Happy New Year 2011! Emily's MAW/GKTW Trip - The Final Gives!

[Emilyswish]

I came across you entries and am very interested. We are in the early stages of getting a wish granted and it seems we may be going on a Disney Trip.

Our son has a mitochondrial disease and is similar to your daughter clinically. He cannot hold his head up, is in a wheelchair, has epilepsy, CVI, etc.

Was your daughter able to enjoy the rides? We are wondering how much our son will enjoy them. Like you daughter he really enjoys music, lights, etc.

Thanks

Hi Josh,

When we first asked for Disney as Emily's wish, we really thought all she would be able to enjoy would be "It's a Small World", the Electric Light Parade, and Fireworks. But there were so many rides she was able to ride in her wheelchair, it was more than we could have ever asked for! And if you get to stay at Give Kids the World, everything there is totally accessible as well, like the Carousel, the train, and the Candy Land Playground.

In all honesty, there are many things she couldn't do or didn't notice that only our other children could enjoy, but just having her there with us and including her in the total experience was so worth it! She didn't really respond to the characters as well as I had hoped, but some of the great pictures we got made it look like she did anyway.

Any other questions, please ask! I sure hope you get to go!!

 

[MitoDadMO]

Thanks for the quick reply! I will tell my wife, she will be happy.

 

[hollie1974]

Welcome back!!

 

[4monkeys]

Welcome back. From the bits and pieces I have managed to read of the blog, looks like you had a good time! Can't wait to have time to read it through.

 

[marvali]

We got home last night around 11:15 pm! The kids (and Mommy and Daddy) were completely exhausted, but happy.

Now I'm unpacking, and doing more laundy. I kept the kids all home from school today because I knew an early wake up call would not go over well. The boys' ears are feeling better, DH went back to work, and I thought Em was better because she didn't get sick for the first time yesterday, but she just got sick about an hour ago. Poor thing. She's a trooper though.

DH completed his trip report on our BLOG, but I have lots more pics and probably some more stories to share so I'll be writing a trip report here too when I can (not to take anything away from him, because he did a great job!!).

We really did have the trip of a lifetime! I'm not even sure I'll have the words to completely express how special these memories will be for us, but I'll try. Thanks for sharing our story with me.

Aimee, sorry we missed you guys in Epcot! After a later night than planned at the MK the night before, we got up late and by the time we got checked in at Kidani, and finally headed out to Epcot, I'm sure you were probably already long done with your meal and headed out of the park.

So glad you had a great trip! Saw a little bit of your blog while I was away just long enough to determine your trip wasn't delayed by the snow in Philadelphia! When things get a little less hectic, and I'm back on routine, I will have to check out the rest of your blog and TR for details!

Marv

 

[Emilyswish]

Marv, I was looking for you, even though I wasn't exactly sure what to look for! I knew we probably left before you guys arrived anyway. We headed out of Epcot around 2pm or so.

 

[marvali]

Marv, I was looking for you, even though I wasn't exactly sure what to look for! I knew we probably left before you guys arrived anyway. We headed out of Epcot around 2pm or so.

We probably just missed each other, or you may have even walked right by me on the way out. I had to stop at Guest Relations and take care of something I forgot to do the night before when we picked up our Annual Passes. I probably wasted 30-45 minutes waiting in line there. Based on time stamps for some pictures I have, we probably arrived at the park around 2:00. I really thought you would be gone before then, so I had pretty much given up on seeing you when we got such a late start.

 

[that's nice]

welcome home!!!!!!! I peeked at the first few days of your trip on your blog. Are you planning on doing another report here or are you just using that?

Happy New Year!!!!!!

 

[Emilyswish]

We probably just missed each other, or you may have even walked right by me on the way out. I had to stop at Guest Relations and take care of something I forgot to do the night before when we picked up our Annual Passes. I probably wasted 30-45 minutes waiting in line there. Based on time stamps for some pictures I have, we probably arrived at the park around 2:00. I really thought you would be gone before then, so I had pretty much given up on seeing you when we got such a late start.

We had a photo pass pic done right near the entrance on our way out, so we probably did just miss you guys!! Bummer.

welcome home!!!!!!! I peeked at the first few days of your trip on your blog. Are you planning on doing another report here or are you just using that?

Happy New Year!!!!!!

Happy New Year! My hubby did a great job on the blog report, but I'm still planning to do a report here too. That way I can add some more stuff and lots more pics too! I'm going through our photo pass pics now. We got so many great ones, but the site has been bumping me off after editing about 5 pics or so. Just trying to go through as many as I can at a time so I can order the CD asap! Did you get yours yet?

 

[Emilyswish]

Most of you know that Emily was sick during our whole trip. She was vomiting - not very often, but almost every day at least once. My DH had some sort of stomach bug too, so we adjusted her feeding schedule, made sure she got enough to keep her blood sugars up and still make wet diapers, and tried to let it run its course as we have done for other bugs in the past. During the week, she didn't have any BMs though. Usually with a stomach bug she has many many dirty diapers so it was a little odd that she wasn't going (but kind of a blessing that none of her gorgeous outfits got ruined in a blowout!).

Since we've been back, she was still vomiting on Monday, and still no BM! (sorry for all the potty talk!) When I called her out of school again yesterday, her school nurse seemed concerned that she might be impacted or have a bowel obstruction. So I made an appointment for the pedi and he was more concerned that she was possibly dehydrated from vomiting and less feeds. So he sent us to the ER at CHOP for IV fluids. They didn't give her an IV because she didn't seem dehydrated to them, no blood work, but they did an abdominal x-ray and found there was no obstruction but moderate back up of stool in the intestines. They consulted GI who said that it was a post stomach bug issue where the bowel system slows down and suggested continuous feeds and suppositories as needed. It was a long, frustrating 8 hours in the ER, and they discharged us with a script for glycerine suppositories- which are over the counter anyway (and why they didn't give her one while we were still there is beyond me!!). She was able to go immediately after being given the suppository today, but the poor thing was in such pain because it was very large and hard which she is not used to since she's tube fed all the time.

I'm glad she wasn't admitted and it looks like its working itself out (literally) so hopefully she'll be back to normal by the weekend, and no vomiting today!!!

 

[ellenbenny]

Yay, glad Emily is starting to feel better. Loved the blog and can't wait to read your trip report too. It looked like a great trip with lasting memories. You have such a beautiful family!

 

[ms_mckenna]

I am so glad miss Emily is feeling better!

 

[Emilyswish]

Here are some close-up pics of the autograph books and the hair clips that I didn't get good enough pics of when I posted the original gives earlier in the PTR in this post - http://www.disboards.com/showpost.php?p=39243569&postcount=214

Autograph books - now completely full!!!

And the Minnie and Tink hair clips

Thank you again!

 

[Emilyswish]

Ann's last shift with us before the trip was on Christmas Eve and she gave us a very special Big Give gift!!

First, a really heart-warming letter - she is so sweet!!

Then we opened the box and found bows, amazing bows, and LOTS of bows!! In fact, she made at least one bow for every Big Give outfit the girls had previously received! Unbelievable! She is so talented!

Also, there were 2 knit hats to attach bows to for Em, and the Cinderella, Belle, and Tigger bows were on headbands. The sets of 2 bows were on elastics for pig tails for Brenna!

LOVE, LOVE, LOVE all of these! Thank you Ann, we are so lucky to have you!!

 

[tinytreasures]

glad she is feeling better
those bows are amazing I love them all

 

[Loodlow]

Those bows are awesome! And so glad Emily is feeling better!

 

[scouthawkk]

Those bows are super cute. And I love the idea of attaching some to knit hats for Em to wear. I bet that was cute!

 

[Emilyswish]

Those bows are super cute. And I love the idea of attaching some to knit hats for Em to wear. I bet that was cute!

The hats were very cute on, I wasn't so good about remembering to bring them with us to the parks though!

Those bows are awesome! And so glad Emily is feeling better!

Thanks, she went back to school yesterday and is now back to her normal feeding and pooping schedule!

 

[Emilyswish]

Ok, I have uploaded all of our pics from my cameras and GKTW (they give you a CD of all of the pics their photographers take while you're there - just be sure to memorize your villa number!!!) to the computer. There are about 1000.

I have viewed and edited all of our Disney Photo Pass pics (about 130, many duplicates) and ordered our CD (free CD and free shipping thanks to GKTW and MAW!!!!)

So now I am getting ready to upload our pictures to Photobucket so I can start our official trip report. I know there won't be many surprises since my DH did a trip report on the blog already. But there are definitely some things you haven't heard or seen that I can't wait to tell you and show you all about!


Trip Report coming very soon . . . . .

 

[Emilyswish]

Here are pics i forgot to post of Brenna and Em modeling the hats.