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Old 07-16-2008, 08:55 AM   #1
PatMcDuck
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Make a Wish Trip to DisneyLAND, not WDW!

I am new to this pre-trip report thing, but here goes. Bridget is now 16 years old and is our "Wish Teen", not child. HA!

I will try and be brief. She was healthy until January 2007, when she came down with mono. But, she got sicker and sicker, very high fevers round the clock for days and days and weeks. I took her to the pediatrician 3-4 times in 2 weeks. Finally she was admitted to a local hospital in late Jan for dehydration and wonky blood test results. She was very sick and got worse during the week in the local hospital, requiring oxygen, chest tubes, and finally even a respirator. She was then transferred to CHoP (Childrens in Philadelphia) and diagnosed with a rare blood condition called HLH. She continued to go into multi organ failure, liver failing, on dialysis for kidneys, pancreas failed, still on respirator. But treated with chemo and on support, she recovered after 3 weeks at CHoP, and finished her 8 weeks of chemo. She was very weak, and lost her hair, but finally seemed to be on her way back in June 2007. In July, she got a sunburn, and got very ill with muscle pain (could barely walk) and a severe rash on arms, legs. We returned to CHoP, and she was admitted and eventually diagnosed with a rare rheumatological condition called juvenile dermatomyositis. Treatment includes high dose steroids and many other drugs. By September, she was improving but still ill. Pain in knees and hips was diagnosed as severe Avascular Necrosis, and required major surgeries on both hips in October 2007 and both knees in December 2007. After the October hip surgeries, she got a pulmonary embolism (blood clot in lung)as well. She had to be completely non-weightbearing for 5 months, using a wheelchair and sliding boards to transfer positions. She is finally somewhat recovered from the surgeries, and 6 months of gastrointestinal symptoms (daily vomiting, frequent diaherra, pain).

We applied to Make a Wish in November, after the first round of AVN surgeries. First Bridget wanted to go to a spa, and to be pampered. Sounded good to ME, but we had trouble finding a suitable location. Either they did not allow teens, of if they DID, they also allowed much younger kids. She decided to change it to DISNEYLAND in California.

More in the next post!
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Old 07-16-2008, 09:28 AM   #2
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OK, I swear I did not pressure the decision for Bridget's Wish to be a Trip to DL in California for her and her best friend. I only said she would be guarenteed to have a good time, no question. Bridget has 3 brothers, they are 18-20 and 22 years old. Normally Wish trips include siblings under 18. My boys still live home, but the older 2 work full time, and the 18 year old is handicapped and would slow us down, and this trip is about BRIDGET, not her brother. Besides, he also uses a wheelchair at the parks, and I can only push one adult sized kid around at a time. (Sean will get his own weekend at Disney in October). Since she is a TEEN, she would way rather bring the friend than one of these brothers, in a way. Just the age. My husband (her Dad) is living in Las Vegas for now for work, and he will come over and join us for 2-3 days. (We did not even tell make a wish this, it will be on our dime, he will get a room and what he needs on his own, our decision).

So, it seems like MAW DL trips are handled a little differently than MAW WDW trips. We were contacted by the local office about 2 months before our dates, and they booked the flights from NJ to John Wayne Airport. Direct flights! And they said they will provide a limo to and from the airport. So, we know the flights and the dates, Aug 11-17. Coming home they offered us 2 different flights, and let me pick. I picked the one landing here at about midnight, vs one landing here at 3am (EST). They asked if we were interested in Knotts Berry Farm, and Medieval Times. I said no to MT, but ok to Knotts Berry. I asked about Universal, they said that was in a different MAW district in CA, but they would pass the request along. MAW in California will also book us a rental car. All information will be in our "itinarary" that we get 1-2 weeks before.

We will not find out WHERE we are staying until a week or 2 before we go! Her wish did not specify a Disney hotel, so I suspect we may be offsite? She may be using a wheelchair there, so I am hoping it will not be one that is a tram ride away, that might be tricky for me to fold it and lift it onto a tram. (I may call about that issue.) We did get the Universal passes, we were told, and they said they needed to be used Thur, Fri or Sat. (I was surprised about that, thought it would be M-T-W if anything!)

We have since decided to skip Knotts Berry Farm, we think. The girls want to take a day to see some LA sights, and to see the beach in the late afternoon evening. A sunburn can trigger Bridget into another flare, so we will not go to the beach for a day. She wears alot of sunscreen every day. I thought maybe I would take them for lunch to the Disney Hyperion theatre Soda Fountain place, then drive a little bit. ( I should bring the GPS from home I think! ) I drive in NYC, Philly, etc so I am not too worried about the Freeways, and I have been to CA before many years ago.

We may do Universal on Saturday, so Bridget's Dad can come with us.

I have NO PS for any meals, and I am worried about that. I will try and make at least one. I was thinking of the Ariels place in California Adventure. I am clueless about DL. I feel very odd not making any of the plans. I have heard that for the DL trips you get a 2 day pass. I hope to stretch that to a 3 day pass, since Bridget will tire earlier than most guests, and she has to avoid too much sun exposure. The parks will be open late, so I think we will not be up early, we will be staying out late and sleeping in. Another WEIRD thing for ME to do, but it is HER trip this time.

She had a GAC pass the last time she was in WDW, and I will probably get one again this trip. I will try and remember to bring last years along from WDW. (Last trip there we had 2 kids in wheelchairs, we were quite a sight!)

Oddly, she may not need the wheelchair at times, and she might look like a reasonably healthy MAW kid. But, she has very damaged skin that is pretty obvious from the former steroid weight gain (she has lost 40+ pounds now, and is normal weight again). She has weakness from all that orthopedic surgery, esp in her hips.

I am SO grateful to Make a Wish for this trip, she is so excited. All her friends are sort of passing her by a little with PT jobs, driving, and she missed most of the past school year. She will catch up, but this trip is SUCH a gift, and it is coming at the right time. (She tried to push out the dates for it so she would be walking again for the trip.)

Thats it until I get more information. (I think I will call and ask for them to keep us close enough to walk to the DL parks, because of the wheelchair thing.)
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Old 07-16-2008, 09:41 AM   #3
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My goodness. What an ordeal for a teenager. Sounds like you are going to have a wonderful time though. I love disneyland but that is probably because I spent a lot of my childhood in California. Wonderful memories of that marvelous place. Hope everything is just the way you all hope it will be. Wouldn't it be marvelous if you could stay at one of the Disney hotels!

I'll be watching for more.
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Karlyn's Wish is Coming True
http://www.disboards.com/showthread.php?t=1868674
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Old 07-16-2008, 11:51 AM   #4
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Bless You

The ordeals we go through are so overwhelming. In the rear-view mirror, it we look at it and wonder how we made it through, but one day at a time, we do what we need to do for the child we love with all that we are.

What a touching and powerful beginning to your TR. I will post your link, Pat.

Blessings

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Old 07-16-2008, 02:04 PM   #5
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Pat - Thanks you for sharing your story. Your daughter has been through so much, and I know that you and your husband have been with her all the way through it. I am so glad that she will be enjoying a wish trip to DL, and have a chance to just be a teen having lots of goofy fun.

Although my children are younger (twin boys who will be 10 in Oct), I'd be happy to try and answer DL if I can. We went to DL for a family trip last December. One of our sons has cerebral palsy and he was in his wheelchair. Interestingly, his w/c got a flat early in the trip, we had no spare tube and Mark actually did the parks in his walker for a day and half! Everything is so much closer together. He walked from our hotel room at the Grand Californian, used the train between Lands and took lots of rest stops. It was a spectacular achievement!

There are other Wish family posters who also know DL quite well and I'm sure they'll check out your pre-trip and can help too.

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Sorry, there is just a Pre-Trip Report for Mark's Starlight Wish Trip:
November 2008: http://www.disboards.com/showthread.php?t=1883215
With a brief report on Mark's wonderful Wish Trip!
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Old 07-22-2008, 05:06 PM   #6
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Concerning Bridget's Make a Wish trip to DisneyLAND. Today I found out we will stay at Paradise Pier! I was excited, a Disney Hotel! They said 2 day pass to Disney Parks, and we had to go Tuesday and Weds. I hope to add a 3rd day somehow, at my cost. I am HOPING to add the 3rd day and only pay the difference from 2 to 3 days, not pay for a one day pass. We will see. They said Thursday was for Knotts Berry Farm; we think we will skip that and go into LA instead, and see the beach in the early evening. I am hoping to go back into the Disney Parks on Friday, and Saturday we will go to Universal. Bridget's Dad will join us on Friday night, and he has not been to Universal in Calfornia yet.

3 more weeks!
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Old 09-09-2008, 12:47 AM   #7
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Make a Wish Trip to DisneyLAND, not WDW!

Pre trip report: http://www.disboards.com/showthread.php?t=1887459


I never write trip reports, but I really wanted to do this one. This is a trip report about a Make a Wish Trip to DisneyLAND. I could not find one for DL before our trip, but I found many for trips to WDW. Bridget was 16 when we took this trip, in August 2008. First, a quick summary:

Bridget is my youngest of 4 kids. She was very ill in 2007, it all began a few months before she turned 15. She got mono, but got sicker and sicker. Admitted to a local hospital in central NJ for dehydration and high fever in Jan 2007. After a week, she was on a respirator and transferred out in a rush to Children's Hospital in Philadelphia (CHoP), critical condition, and went into multi-organ failure, needed dialysis, insulin, etc. Diagnosed with a blood disorder HLH (this is the abreviation.) Very rare. Treated with big doses of chemo, and she responded and began to get better. Turned 15 in ICU. After a month at CHoP, she came home. Lost her hair, was very weak. Seemed to be recovering, but got very ill again in July, back in hospital. Diagnosed with rheumatological condition, juvenile dermatomyositis. Oh yes, it's very rare. Treatment includes high dose steroids. She responded to the treatment, but then in 2 short months developed severe avascular necrosis (bone death) in both hips, both knees. Um, it's RARE to get this bad so quickly. In October she had a 10 hour double hip surgery, and began her 5 months in a wheelchair. In December, a 7 hour double knee surgery. Oh, after the hip surgery? A blood clot in her lung. Yes, it's rare for a kid to get one. She got out of the wheelchair in February 2008, (5 months with NO weight bearing at all!) in time for her 16th BD. Today, she is walking but has a lot of soreness. She lost most of the weight she gained with the steroids, but they caused bad stretch marks on her skin, over much of her body. She may have surgery next year to help with the damaged and loose skin. Her underlying condition is not curable, but it is treatable. Long periods of remission are possible. She is still having a hard time dealing with what she has been thru, and what she will have to deal with for the rest of her life.

In October, shortly after the double hip surgery, we heard about the Make A Wish Foundation. Of course, I had already HEARD of it, but never thought about applying for her. I looked into it, and Juvenile Dermatomyositis is even listed as an eligible condition. I applied online, and heard from a local volunteer pretty quickly. Bridget has 3 older brothers, and they normally do not include adult siblings in the Wish, and they are working or going to school, so they were out. Bridget's Dad is working in Las Vegas, and also would not come, so Bridget asked permission for taking a friend along as part of her wish. We were warned they usually do not approve this, but we could try. Bridget's first wish was to go to a spa, and get beauty treatments, and massages, etc. Well, that did not really work out, so she switched it to a trip to Disneyland in California. She has never been to the west coast, we live in NJ. ( She has been to WDW 5-6 times over the years, since we are DVC members. ) We heard pretty quickly that the trip was approved. Bridget asked for the trip to be in August, 2008. She wanted to be as recovered as possible from the double hip (Oct 2007) and double knee (Dec 2007) surgeries.

The volunteers in NJ were wonderful. They were not too used to dealing with DL; most kids ask for WDW. They asked for several possible weeks, we listed a few, all were in August 2008. They told us we would not hear much until a few months before the date of the trip. This was accurate, I think we heard about the dates first, and that was about 2 months prior. The local office books the flights, all other details are handled by the local office in the Anaheim area in California. Our office let us choose the flight home. They booked direct flights, Newark to John Wayne airport. They also arranged for a limo to take us to and from Newark airport! That was a nice touch.

At this point, we could not really get any information until 2 weeks before the trip. They did call and ask us about going to Knotts Berry Farm, Medieval Times. We said no to Medieval Times, maybe to Knotts, and also asked about going to Universal in Hollywood. They said it was a different MAW office in CA. that handles Universal, but they would try.



2 weeks before the trip, we begin to get more details. Much to my delight, we are told the hotel will be Disney's own Paradise Pier. The rental car is a mid size SUV from Avis, great for me, Bridget (wish kid, 16 year old teen), and her friend Crissy(age 17). We receive a package from MAW, and it has more details. The flight info, the limo info (some chapters give $$ for parking at the airport, I have been told). Also, we get info on the tickets. We will get (2) 2 day hopper passes for the DL parks. Passes for up to 4 people for a day at Knotts Berry Farm. Passes for the 3 of us to Universal Hollywood. The Universal passes are good for only Thur, Fri, or Sat. We were told we needed to use the DL passes on Tues and Weds. (I am not sure this was true, however, but we wanted to go the first 2 full days anyway.) They said to go to Knotts on Thursday, I think. We decided not to go to Knotts after all. We also received our expense check. This amount can vary, and I will not disclose it here. I thought it was generous, but food expenses are pretty high. (we did no character or fancy meals, but did eat at places like Rainforest, ESPN). I was undecided how to deal with the expense $$, buy a gift check card, use travelers checks? I ended up leaving most of it in an account that I had a Mac card, so I could just charge a lot of things. I did not want to lump it in with my household $$ and have to keep track of receipts. My goal was to try and live within that budget, except for stuff I bought for myself. TIP: To make it easier for the teens, who sometimes were off on their own, I later bought a park gift card for about $100 or so.

All right, first I called because we only were to get DL passes for 2 of us, and we were a group of 3. Our local MAW group was confused on this, and here is the scoop. DL will only give the passes for the immediate family on a MAW trip/ WDW would have given them for the friend, too. So, our local MAW chapter sent a check to buy a pass for Crissy, because they said they told us it would be included. We asked about having the 2 day pass expanded to a 3 day pass (at our expense). I was hoping to pay the difference between a 2 day and 3 day hopper. Umm, NO, you cannot do this with complimentary passes. We really wanted 3 days in the Disney parks, because Bridget gets tired and cannot tour for long stretches of time. And the sun can trigger her illness. I ended up buying Crissy a 3 day hopper, and 2 one day hoppers off Ebay. Which was DUMB, one of them did not work. I was ripped off, and had to buy one there at the park on our 3rd day. DL passes are very different from WDW, they expire for one thing. TIP: What I SHOULD have done, was bring some no expire passes from WDW that I have, you can use them at DL! You bring them right to the entrance and the CM there takes care of you. One day off a multi day WDW hopper is WAY less expensive than buying an additional one day hopper for DL. (and DL does not use the fingerprint scanners)

Anyway, here is what we decided to do:

Monday: arrive, check in, unpack, eat, swim, explore, rest up
Tuesday: California Adventure (Bridget picked the park to do first)
Weds: DL
Thur: see some of Hollywood, go to beach for sunset
Fri: return to DL/California Adventure
Sat: Universal
Sun: final shopping at DD, HOME

Soon I will add photos, as the trip report continues!

PS Bridget is the dark haired girl in the photos.

Last edited by PatMcDuck; 09-09-2008 at 01:17 AM.
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Old 09-09-2008, 12:54 AM   #8
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About a week before we left, I called Disneyland about our room reservation. I put in a request for a room facing the park, on an upper floor. Normally these rooms cost more, but I figured it would not hurt to ask!

On the day of the trip, a black stretch limo arrived at 5:30am! It was all lit up on the roof, like a starry sky. The girls were thrilled, me too. (it was still dark out). The flight left ontime, no problems, other than that it was longer than the Florida flights Bridget is used to. John Wayne airport is so cute, nice and small. We got the rental car without too much delay, and we were on our way! I am used to driving anywhere (I go into Philadelphia often, and have driven in NYC and with crazy NJ drivers my whole life). I thought the freeways were fine, and we found Paradise Pier Hotel pretty easily.

It was about 1 pm I think when we checked in. There is a giant Goofy in the lobby, and we saw Disney touches all over.

First they said the room was not ready, we said ok, we will go eat! They brought out the welcome package, that had all our tickets and trip details. They went over some other things, since I am not used to DL like I am WDW. Then they brought out a bunch of balloons, one was a big mylar sunburst. Nice. Then they said the room WAS ready, and I asked if we got the park view. They said YES, and it was the 11th floor, too! We were not able to add charging to the room keys, they do not do that at DL like they do at WDW. I like to add charging to the teens keys at WDW so they can grab a drink or snack....... so I bought them a park gift card, as I mentioned earlier.

We went up in the glass elevator, and when we got to the room, we were STUNNED by the view! It seemed like we could see the entire California Adventure Park!

We would see the C.A. rides going, and also see some things from DL like the Matterhorn, and Space Mountain. We went a little nuts about the view, and we never tired of it. After dark it was even better. TIP: If you go to PP hotel, PAY for the park view, worth every penny. In the morning , we could watch them testing the rides. We could see the ELP (Electrical Light Parade) CLEARLY, and we could crack the windows and hear it, too. ELP ran every night we were there. We could see the DL fireworks, but not perfectly. If I woke up in the middle of the night, I could see CMs driving trucks with supplies, buzzing about, cleaning, etc.

We were so hungry, we changed and went to get something to eat. A CM at the front of the hotel, RICH, volunteered to take us in the golf cart over to DD.

We had him drive us several times to either DD, or to the Grand California. He gives the funniest rides, he makes it like a tour of DL, a puddle is Splash Mtn, the parking garage is Space, etc. We were so hungry, and we went to the Rainforest Cafe. I have the Rainforest Card, so no wait for a table. We walked around DD a little. the weather ALL week was perfect. About 80, low humidity, and this was August. (we go to WDW a lot in August, so the contrast in the weather was dramatic to us). After this, the girls went to swim and relax by the PP pool. I decided to explore the Disneyland hotel grounds. They are so beautiful, the waterfalls, the koi, etc.



We took it easy, jet lag from the east/west coast trip and all. Bridget decided that she wanted to see California Adventure park first. She was refusing a wheelchair, said she would just rest often. We had vouchers for free wheelchair rental at the parks, but the truth is that you would be better off getting a (free) one at the Disney hotel. Then, you have it to use to and from the park, which is a nice little walk. (it is not like WDW with the busses that drop you off right in front). The monorail at DL is not currently reliable, either.
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Old 09-09-2008, 12:58 AM   #9
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OK, we grabbed some breakfast downstairs to eat in the room. We did this each day, we were fine with cereal, croissants, etc. We headed over to California Adventure, via the entrance in the Grand Californian. We were still on east coast time, so we were early. We got in the park, and headed to Soarin'. It opens early, or so it seemed. We had the MAW Guest assistance pass. We discovered that this is a very special pass over the next few days. TIP: If you extend your trip beyond the 2 days that DL gives you, go to Guest Services for an extended MAW GAC pass. It will have the same codes for the length of your MAW stay.

We toured C.A.

Rode Monsters, Inc. ride. Tower of Terror. Midway Mania. California Screamin'.

Mailboomer.

The Stinger, the big wheel. I do not remember them all. The pass brings you to the head of the line. What a blessing, in the time it saves, and the strength it saves the MAW child. And, something else. It made Bridget feel SPECIAL, in a very concrete way. It was like, she went thru he**, and now she gets a BREAK, finally. The pass even takes you in front of others waiting with Assistance passes for other reasons. TIP: When the special assistance line is long, like at some DL rides, try and show a CM YOUR pass, make sure they SEE that it is a MAW pass. They will move you up to the front. Now, I may have felt weird doing that, but Bridget did not! She always showed the pass herself, at each ride. When there was a special assistance long line, she would show it and even say "I think I have more priority", or something like that. I sort of cringed, but it was true. I let her do it.

Anyway, we did the Grizzly ride last, and got soaked, and headed back to the hotel. First I think we ate at ESPN. More swimming for the girls, and exploring for me. This time I poked around the Grand Californian. I had been told that we could use the pool at the GC, that they allowed pool hopping within the 3 DL hotels. My key would not open the pool door though, but some one let me in (I was just taking photos). More on this situation later.

That night we returned to C.A.

We wanted to ride the rides there in the DARK. All rides are different after dark, esp. roller coasters. We saw the ELP, and then left the park.
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Old 09-09-2008, 01:02 AM   #10
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Another PERFECT weather day. It was Wednesday. Bridget is tired, but still wants no part of a wheelchair. We go over to DD to take the monorail to DL. Rich from PP hotel gives us another ride..... They swipe your pass and have security at the monorail entrance in DD. We get lucky, and get to ride on the new monorail RED. We could not ride in front, it is weird in DL. The people in the front do not have to get out! They refused. I said, in WDW they can't do that, lol. Rats, I probably wanted to ride in the front even more than Bridget. And how can people say this castle is ugly, or too small?? It is CHARMING!!!

We rode over to DL, and you get off the monorail in Tomorrowland. We headed right for the Matterhorn, since this is a NEW ride for us.

We immediately see how much more crowded DL is vs. C.A. We loved the Matterhorn. After this, we began to run into ride after ride closed/ broken down! Oh my. First, Space. Then Indiana Jones, Haunted Mansion, Pirates. Come ON, Pirates?? We got on Jungle Cruise, Splash, and ate some lunch. Backtracked to Indy, it was open. (great ride!) Back to Pirates, Space, they had reopened. Pirates had a really long line for special assistance pass guests, the longest we saw. Bridget pushed us up to the front, showing her MAW pass. It was after this that Bridget pointed out all the people in the DL park in walking casts/boots. VERY odd, they were not in wheelchairs, and were walking so well in these......... we questioned this amongst ourselves, it seemed suspicious. But, we saw far less people using the power wheelchairs, ECVs? compared to WDW. Interesting. We toured for while, the crowds wear you out, even when you bypass the lines. OH, before we left the park Bridget got very tired, and we visited the Wish Lounge.

It was very nice. As we left the park, we were able to get a wheelchair to take back to the hotel, from the park when we were leaving (free). We said, MAW kid, she cannot make it back to the hotel. We went back, but did return later to DL and rode some rides we missed earlier. We got out of there before Fantasmic though, so we missed that. It was so crowded and crazy, Bridget just wanted out. Back in the room, I was able to watch the ELP from the room, again, so I was happy.
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Old 09-09-2008, 01:06 AM   #11
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Thursday was supposed to be Hollywood day, but Bridget was just too tired. We returned the wheelchair to the park the night before, but we were able to get a chair from the hotel. Bridget wanted a day of rest.

We took it easy, then I said, let's go to the Grand Californinan pool. The kids went to the Paradise Pier pool first, and called me to say that they were told we were NOT allowed to pool hop. Hmm. When we checked in, some CMs told us to call if we wanted ANYTHING. They gave us the information of how to contact them. So, I called and said, I thought we could pool hop?? (Actually, another DISer who went to DL the week before us on a MAW trip had told me we could). They said, no, it was not allowed. But, then they said they certainly could arrange for us to pick up pass keys to the pool for the day! Hooray! The girls were happy it was all arranged,and they were not sneaking in. We walked over, and spent a few hours there. TIP: Do ask for little favors like this. It cost Disney nothing, and we went midday when it was empty. We did not ask for anything else, like meeting characters, etc. For TEENS, going to a nicer pool is a treat. (PP pool is ho-hum).

About 4:30 we headed down to Newport Beach, Balboa Pier. Easy drive, I had no idea where I was going. Parked in a big lot. We walked around some little shops, onto the Bay side. Then back to the pier, we ate at a diner on the end of the Pier. Called RUBY'S, I think. What a VIEW! We saw the sunset, and took so many photos.


Then back to our room with the view at PP.


Last edited by PatMcDuck; 09-09-2008 at 05:05 PM. Reason: it s ruby's not rosies!
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