Tuesday, May 26, 2009

Pics

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The California Trip Report

Sunday 5/17/09

4:30 a.m. The limo arrived in our driveway. We were all packed and ready. During the limo ride both James and Katie had the chance to play with the buttons and switches in the limo, turning lights on and off and raising and lowering the window between us and the driver.

We arrived at the airport, checked our luggage, went through security and proceeded to our gate. After finding the gate we got some breakfast.

The first leg of our trip was long but exciting. We landed in Phoenix, adjusted our watches, made the long trek to the gate for our next flight, grabbed some snacks and were ready to board our next flight. The second leg of our trip was very short and uneventful.

We were met at the baggage claim area by a Make a Wish (MAW) volunteer. She had a gift for Katie, helped us get our bags and accompanied us to the rental car office. After working out the issue or keeping the rental car for the post wish portion of our trip, we followed her to our hotel.

The Sheraton Universal Studios was very lush and elegant but the drive there was our first glimpse at the less than glamorous Los Angeles/Hollywood/Studio City.

When we checked in we were notified that there was a fax for us, we received it and opened it immediately because we knew this was the details to our lunch with Corbin. The fax said that we were going to be picked up at 12:15 p.m. the following day, by limo, and traveling to Burbank to the Elephant Bar Restaurant. Our room at the Sheraton was on the 17th floor and offered an absolutely beautiful view of the surrounding area and mountains. My biggest surprise about the area was the constant backdrop that is created by the mountains. Wherever you go in the greater LA area the mountains create a constantly visible backdrop.

After we settled into our room and checked out the view we realized we were hungry. We got directions and instructions from the concierge for how to get to Universal City Walk. For this first trip we took the shuttle from the hotel and we ate at the Hard Rock Café. Everyone enjoyed the meal and the atmosphere even though my chicken was under cooked and had to be returned. Everyone except me also found a great t-shirt.

Before retiring for the night, Steve and James had to make a trip to Target to get some supplies for Katie and also a swim suit for James since I had forgotten to pack one, and we took a brief dip in the neighboring hotel’s pool as ours was closed for a private party.


Monday 5/18/09

Monday morning came early for us because we were still on east coast time. When the hour was respectable, we went down and had breakfast at the restaurant in the hotel. We all ordered something but then shared with everyone else, it was very nice. We went back to our room to put on the finishing touches. We were ready way too early so we walked around the hotel a bit and sat in this cool cabana area in the hotel lounge. The MAW intern who was accompanying us arrived a bit early with the limo. We chatted with her briefly and then took some pictures at and in the limo before heading out to Burbank. On the way to the restaurant we saw the Nick Studios which was cool for James.

Once at the Elephant Bar Restaurant we took some pictures outside and with the elephant himself inside. We were seated at our table and then the butterflies really started flying for everyone. Katie had decided she wanted Corbin to sit across from her and chose a seat that made it hard for her to see people coming into the restaurant. We knew that our reservation party included Corbin and one other person so Katie was speculating that maybe he would bring his Dad since she had read that they are very close. I saw Corbin coming through the restaurant towards us and told Katie he had arrived. He came over to the table, greeted her immediately and offered a hug. Steve asked if he could take pictures and started snapping. He had in fact brought his Dad, David Reivers and everyone was introduced to each other. Everyone sat down and the conversation started and never stopped. Katie had brought along a list of questions and topics to discuss along with several pictures to be signed and we had bought a jump rope to be signed (due to a movie Corbin did called Jump In.) Corbin was amazing with Katie, he was attentive but included everyone. He let her talk and told great stories. He did not disappoint us in any way! He told the story of the first time he was recognized. It was a few days after the first airing of the first High School Musical, he was in Hawaii filming the second season of Flight 29 Down, he attended a large carnival with the rest of the cast and his Mom, walking around without a care in the world when suddenly girls were screaming and crowding him and it got so out of hand that the cast had to be wisked out of the carnival by security. David shared that Corbin’s Mom called him that night saying “you’ll never believe what just happened, we’ve got a situation here.” Corbin seemed honestly impressed with how much of a fan Katie had become. He asked if she knew his favorite food and when she said ricotta balls he literally said “Get Out! Most people say French fries and I love them too but really it’s my Mom’s ricotta balls.” He began speaking of a movie that he and his Dad are producing and starring in that is in post production and when Katie said the title he again was very impressed. They were both very genuine and generous. We were all so nervous after they arrived and having to choose our meals, David was kind enough to order an appetizer for us all to share. After we ate lunch (which was delicious by the way) we ordered dessert and the conversation just kept flowing. Later James said that we all could have sat there and talked forever. Steve, Corbin and David compared notes on New York pizza and sausage as they had previously lived in Brookyn. Corbin told us where his favorite ice cream places were which happened to be around the corner from the restaurant. We talked about the rest of our week in the LA area and they were both very excited for us.

As lunch wound down Katie took out her things she had brought for Corbin to sign. He was again very gracious and generous. In addition to the jump rope Katie had a packet of pictures of Corbin. She asked him to choose his favorite to sign and he said “I’ll just sign them all, if that’s ok with you.” He didn’t just sign his name he personalized each signing. Finally we opened the 2009 HSM calendar that the MAW chaperone Tina had brought along as a gift for Katie. First, he wanted to sign her birthday month and coincidentally October happened to be the month with the picture of him by himself. He started by asking the date of her birthday and writing “Happy Birthday Katie Love, Corbin;” then he signed the picture.

After more than 2 hours David tapped Corbin and reminded him he was late meeting his trainer. He excused himself to call his trainer. When he was finished it was time to start our goodbyes. There were more hugs all around. Corbin hugged all of us, Katie, James, Steve and me. David hugged us all also. We took a final round of pictures and then Corbin and David left the restaurant.

We followed them out shortly thereafter and got back in the limo. Tina asked if there was anywhere else we wanted to go and Katie asked if we could drive by the Pinkberry and Cold Stone that Corbin frequents and had suggested we visit. They turned out to be in a courtyard type shopping center so we got back out of the limo and took pictures of both places and Katie got a small ice cream from Cold Stone, Corbin’s favorite flavor of course.

Not long after getting back to our hotel room the phone rang. I answered it and it was David, Corbin's Dad. He said that he and Corbin had enjoyed lunch with us and wanted to make our Disneyland trip even more special. He explained that he had called their contact at Disney and arranged for our park tickets and a tour guide. Needless to say we were thrilled and excited. He asked me to email him our contact information so he could forward it to Disney and of course we complied. He said we should expect a call from Disney to set up the details.

We took another quickish swim in the hotel pool after returning from lunch. Later we decided to drive down to the intersection of Hollywood and Highland Boulevards. We walked from there to Graumann's Chinese Theater, looked at the stars on the sidewalk, took some pictures. Saw the Hollywood sign and took a picture of that. By this time it was starting to get dark so we got dinner there in the center and then headed back to the hotel for the night.

Tuesday 5/19/09

MAW had arranged for us to go to Universal Studios on Tuesday so we walked over and had breakfast at City Walk and then went to Universal. There weren't too terribly many things that Katie and I were interested in doing there but we did go to the Animal Actors show and the studio tour. Katie wasn’t fond of the studio tour because of the simulated earthquake, bridge collapse and flood. After the tour we split up and the boys went off to do a couple of other attractions, Backdraft and Special Effects. Katie and I played some games, visited some characters and did some shopping both in the park and out on City Walk. After the boys joined us Katie had a caricature drawn that turned out really beautiful!

We had planned on finishing up with some Hollywood sites on Tuesday afternoon but since we had been disappointed with the seediness of the sites from the day before we all decided to leave the rest of Hollywood in our imaginations. We had dinner at an interesting open air restaurant just outside of Universal called Saddle Ranch Chop House. The kids got in the pool again for a while and we called it a night.

Wednesday 5/20/09

Wednesday was moving day. We had one last breakfast at the hotel, packed up our things and loaded them into the rental car. First stop was the nearest Avis rental car office so we could turn it in under the MAW contract and rerent it in our names. That turned out to be relatively painless. Then we drove down to Anaheim. It was too early to check in to our hotel so we drove over to the Disney parks and went into Disney's California Adventure.

We decided to go to the left upon entering the park into their Hollywood section which contained one of our favorites from Disney World, the Muppets 3D Movie. Our first only in California ride was the Monster's Inc. ride which was very cute. Then it was on to the Twilight Zone Tower of Terror, again Katie rode but was less than thrilled but the rest of us loved it. Then we visited the Disney Animation building which housed several interactive displays and attractions, one of which was a drawing class where you are instructed step by step in drawing a Disney character. James and I had done this on our last trip to Disney World and had drawn Goofy. This time we drew Grumpy. Then we had a snack and as we were headed to the Bugs Life themed area we happened to catch the High School Musical 3 street party/parade so we stopped to watch that. Once over in the Bugs Life area we found more Katie speed type rides. She and James rode just about everything in that area and enjoyed them. Then we were off to the Paradise Pier section of the park. We hit a few rides and played some games before it was time for the park to close for the night. On our way back to the parking lot, we stopped for dinner in Downtown Disney. Our original plan was to eat at the Rainforest Café (one of the least crowded places in Disney World) but the wait was almost 2 hours so we scooted next door for the 15 minute wait at the ESPN Zone. After a bit more shopping we were ready to call it a night.

Earlier in the day we had gotten a phone call from a Disney representative to give us the details of when/where/how to meet up with our guide. We were to go to Disney's Grand Californian Hotel and Spa, give the cast member at the gate house our name, they would be expecting us, they would park our car for us and we would meet the guide there at 9:00 a.m.

Thursday 5/21/09

Obviously we were all very excited to get going on our last two exciting days in California. Our hotel in Anaheim had a free continental breakfast so we just grabbed something quick there each day, it wasn't the greatest but it worked. We arrived at "The Grand" as they call it, a few minutes early. In true Disney fashion they were in fact expecting us at the gate, and at valet parking. Within moments of our arrival our guide greeted us. Her name was Cathy and she was just lovely. We discussed our plans and goals and off we went. The Grand actually has entrances from the hotel onto the Downtown Disney area and also directly into Disney's California Adventure Park (DCA). Since we needed to get a wheel chair for Katie (she's having significant foot, knee and hip pain that we're going to begin assessing this week) and DCA wasn't open yet, we headed through Downtown Disney to Disneyland (DL.) We picked up a wheelchair and decided to hit a few attractions in DL until DCA opened up fro the morning. The Jungle Cruise there is dramatically similar to its counterpart in Orlando. However, the Enchanted Tiki Room show is completely different at DL. The one in Orlando has been rethemed using character birds from the Lion King and Aladdin, the one in DL is still the traditional show.

The proximity of the parks is really an asset. The entrances to DL and DCA are just across a walkway from each other. You are able to go through security just once and travel back and fourth between the parks quite easily. So once 10:00 came around we went across to DCA and picked up where we had left off back in the back on Paradise Pier. Steve, James and I rode California Screamin' and we all rode Toy Story Mania and absolutely loved it. The kids and I rode a small ride called the Golden Zephyr and then James and I along with Cathy road Mullholand Madness. We had snagged lunch reservations at Ariel's Grotto Princess character meal. The food was delicious and having the princesses come to the table is always fun.

After lunch we did a few more things and then headed up to the front of the park as we had made arrangements to see the 4:15 p.m. showing of the stage show Aladdin. It was cute but not as impressive as some other shows I've seen in Orlando.

We finished up a few things in DCA before heading over to DL for the evening parade. Since we had Cathy with us we were able to utilize the reserved seating area for the parade. Both kids were pulled up to dance in the parade (it's really more of a street party as it stops in 3 places throughout the park to "perform") which was fun for them. After the parade we headed to the Toon Town area of the park. I have to say this area was really wonderful and much more visually impressive than its Orlando counterpart. I wish we had pictures but it was getting dark and we weren't able to get any distance pictures. In order to backdrop the buildings so that they didn't appear to be up against a parking area, they have installed these high backdrops of cartoon looking hills. Since the whole areal is up hill from it's entrance point, those hills are visible directly below the sky so it's very seamless and visually just really cool looking. We went through Town Town, walked through the homes of Mickey, Minnie, Goofy, Donald and Chip & Dale. We rode the Roger Rabbit themed ride and took some pictures in one of the various vehicles scattered around the area.

After planning out most of our plans for the following day we called it a night.

Friday 5/22/09

Friday morning we met Cathy at The Grand again, took the monorail from Downtown Disney into DL and to the Tommorowland area. We rode Autopia (a fav for Katie), Finding Nemo Submarine Voyage, Buzz Lightyear Astro Blasters and Space Mountain (less Katie). We took a lunch break and then hit almost every attraction in Fantasyland and then the few things on the other side of the park that were of interest to us, Winnie the Pooh and Pirates of the Caribbean.

We finished going through everything once with lots of time to spare so we were able to repeat a few things that were important to the kids such as Autopia, California Screamin' and Toy Story Mania; we even caught the parade over in DCA while the boys took off to get James' caricature. Finally, our last event was to enjoy the fireworks show at DL. We had reserved seating for that as well and it was a very nice show and quite a nice way to end our time at the Disneyland Resort. After the fireworks we walked out of the park with Cathy and said our thank yous and our goodbyes and we headed off to retrieve our car from the valet at The Grand.

Saturday 5/23/09

Our final day was a full travel day. We had to get up early to get to the airport by 9:30 a.m. Since we weren't sure about the famous L.A. traffic we left ourselves 2 hours to get there and of course it only took an hour. While sitting to eat breakfast at the airport I spotted an actor from The Young and the Restless, Joshua Morrow. He was clearly trying not to be recognized and I couldn't think of anything to say that wouldn't sound creepy or corny so I didn't approach him. Later I realized that I had the previous week's Soap Opera Digest in my carry on bag and he happened to be on the cover. At least I was able to show my family so that they all said "oh yeah, that was definitely him." The flight home was the same as the one out there only in reverse and with a different stop over. As we walked onto the plan from L.A. to Charlotte, I recognized a member of the Fox Sports broadcasting team Chris Myers. After not approaching Joshua Morrow I couldn't let Chris Myers get away. I daintily nudged his arm and said hello. He happily said hello back and asked if I was going home or if I was on my way to the race. I had to sadly reply that I was going home… unless I could tag along with him to the race? He chuckled and I continued on to my seat. We landed a little late with that flight so I was stressed about having enough time to get to our connecting flight but we made it with a little time to spare even. The last flight was short, under an hour. The total elapsed travel time was about 7 hours but with the time change I'm not sure how long it felt.

When we got to baggage claim we called the limo company that MAW had arranged and we were picked up in a Ford Expedition limo as our last excitement from the trip.

We all enjoyed our trip quite a bit. Corbin Bleu was amazing and completely lived up to all of our expectations. It was definitely interesting to see some Hollywood sites; and getting to experience the Disneyland Resort is something I had never imagined being able to do.

I will try to get pictures up on here but in the meantime here is a link to a lot of them at Snapfish. Click here! You may have to sign up for a free membership to see them though, sorry.

Saturday, May 16, 2009

Final plans are made

It has been a crazy week. At one point we thought that maybe Corbin would cancel because we are the only family that has been able to arrange to travel to meet him; but, instead, it is going to be amazing. We will be meeting with him by ourselves. Katie will have his undivided attention (if he only knew the booklet of questions and discussion points she as.) We are thrilled. Make a Wish has been wonderful even though this has been one of the most rushed wish plannings they have been through at our local chapter.

We are getting picked up by Limo tomorrow morning (Sunday 5/17) and flying to Los Angeles. We meet Corbin on Monday but we won't receive the details of that until we receive a fax at the hotel that morning. We also have passes to Universal Studios for while we're there. When we leave the hotel that MAW is providing we will be moving down to Anaheim and spending a few days at Disneyland and Disney's California Adventure.

We bought a new camera just for pictures of this event and trip so I'll be sure to post those when I get back. I'll probably post them to facebook as I've heard that you don't need to be a facebook member to view pics but I'll decide that when we get home.

Monday, May 11, 2009

Exciting news!

I'm going to start with the best news. Make a Wish called Saturday night and providing I can clear up one small remaining obstacle we will be headed to Los Angeles next week to meet Corbin Bleu for Katie's wish. He is inviting all of the kids on the list to meet him (at least 6) to LA and the visit will include lunch with him. Katie is very excited.

I've been working on medical and other obstacles this morning. The newest infection is a brand new to us bacteria and is treatable with oral abx but the one that we're on isn't a top choice so we're going to switch to a new one tomorrow. Given our impending trip, and that we're going to be doing 14 days of oral abx, we're going to have the PICC line (long term IV) removed. It will be more at least 3 weeks from now that we would need to have it put back so that's a nice long break for her and her arm. It will mean an inpatient stay if we have to get another one but we've all decided it's worth it.

Both doctors are fine with her flying and traveling so far away.

The final small obstacle is that both kids are participating in a volunteer program at the library this summer where they read to younger children (there may be more involved will find out tonight.) The orientation is tonight and then the training is supposed to be next Monday but we'll be away. If we can take care of that at another branch then we'll be all set to fly away.

This is really a blessing for Katie, she's been really struggling with everything and so we're hoping this will be a thrill and a break from our surroundings.

We're also going to try to extend our time in LA so that we can go to Disneyland and see the sights in Hollywood.

Thanks for the prayers for my new niece Kacie, she's on the mend, was moved from the ventilator to just some supplemental oxygen this morning.

Friday, May 8, 2009

New problems, new bacteria

Katie was still dizzy this morning. We called Dr. M and she wanted us to be evaluated by our pediatrician's office.

LOVED LOVED LOVED the pediatrician we saw! (he’s new to the practice and we’ve only ever seen our regular docs and the nurse practitioner) He was thorough, not bewildered by her other issues, took them into account without letting them cloud his judgment, he heard her heart murmur (lots of people don’t hear it so I usually don’t mention it and did the same with him and then realized he was talking cardiac stuff so I should and he was relieved because he had heard it and thought it might have been new), talked to me like an educated parent.. seriously I cannot say enough about him! He said he still thinks that it looks like a medicine reaction, either to the cold, or we also increased her Ditropan dose to help with some bladder cramping, or a combo thereof. He said it doesn’t look like urosepsis (sepsis is when an infection through your whole body instead of being localized.) Based on her symptoms, he doesn’t think it’s anything neurological or a seizure or anything like that. He said he would further evaluate it if it lasted 7-10 days starting with an EKG, repeat echo (she had one in September or October of 08), and a tilt table test. While we were there he got the culture report from Lab Corp. The final culture result still isn’t back but they are saying it is a gram negative rod bacteria meaning it is not VRE or the most current bacteria which was a form of strep. The only time Katie has had a GNR bacteria it turned out to be pseudomonas which we used to call the Voldemort bacteria because it’s only treatable by IV meds (with the PICC it’s not so much of an issue but the drugs to treat it, if memory serves, are usually of the nephrotoxic type which might require inpatient level monitoring.) However, Dr. Kevin doesn’t think she has Pseudomonas because he would expect her to be substantially sicker especially given her immunosuppressed state. So, he wanted to start her on something broad spectrum that is likely to cover GNR bacteria. He called Dr. V who agreed with his choice of oral meds and asked that a loading dose of another med be added. I then said “ok but this is still pending sensitivities because if this is pseudomonas neither of these meds will cover.” He agreed but repeated that he doesn’t think it is pseudomonas…

So we have an order into peds at home to send us out a dose of Rocephin and we have oral macrodantin to start this evening. The other question hanging out there is the bigger picture, are we just going to continue to treat these infections as they come up or is there some overall plan to clear this up. I'm on the fence about whether I should call Dr. V's office to have that conversation now or just wait and let Steve have it with him in person when we see him next Friday...

Also, those of you so inclined, please say a quick prayer for my new niece Kacie. She was born a smidge early this morning and is having some minor struggles. I wish I could be there with her parents but I have to be here with my struggling girl.

Thursday, May 7, 2009

Down swing again

We had regular renal labs on Tuesday so we did a urine culture too (it's on the lab slip and it's just easier to do it rather than explain why we're not.) As soon as I saw the sample I knew it wasn't going to come back no growth. Sure enough today we got the preliminary report and it already shows greater than 100,000 colony forming units. It was processed by Labcorp and for some reason they haven't identified the bacterial and it is still a preliminary report even though it's been 48 hours. Peds neph called us and faxed the report to peds surg. I called peds surg but they don't know what the next step is. I think the nurse practitioner I talked to was going to email Dr. V. I'll call them again tomorrow since he'll be in the hospital.

Katie came home from school today because she was dizzy and weak. We were hoping it was a reaction to some OTC cold medicine but she was still dizzy and weak this evening. We're a little concerned but we're hoping that after a good night's sleep she'll be better. If not, we'll need to start trying to identify what's causing this new problem.