to add another member to our family. but it took some time. we had a really tough time getting pregnant. it took almost 18 months and i was just ready to start fertility medicine when i discovered i was pregnant with ev. we had a normal pregnancy and were so excited to meet our little guy. at 39 weeks, 6days, i went to the hospital to have evan. as a first time mom, i had no idea that what was happening to me (and therefore to evan) was not the way it was supposed to be. when evan was finally born, he was the wrong color, and i just remember saying to my husband "he's not crying". he did eventually dry, and my f-i-l was our pediatrician and he ordered him to the special nursery just to watch him. as that morning went on, things got weird. the resident told me evan was having some eye issues and they wanted to lifeflight him to pittsburgh children's hospital (we lived in washington, pa at the time). i told them i knew there was more to what was going on because you don't fly a child for an opthalmology consult!!
so, they told me that his bloodwork was way off. and they thought the eye movements may be seizures. the CHP nicu team came to get him. i had told my dr. that if they were taking him i was leaving (even though i had some third degree lacerations andthey wanted me to stay). but the nicu team checked him out and told me that REALLY he was okay and i should stay overnight and come in the morning. reluctantly, i agreed and my hubby went with evan.

as the day went on, every callfrom my husband got worse...:he is hooked up to an EEG, he is on 2 seizure meds, 3 seizure meds, he stopped breathing,he stopped breathing again, they can't control the seizures, lumbar puncture, treating him for sepsis, and finally at 8pm that night, he called, hysterical, saying that ev had stopped breathing and was on a ventilator. the only people i ever heard of on vents were dying...i called my friend and left my hospital room, flowers, balloons, and most of my stomach in that room and went to childrens.

wheni got there, my husband collapsed in my arms and took me to see our baby. even hooked up to all those tubes and wires he was the most beautiful thing i had ever seen. the single worst moment of my life was when those beautiful blue eyes looked up at me, filled with tears. i KNEW he knew i was his mama, and i wasn;t even allowed to touch him beacuse of the damn EEG machine.that image will never, ever leave my brain. nor will the words of the nurse as she told me that the seizures evan was having were "not compatible with life".

turns out evan had what is known as a hypoxic ischemic encepahlopaty, resulting in multisystem organ failure. it was critical for 4 or 5 days. but my tough guy was the campion of the nicu and he began to improve every day. when i finally knew he was going to come home i asked what we could expect long term. i was told that we could see seizure disorder, mental retardation, and mild to severe cp. i consider myself lucky because evan is smart as a tack and hasn't had a seizure since he left the hospital. all we got was CP!

 

[Blyssfull]

You have a very moving story.

And my oh my, he looks just like a little man. G'luck with your trip and planning. I look forward to following along.

 

[evsmama30]

when we got evan home, we really didn't know what to expect. we got him enrolled in early intervention right away and he was doing therapy 3 times a week by the time he was 4 months old. he also got glasses at 4 months. he had retinal hemmorhages in the nicu and almost lost a retina, so we knew he needed glasses and i didn'tsee a reason to wait

all of ev's milestones were delayed or didn't happen at all. as time went on, it became more and more clear that we were going to face CP. he didn;t ever hold his bottle or cup. couldn't get his head up on his belly, and he didn't sit till he was 23 months old. (he crawled at age 4 1/2 after six months of hippotherapy. i have all but given up hope he will walk, but a chair is okay with me) he was never ableto play independently beacuse his hands didn't work well. so all day i would sit in the floor or chair or wherever, hldong him up and using my hands as his hands so he could play and read and learn, even if his own body wouldn't help him. it was tough and it toook its toll. on me, on my husband, and ultimately, our family. instead of telling me he had a hard time with the fact that "all i did was take care of evan", my husband asked me to leave our home when evan was almost 3. it was horrible. the world literally fell down around me. but, i moved back to my hometown, bought the house next door to my mom, and started building a new life for evan.

in many ways, returning to wv was a blessing. i have the support of my family, especially my wonderful, amazing mom. evan has worked with some of the best occupational, speech, and physical therapist i have ever seen. and i was lucky enough to start working for them helping other families with special needs kids navigate through insurance and programs to get what they need for their children. i am fortunate to work only while ev is at school.

(you may wonder about the hubby...he is a really good dad from an hour and a half away. he sees evan every other weekend and i don't doubt he loves him. and he does his best to take care of evan. our relationship is as good as it can be under the circumstances).

my sweet evan is now 6 years old. he is in kindergarten and is learning his letters, numbers and sight words. he loves to read, and LOVES music. he does hippotherapy, OT, PT and St every week (some at school, others at my office). he is so funny and such a little nerd! he loves to go to the movies and concerts at little festivals and stuff. he plays baseball in the challenger league (and is actually pretty good). he is the apple of his gran's eye. he loves to play fetch with our dog, milo. he loves snow white, buzz lightyear, and justin bieber

evan uses a manual wheelchair at school and in the community. at home he scoots on his bottom or crawls. he uses a dynavox communication device to help people understand his speech (i say he speaks "evanese"). he also uses the dynavox to keyboard, since he cannot hold a crayon or pencil.

i often wonder what it would be like if he could feed himself a meal, or get his own bath, or even get out of bed if he woke up scared. but, i so love that because he has a hard time getting arounf he still loves to be close to me.

as for long term, even though he has asthma and some other medical issues, i know evan is going to be with me for a long, long time. i do worry about what may happen if he is never able to do some of those things. it breaks my heart to think of what it must be like to be trapped in that body and to know exactly what you want to do or say and not be able to do it. i worry about how long my body is going to be able to handle the demands his care puts on it. i grieve every time we lose another piece of "normal". i try not to think much past today, because that is when the whole thing becomes too much to handle.

but, here we are. alive. and happy. and getting ready to share a really magical time that evan will never forget. i am so lucky to have evan in my life. i am so proud to be his mama.

 

[mom2pixies]

Love your story. As lucky as you are to have such an amazing great kid, he seems pretty lucky to have you as his mama.

 

[evsmama30]

sometime last spring, i got a letter that ev had been nominated to recieve a "dream" from the sunshine foundation.

http://www.sunshinefoundation.org

at first i wasn;t sure if i should fill it out. i knew there were lots of other kids who were sick and maybe REALLY deserved something like this. but my mom told me that obviously, someone thought enough of evan to think he deserved it too. since i knew i had no way of ever giving him such a great gift, i filled it out.

then after christmas, we got a call and got to pick his dream. disney was pretty obvious. the kid sits and reads the disney animated character and princess encyclopedias for goodness sake. and he is the perfect age to still believe it is all magical.

as part of our trip, we will be volunteering at a fundraising race for the sunshine foundation. evan gets to meet the runners and hand out water and maybe get a picture or two

since it is just the two of us, and i need help, sunshine agreed to send my mom (gran) as part of our trip. and my stepdad (grumpy) is going too. we have to pay for him, but he is allowed to stay in the villa with us.

the last time i was at WDW was in 2001 when my husband and i took my folks as a christmas present. they loves it too. we are all sooooo excited

 

[evsmama30]

i have been planning and prepping.i have stayed at wdw twice, and my ex in-laws live in orlando. hubby and i used to go down once or twice a year and we would almost always hit a park for one day with our niece and nephews. so i am not too worried about knowing where to go/ what to see. most of my concerns are making sure evan gets to see and do whatever he wants to. it is HIS trip this time. my joy will come from watching him see all the magic

i have already purchased some pins on ebay. got him a lanyard and an autograph book and pen from the disney store so he would have it when we got there. as soon as i am done posting tonight i am going to order a book called "open mouse" about guests with disabilities. he got quite a few dollars in disney gift cards for his birthday. and also for his birthday, gran bought tickets for he and i to have breakfast in the castle with snow white on our first morning there! he is going to love it!!!!!

i understand that sunshine trips are a little different from MAW. we leave on thursday may 19th and return on tuesday the 24th. we chose what parks we wanted to visit and we will be recieving 3 single day tickets to disney.
here is my first bit of a schedule...although i am really trying to keep it pretty open to do what ev wants to do...

thursday may 19 - drive to PGH and Fly to orlando. check into dream village. go to grocery store. explore and maybe see ev's cousins.

friday may 20- Magic Kingdom. breakfast at the castle for evan and i.

saturday may 21st- sunshine foundation 5k in the am. downtown disney and dinner at t-rex. shopping (if the budget allows) and dessert at ghirardelli's

sunday may 22nd - hollywood studios (so we can meet buzz and mcqueen!). no definite pans other than shows and trying to catch fantasmic.

monday may 23rd - magic kingdom again. seeing whatever we didn't see day one and going back to his favorite things. hopefully night time parade and fireworks.

tuesday may 24th coming home

 

[evsmama30]

http://i1225.photobucket.com/albums/ee381/evsmama30/1stday5.jpg
this is evan and i on his first day of kindergarten.


http://i1225.photobucket.com/albums/ee381/evsmama30/baseball7.jpg
and this is at one of his baseball games

 

[evsmama30]

He is SUPER CUTE!!!!!!! Congrads on your trip!!!

Does the sunshine foundation have any info for you on guest assistance pass or do they provide a pass like GKTW does? I know you can get a pass at guest relations that will help, but not sure if it allows you to cut to the fast pass lanes as many of the cues for lines are now wheelchair accessable.

There are some rides that he will be able to stay right in his chair! Im pretty sure the park maps let you know by a little icon if you need to transfer or not to enjoy the ride. You 2 are going to have so much FUN!!!!

As far as money saving - lol....its always hard! We bring in some snacks with us to help with cost and also bring in lemonaid mix to put into the "free" ice water you can get from any counter service place! Meals may also be big enough for you guys to share - he looks like an adorable little guy!!! Does he use a power or manual chair?

Im an OT at a children's hospital and I have actually gone to WDW with triplets whom 2 of them have CP and were in manual wheelchairs at the time. If there is any questions I can answer, please let me know!!!!

thank you so much! i may pick your brain more when i figure out this borad stuff. just really wanted to share evan's story. have a great night!

 

[tinytreasures]

What a fighter you have. He sounds like he picked a perfect mom, who fights just as hard as he does to get what he needs.
Your plans sound great. We hope to be down there at the same time.

 

[evsmama30]

He is SUPER CUTE!!!!!!! Congrads on your trip!!!

Does the sunshine foundation have any info for you on guest assistance pass or do they provide a pass like GKTW does? I know you can get a pass at guest relations that will help, but not sure if it allows you to cut to the fast pass lanes as many of the cues for lines are now wheelchair accessable.

There are some rides that he will be able to stay right in his chair! Im pretty sure the park maps let you know by a little icon if you need to transfer or not to enjoy the ride. You 2 are going to have so much FUN!!!!

As far as money saving - lol....its always hard! We bring in some snacks with us to help with cost and also bring in lemonaid mix to put into the "free" ice water you can get from any counter service place! Meals may also be big enough for you guys to share - he looks like an adorable little guy!!! Does he use a power or manual chair?

Im an OT at a children's hospital and I have actually gone to WDW with triplets whom 2 of them have CP and were in manual wheelchairs at the time. If there is any questions I can answer, please let me know!!!!

thank you so much! i may pick your brain more when i figure out this borad stuff. just really wanted to share evan's story. have a great night!

 

[evsmama30]

What a fighter you have. He sounds like he picked a perfect mom, who fights just as hard as he does to get what he needs.
Your plans sound great. We hope to be down there at the same time.

thank you so much! maybe we will bump into you =)

 

[evsmama30]

thanks so much. he is cute, but he is bad!!! =)