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Old 10-14-2009, 05:43 AM   #1
pipersmom
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Piper's Practically Perfect PTR..Wish Trip! 3/2-8...Upd Pg 126- TR Link!! Hooray!

Welcome to our journey! I’ve never written a PTR, and a month ago couldn’t have told you what a PTR is, so you may have to bear with me at times, but here goes.

The Cast:

Piper: my sweet, lovely, giving, caring 8 yo dd who I’d occasionally like to chuck out the closest window. Piper is the reason for this trip, but more about that in a few. I've chosen a sweet picture, and one I love for the irony...
[IMG][/IMG]



Gram: my mother, who would do absolutely anything for us (and has), that I admittedly sometimes also want to chuck out the closest window..probably more often than Piper.

Myself: 37 yo divorced nurse, cook, maid, personal entertain….err..ok, that list could go on forever, so let’s just say..Mom. Now..Piper isn’t quite old or strong enough to chuck me out a window yet, but between she and Gram, I’m sure the thought has been there.



The Backstory:
Since we’re still early in the MAW process, I figured I’d use the next few entries to give you all some background, and explain why this trip means so much to us.

Like a lot of women, I always wanted to have children. When the ex and I married I was 27, and we immediately stopped using any form of birth control. When two years rolled by with no bundle of joy, we were sent to a Reproductive Endocrinologist to try to get the show on the road. We were lucky that I had excellent insurance at the time, that would pay for every aspect of AI (artificial insem) except the drugs, up to a limit. After two unsuccessful attempts, we had just enough left for one more try. After that appointment, the Dr told us that the chances of me conceiving from it were less than 1%. When the testing window opened, and I took a home pregnancy test, I was floored. I had completely braced myself to give up any hope of ever getting pregnant. When I went to the Dr’s office, they were almost as shocked as I was..lol.

So the standard nine months goes by and Piper met the world. At birth, she was taken to be put on oxygen, she was only on it for a few hours, and we were told it was pretty normal. She was 9 lbs, 2 oz..21 in long, full head of hair..perfect little girl. After about six weeks of struggling with breast feeding, and Piper not gaining weight, her Pediatrician (who had been highly recommended to me) says: “Well obviously something in your body is just screwed up since you’re breastfeeding and she isn’t gaining weight. You just have to stop breastfeeding and switch completely to formula.” Now, news like this is not something easy to hear to begin with, without being told that it’s your fault. That cured me of that Pediatrician, and we switched offices. To add the cherry on top, when I didn’t make a return appt with him, he called Social Services and had them knocking on my door!

When Piper was three months, she started showing some respiratory symptoms..runny nose, cough, the usual. I took her to the new Ped, he told us she had pneumonia, and put her on the necessary drugs. When there was no improvement after a week, I took her to a follow-up, only to be told I shouldn’t expect to see immediate improvement, and that it could take 3 weeks to a month. So, another week goes by..still no improvement..we go back, and the Dr pretty much lectures me that he already told me that there wouldn’t be immediate improvement, the drugs are working, etc. So after another 4 days (by this point I was convinced she was getting worse), I call, and her Dr isn’t available but we can see a Nurse Practitioner. The NP walked into the room, saw Piper, and immediately went to get a pulse oximeter (measures oxygen in the blood). Piper’s sats were down to 85%. A “normal” number is 100%. Anything below 93 or so is not a good thing, particularly for a baby. I thank God for that NP..she immediately sent us to the Children’s Hospital in Cincinnati. Piper had a partially collapsed left lung. Needless to say, she was admitted, which started another journey altogether.


To be continued....
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Old 10-14-2009, 07:16 AM   #2
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Continuing...

Piper had been in the hospital for about a week and a half on IV’s (the line was in her scalp..at the time, I thought it was the most horrible thing I had ever seen, even though they said it was actually less painful there than it would be somewhere else) she still was not improving the way they thought she should be. After a few days of various tests, they brought up doing a test for Cystic Fibrosis. Ironically enough, as a teenager I had worked at a camp for children with special needs, several of whom had CF. As an adult for almost ten years I worked managing group homes for adults with MR/DD. Special needs were something I was more than familiar with. When the tests came back positive for CF I was both relieved (we finally knew what was going on) and heartbroken. No mother wants the thought in the back of her head that there’s a good chance she’s going to outlive her child. I gave myself 24 hrs or so to be upset, and started doing research. We spent the next two and a half months in the hospital, getting discharged just before Christmas.

We were relatively lucky for the next 5 yrs. Piper had another admission when she was just over a year old. We became accustomed to doing her meds and treatments, she was staying healthy. When Piper was 3, I divorced and moved back home (Virginia). We lived with Gram for about 2 yrs before getting into a place of our own. Piper started kindergarten without a hitch, and the school year went well even though she had started culturing MRSA in her lungs. Things started going downhill when Piper was in first grade. She was hospitalized twice for IV antibiotics. I became an expert at dealing with a PICC line and keeping up with IV schedules. Last year she ended up missing about four months of school between hospitalizations and being on home IVs. When she was admitted last October, we finally had a port placed, which was something I had been pushing for. She already missed the first four weeks of school this year, but at this point I’m no longer surprised when she has to go on IVs, it’s become our new “normal”. Right now her lung function is about 55%. We spend at least 3 hrs a day doing nebs and her chest vest to try to keep her as healthy as possible. Although I have always been super open with Piper about her CF it has gotten harder over the past year or so. She’s started asking more questions about things like her own mortality, whether she’ll be able to have a family, etc. When she has to do homebound schooling and such, I’m very grateful that she’s such an intelligent girl…when she starts asking those types of questions, well, not so much. There’s an essay someone gave to me shortly after Piper was diagnosed, which I think describes the journey of a special needs family perfectly…

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Make A Wish

We were told about MAW, and that Piper would qualify, a long time ago. My goal had been to wait until she was 10 or so to actually let her go through the process, thinking she would be old enough then to make a good decision. With everything she’s gone through over the past couple of years, I changed my mind. I contacted MAW a few weeks ago and am waiting right now for the ppwk to go through. We’ve talked about wish trips in the past, and there’s no doubt in my mind that Piper is going to ask to go to WDW. I found the Dis boards about a month ago and started lurking around, reading PTRs, and trip reports, and found the Wish Trippers Unite thread. I’ve learned so much already, and know that when the time for her trip rolls around, we’ll be as ready as it’s possible to be. I stay at home with Piper so that when she’s in hosp, I can be there. While it gives us an extremely limited income, I find the trade-off to be worth it, it just means that things like trips to WDW will only happen with help (like MAW), and makes me want to take full advantage of forums like this so she can literally have the trip of a lifetime. As we get closer, and have more details, I may just drive everyone crazy with questions, but I figure that’s okay. Ohh..and the fun part..Piper knows that I’ve started the process for a Wish trip..so we can go in two years *grins*. My actual hope is to be able to go in March, and I’m planning on surprising her with the dates at Christmas. Keep your fingers crossed that I can pull it off.


Quick Links!
Introduction Pt 1 & 2 and CF 101- this page (1)
Home Again!
The Wish Granters are Coming!
Meeting the Wish Granters!
An Interview with Piper!
Vest Pics!
Good News!
Surprise Update!
Paperwork is Signed!
Mini Thanksgiving Update!
New Haircut!
Christmas Fun!
Sometimes You Just Need a Man!
We're Getting Dates!!
Gingerbread House Comparisons!
We Have Dates!!!!!
ADRs!
My Funny Girl!
Progress & Random Kindness!
Christmas Pics!!
More Christmas Pics & Video!!

A New Year!! Ramblings
Exciting News!!
Here's the Plan, Stan!
Drs Appts & Fun!
SeaWorld Fun!
The Big Give Starts!
Happy Piper!! Not So Happy Mommy!
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Old 10-14-2009, 07:32 AM   #3
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Another Wish Pre-Trip Report!!!! Woo Hoo!!

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Old 10-14-2009, 08:29 AM   #4
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She is absolutely beautiful!
You are doing a wonderful job with her (and I'm sure that there are times they do want to chuck you out the window-mine do to ).
I can't wait to read more and I hope you get the dates you want. They were great about getting ours when I hoped for. We leave in 20 days ( ) so I've got to get busy but I'll try to keep up with your planning too.
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Gracie's (Mikayla) Pre-Trip report
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Boo's (Nikolas) Trip Report starts on page 7 post#99
http://www.disboards.com/showthread.php?t=2263732
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Old 10-14-2009, 11:10 AM   #5
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Great introduction and start to your report. The IV in her scalp brought back memories of my son when we was just born and that is where they placed his. I love the poem you posted. I would be glad to answer any questions that you might have if I can. Welcome!
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Old 10-15-2009, 05:17 AM   #6
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I can't wait to hear more about Piper's MAW trip, she's so precious ~ sending good wishes that you hear back from them soon!
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Old 10-15-2009, 11:25 AM   #7
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Quote:
Originally Posted by pipersmom View Post
Although I have always been super open with Piper about her CF it has gotten harder over the past year or so. She’s started asking more questions about things like her own mortality, whether she’ll be able to have a family, etc.
Wow, what a miracle Piper is! We were told we had virtually no chance to conceive either and because of our lack of insurance we found a different path to parenthood. Piper must have really wanted to get here.


Quote:
Originally Posted by pipersmom View Post
Piper knows that I’ve started the process for a Wish trip..so we can go in two years *grins*. My actual hope is to be able to go in March, and I’m planning on surprising her with the dates at Christmas. Keep your fingers crossed that I can pull it off.
What a fun surprise! I haven't told Tessa that we are going yet, but I have shown her some of the travel books and the Youtube videos. She always says she wants to go somewhere, usually CA to see Gramma at the beach. She's going to love this trip, maybe even more than Phoebe, which is why I'm trying to figure out how to explain to her that it really is for Phoebe. As a sister of a special needs child, she deserves some fun days too, but I want to make sure she understands why Phoebe is the star.
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Old 10-15-2009, 01:58 PM   #8
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Quote:
Originally Posted by maroo View Post
Another Wish Pre-Trip Report!!!! Woo Hoo!!

Now Maroo...how did I know you'd be the first one here?? Seriously though, thank you..hopefully I won't bore everyone to death.

Quote:
Originally Posted by 2specialkids View Post
She is absolutely beautiful!
You are doing a wonderful job with her (and I'm sure that there are times they do want to chuck you out the window-mine do to ).
I can't wait to read more and I hope you get the dates you want. They were great about getting ours when I hoped for. We leave in 20 days ( ) so I've got to get busy but I'll try to keep up with your planning too.
I'm so excited that you all are leaving so soon! I've been trying to keep up with everyone's planning too, it's almost as good as going yourself

Quote:
Originally Posted by kdzbear View Post
Great introduction and start to your report. The IV in her scalp brought back memories of my son when we was just born and that is where they placed his. I love the poem you posted. I would be glad to answer any questions that you might have if I can. Welcome!
Thank you..and I'm sure I'll be taking you up on the answers offer. I went to WDW twice as a kid, but that was a looooong time ago.

Quote:
Originally Posted by stacy347 View Post
I can't wait to hear more about Piper's MAW trip, she's so precious ~ sending good wishes that you hear back from them soon!
Thanks Stacy..I'm not the most patient person, and it's driving me craaaaazy.


Quote:
Originally Posted by yinyanggirls View Post
Wow, what a miracle Piper is! We were told we had virtually no chance to conceive either and because of our lack of insurance we found a different path to parenthood. Piper must have really wanted to get here.




What a fun surprise! I haven't told Tessa that we are going yet, but I have shown her some of the travel books and the Youtube videos. She always says she wants to go somewhere, usually CA to see Gramma at the beach. She's going to love this trip, maybe even more than Phoebe, which is why I'm trying to figure out how to explain to her that it really is for Phoebe. As a sister of a special needs child, she deserves some fun days too, but I want to make sure she understands why Phoebe is the star.
I understand what you mean about Tessa, I'll try to think about it, but with Piper being a "lonely only" I haven't had to deal with that sort of thing. The easiest way may just be doing it straightforwardly, telling her about Phoebe's conditions without going into too much detail. I started telling Piper more when she was about 3..very laid back approach, how it was important to do her meds and why, etc. Tessa may surprise you I pm'ed you before I read your response here, so you have one in your box too
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Old 10-15-2009, 09:03 PM   #9
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I forgot to add earlier that I love Piper's name. It is what I wanted to name my oldest, but my husband vetoed the name! She is beautiful and her name fits her!
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Old 10-15-2009, 10:03 PM   #10
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Cf 101

An Overview:
Cystic Fibrosis is the "most common" of rare diseases, with about 30,000 people in the US living with the disease. It's genetic, a gene must be passed from both parents. Even when both parents are carriers, there's only a 25% chance the child will have CF, a 50% chance the child will be a carrier, and a 25% chance the child will be unaffected. It causes unusually thick mucus due to a faulty salt/water exchange at the cellular level. The thick mucus can cause problems in the respiratory, digestive, and reproductive systems. Fifty years ago when a child was diagnosed with CF chances were good they wouldn't make it to their 21st birthday. Now, because of medical advances, the median age of survival is 38 years. Unfortunately, that number doesn't tell the whole story. There are "degrees" of CF, from mild to severe..some CFers may go their whole life with few hospitalizations, while others with a more severe form could be hospitalized or on IVs more often than they're not. Each lung infection leaves collateral damage, which builds up until finally a transplant is the only option. Digestive issues used to be just as complicated but have become somewhat better with the advent of pancreatic enzymes and better knowledge. There are still children who require g-tubes or tpn feeds, but we've been lucky in that Piper hasn't had weight gain issues since she was diagnosed and started on the needed meds.

A Day in the life..

Because of the amount of lung damage Piper has, and the amount of exacerbations (infections) she's had, we have a pretty rigorous schedule of treatments. On a typical school day we're up and at it by 5:30am to start her therapies. She uses a chest vest to vibrate her lungs for an hour, during which we're also doing 4-5 nebs and inhalers to help keep her airways clear. After the nebs and vest are done we spend an additional 10-15 minutes doing breathing exercises to encourage her to cough.

After her vest and nebs are done she does her am meds, she takes a special "super" vitamin, pancreatic enzymes, prilosec, ibuprofen, loratadine, bactrim, and azithromycin. One of her biggest thrills when she's in the hospital is when she has a new nurse come in to give her meds and sees Piper pop 5-6 pills in her mouth at a time without any problem. Usually we get the "mouth drop" effect just because most children really don't like taking pills. Piper is at the point now where she'd rather have pills than liquid..she's figured out pills usually don't have a taste and liquids can taste pretty nasty.

Once she gets home from school and has a quick snack, we're back to repeating her morning therapies, getting homework done, having dinner and doing the respiratory therapies once more before bed. I can honestly say we both absolutely live for the weekend and sleeping in until 7 or so. When Piper is on home IVs are all bets are pretty much off. Between the IVs and respiratory treatments she's pretty much hooked up to something all day. The nice thing is that now most IV meds are available in med-balls, which don't require a pump and can even fit into some of her pockets. They're pressure-fed so they can go anywhere she goes!


Next time: An interview with Piper!
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Old 10-15-2009, 10:09 PM   #11
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I forgot to add earlier that I love Piper's name. It is what I wanted to name my oldest, but my husband vetoed the name! She is beautiful and her name fits her!
Thank you We really wanted something different since we both have popular names and grew up having a lot of people in our classes with the same name. I also wanted something that really didn't lend itself to a nickname, lol..I'm sure it will happen somewhere down the road, but there aren't too many insulting things to rhyme with "Piper" (although we did go through the "diaper" thing with a boy in her kindergarten class)..sometimes you just can't win!
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Old 10-15-2009, 10:39 PM   #12
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OMG ok so while our stories started so differently they started to have a lot in common. 1st I must say Piper is beautiful and you are amazing and I know this because I just do!!!

I was going to post some of my story here for ya but I tell ya what im going to go ahead tonight and tomorrw and finish my ptr introduction! I will tell ya though our daughters have a lot in common it sounds like (schedule, meds, mine also only went the 1st week of school, pill poppers teehee, and brave and stronger than we can put into words).

Im so happy to read your ptr and I cant wait to hear more!! I can t wait also to learn more about piper!
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Old 10-16-2009, 05:14 AM   #13
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OMG ok so while our stories started so differently they started to have a lot in common. 1st I must say Piper is beautiful and you are amazing and I know this because I just do!!!

I was going to post some of my story here for ya but I tell ya what im going to go ahead tonight and tomorrw and finish my ptr introduction! I will tell ya though our daughters have a lot in common it sounds like (schedule, meds, mine also only went the 1st week of school, pill poppers teehee, and brave and stronger than we can put into words).

Im so happy to read your ptr and I cant wait to hear more!! I can t wait also to learn more about piper!
Thank you Woohoo..I've been keeping up with your ptr anyway, so I'll look forward to reading more
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Old 10-16-2009, 12:12 PM   #14
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Goodness!!!

I used to work at a camp for disabled children and we had a week for each different disability or disease, including CF.

Back then (this was years ago) they had to take a TON of enzymes with every meal, even a cracker. And they would put a bunch of those pills in their mouth. It was a major experience for me, too!

Lauren has a similar schedule - her stuff is stretching and just the extra time it takes to get junk done. But I can relate to what that looks like every day...so hugs to all of you!

I can not WAIT to see the interview with Piper!!
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Old 10-17-2009, 08:24 AM   #15
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Goodness!!!

I used to work at a camp for disabled children and we had a week for each different disability or disease, including CF.

Back then (this was years ago) they had to take a TON of enzymes with every meal, even a cracker. And they would put a bunch of those pills in their mouth. It was a major experience for me, too!

Lauren has a similar schedule - her stuff is stretching and just the extra time it takes to get junk done. But I can relate to what that looks like every day...so hugs to all of you!

I can not WAIT to see the interview with Piper!!
We just upped Piper's enzyme strength a few months ago so she's only taking 3 with each meal..before that she was taking 7 ! My favorite part is when she's drinking a bottle of water or gatorade and accidentally loses a pill in the bottle..lol..nothing like fishing out wet slimy capsules
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