After much heartache and heartbreak

[SueM in MN]

sounds like things are going well and you have only a few days left before you leave.
hope you have a great trip and I'm looking forward to hearing how things went. I'd appreciate it if you post an update on this thread. I will make a link to this thread in the disABILITIES FAQs thread after you get back. It would be helpful to have feedback about your trip in the same thread.

PS I noticed you are staying at my home DVC resort -OKW.
There is a boat from the marina at OKW to Downtown Disney that is very nice and is wheelchair accessible. It's a great way to spend some time. Also, if your child likes music, the is a DJ at DD at the waterfront theater some nights. That is reasly nice. The wheelchair ramp is on the left as you face the water.

 

[Camster0307]

pampam - Don't know if you've left yet, but re: all the extra cords you were talking about having to carry around and how confusing it is to keep track of it all. I've been there - having to carry extra batteries, cords, tubing, circuits for my daughter's vent. What I've found very helpful is to put things in ziploc bags and label them (they make extra, extra large ziplcos now) and then put it all in one carrying case. Maybe that could help keep things a little more organized?

Hope you all have a great trip and please let us know how it all went when you get back!

 

[hematite153]

Glad to hear that everything arrived and is ready for use.

Have a magical trip!

 

[pampam]

pampam - Don't know if you've left yet, but re: all the extra cords you were talking about having to carry around and how confusing it is to keep track of it all. I've been there - having to carry extra batteries, cords, tubing, circuits for my daughter's vent. What I've found very helpful is to put things in ziploc bags and label them (they make extra, extra large ziplcos now) and then put it all in one carrying case. Maybe that could help keep things a little more organized?

Hope you all have a great trip and please let us know how it all went when you get back!

Thanks. Everything is now colour coded, numbered, and in labled plastic ziplock bags, so hopefully this will go well. I'm sure that after I get the hang of it, I won't need all the cues, but to start with, boy, do I need all the reminders I can get!

We leave tomorrow morning, and fly out on Thursday. Thanks all.

 

[pampam]

We're baaack!

Had a wonderful time, and made lots of memories.

My DD health was great the whole time. I'm not sure if it ws because she was in her happy place, or perhaps it was the low elevation, or something else, but we had a marvelous time. Where do I start?

We had a problem when we first arrived at OKW. They don't have transportation to the rooms for WC's. That was stressful. It was around midnight before we got to the room, and the room was wayyy in the back. Mind you, I got lost every day there it seems. Anyway, the next day we were moved to a room closer to the main area, and it was great after that.

Also, we only had one oxygen concentrator delivered to the room, and we neded 2. I phoned Lyncare, and they delivered another one. After that, it seemed pretty clear sailing.

Some highlights were
(1) the Hoop de Doo
I found myself taking pictures of my DD laughing her butt off, instead of the show.

(2) the character meals
We had dinner with Cinderella and her family (her step sisters were wonderful- right in character) at 1900 Park Fare. We ate at Chef Mickey's- wonderful character interaction. We had dinner at Liberty Tree Tavern just before the P&P Party. It was great too. We had lunch with the princesses in Norway. They gave us the pictures they took with Belle foir free. That was great. By the way, my DD wore her Belle peasant outfit I made her, so that was probably why.

(3) The Pirate and Princess Party
Great. Worth every penny, even though we have annual passes. While at WDW my DD really wanted a princess dress. Although she is tiny, the dresses were too small in the bust. Finally, I had an idea. I bought her a Snow White dress, split it up the back, leaving the neck and waist intact, taped it with duct tape to prevent unravelling, since I was low on sewing supplies, and sewed the cape in place, covering the split. She was sooo happy. She wore it quite a bit. Anyway she wore it to the P&P Party. Since we had this extra Belle peasant dress, I wore it. I gotta tell you, I felt really foolish, but anything to make my DD happy. I even wore her fall in my hair, to give me a pony tail, with of course a big blue bow above it. So these 2 princesses set off for their party. When we got on the bus, our driver pushed the button for the announcement that said for everyone to be on their best behavior- there was a Disney Princess on board. That was soo sweet. After getting my wrist band for the evenings activities, I said thank you, and the cm said "No problem. Anything for Alice in Wonderland." We didn't do much for attractions, just collected treasure, watched the shows, fireworks etc.

We came home on the 24th of Jan, and my DD wants to go back in Feb.

I'll follow with more later.

 

[MousekaMaddi]

fabulous!!!!!!! what a wonderful Mother you are looking forward to seeng pix of your happy princess!
Thanx for sharing your story

 

[SueM in MN]

sounds like you had a wonderful time.

As far as I know, none of the DVC resorts have bell service transportation for wheelchairs. The only transport is the bus (which the internal buses do go all over).
OKW and SSR are problems since they are large and separate buildings.

AKL, BCV, BWV and WLV are not a problem since they are a either part of or a separate building close to the hotel of the same name.

 

[alizesmom]

Sounds like it was a great time. I'm glad your daughter did so well. Karen

 

[P&L@WDW]

It sounds like you had a fantastic time! I'm glad it went smoothly (with a few exceptions.

After getting my wrist band for the evenings activities, I said thank you, and the cm said "No problem. Anything for Alice in Wonderland."

Just a note on this...Alice also wears a blue jumper/dress, blue bow and apron...yes, she's a blonde, and her hair isn't in a pony tail, but it could be an honest mistake!

 

[pampam]

Just an update. DD is doing great!! She hasn't had a collapse in well over a year. I don't know just what we are doing that is working, but we changed a few things, and we are more than thrilled. We keep a close eye on her blood pressure. 60/40 is quite common. When it gets that low we take it really easy. She has a drink of juice before she gets up, in case she is dehydrated or low blood sugar. She has phlebotomies every 6 months or so, and we took her off her digoxen, because that can cause irregular heartbeats.

I can't thank you all enough for all the support and good wishes!! Do I dare consider another trip? Yes. My DD loves to plan things, especially Disney trips. When we left, I was feeling very meloncholly, thinking I would never see this place again. I remember taxiing down the runway, thinking I will never see a palm tree again etc. Now, I'm truly considering bringing her back to her happy place. Once again, I thank everyone so much.

 

[SueM in MN]

Thanks for the update and glad to hear she's doing well.
Sometimes, you don't know exactly what you are doing that is working, but since it is, it's best to keep it up.

 

[BETTYDISNEY]

PamPam:

I have just been reading your story and it is truly wonderful. 1.) because your daughter got to go to her happy place and 2.) because you got to make more memories that you will truly treasure. Keep striving and dont give up that is all any of us who has illness affecting their lives can do.

 

[cmwade77]

If you can manage to do another trip, I say go for it, make her time here as enjoyable as possible, from what I have been reading she seems to really enjoy it. In my opinion, it could also be helpful to her medical conditions, as when my parents worked in the hospital, they often saw that the happier the patient was, the better their conditions became, so who knows, it may even be helpful to her.

 

[alizesmom]

Go and enjoy. Karen

 

[LindaBabe]

Thank you for the update - just thrilled to read your good news!

 

[hematite153]

pampam, I'm thrilled to hear that things are going well enough that you're considering another trip. I find disney trip planning almost as exciting as actually being on the trip, so, it sounds like you have lots of fun ahead of you.

 

[pampam]

Here goes. DD is doing great. We have another trip planned for Jan. 31 to Feb. 22. A week at ASMo, a week at ASMu, and another week at Pop. And boy, is she excited!! It's her happy place. She wants to plan all her meals, where she will sit in the plane, and so many things I have no idea about.

Anyway, a lady I hardly know is making a surprise cinderella dress for DD. When she told me about it I was just thrilled. She had made princess dresses for her 2 granddaughters, and said she will make one for DD. Just out of the blue. I never even asked her to or mentioned it to her. Of course I haven't told DD about it. She will be happy beyond words. I had told this lady's daughter, a friend of mine, about DD wanting a cinderella dress, and that I couldn't get one in her size. DD is tiny, and a childs size 12-14 will fit her, except for the bust. I don't sew too much, but I made her a Belle dress. I bought a blue dress at a second hand store. It was huge (size 24). took off the sleeves and lace, ending up with a blue plain sleeveless dress. Cut the neckline square, turning it into a jumper. Took it in as best I could, put a crinoline under it, a white blouse under it, a white apron on top and tied DD's hair back with a blue bow. Voila! a Belle peasant dress. She was happy with it, and wore it, but it still wan't a princess dress. She really wanted a Cinderella dress. All the princess dresses fit, except at the bust line. Mom to the rescue again. On our last trip, I bought a Snow White dress, took it back to our room and cut it from the waist to the neckline up the back. I had limited sewing supplies, so I edged the cut with duct tape so it wouldn't ravel. I sewed the cape down over the cut back. The cut opened up easing the dress in front, so it now fit, and the cape hid the repair work I had just done. DD was very pleased, but her heart still wanted a Cinderella dress. Snow White was the only dress with a cape, so it was the only one that could be modified. Now, this lady phoned today to tell me that the muslin dress is made. DD can try it on before she cuts into the blue brocade. I am soooo pleased. When she phoned, she identified herself. It wasn't untill then that I found out her name. So, we have to get together for DD to try on the muslin dress. I don't know what story I can give DD, so she doesn't suspect anything. This lady goes to the same meetings I go to , but a different congregation, so we see each other a few times a year, but I gotta tell you, I am just on What a special gift for DD!! DD is pretty quick to clue into things, so we are going to have a difficult time keeping this a surprise. Any ideas?

I tell you, I'm on an emotional roller coaster. DD hasn't collapsed. So many things seem to be going well, health wise. And now this phone call.

 

[livndisney]

I hope you and your daughter have a wonderful trip!

 

[mechurchlady]

So glad to hear an update and you never know where the angels are in life.
Hugs and good luck on your trip.
Merry Christmas

 

[Schmeck]

I'm so happy that you didn't have any problems with your adult daughter wearing costumes into the parks - usually adults are banned from wearing costumes, except to the hard ticket parties. How sweet that she's going to get a custom Cinderella dress!