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Monday, May 1
Julia certainly seems to be losing weight. Her clothes are fitting her better, and she looks better. We took some walks around our neighbothood this weekend, and she and her mom were doing some basic exercises at home tonight.
I have also discovered that this Diary has been selected as the HealthLinkUSA Site of the Day for today! Thanks!!
Wednesday, May 3
Well, the sunny and warm weather has finally reached us in New England. I was a beautiful day today, clear and warm, about 70°. Julia had gym class outside today. I warned her in the morning that she needs to make sure she has extra sunscreen, especially on her arms and face and neck. She said she "slathered it on."
Well, ti wasn't quite enough, apparently. She came home with a very slight sunburn - just a couple of small patches of redness below her eyes, and on either side of her neck. I don't think this will cause a problem, but it is a wake-up call for us. We're going to have to do remedial sunscreen application tomorrow morning.
Thursday, May 4
We watched Julia put on her sunscreen and found the problem - she's simply not using enough of the stuff. She was putting tiny dabs, about the size of a pea, on her fingers and working that in. We showed her she needs to use about 3 times as much for the same area of skin. She needs to apply it before she gets dressed, so she doesn't miss any spots. We also sent a bottle of sunscreen to school, with instructions that it has to be reapplied about half an hour before gym class or recess when they're going to be outdoors.
Today was Julia's first dose of Methotrexate at the new, improved level of 25mg. The injection went very smoothly, and Julia didn't feel any discomfort.
|Current Drug Dose:
||Folic Acid: 1mg/day
Sunday, May 7
This was a warm (some might say hot!), sunny weekend. Julia's rash looks slightly redder, but I'd also have to say that there is a bit less yellowness. Overall, it's still quite wonderful to see her skin so clear. She received her monthly Sacrament of the Sick today.
Julia stayed home this evening with a sitter while her parents went to an excellent performance of Carmina Burana. It was performed with a full orchestra, and the soloists were outstanding. I've performed this piece as part of the chorus while I was in college, and it's one of my all-time favorites.
Saturday, May 13
Today was Day 1 of our vacation to Walt Disney World!! We spent all this past week packing and preparing. We had to get up very early to catch a 7:15 flight. However, our ride to the airport DIDN'T SHOW UP!! We just packed our stuff in the car and drove ourselves to the airport. It actually worked out well, and it'll be cheaper, too. The rest of the trip to Orlando was actually very pleasant.
You're going to see a lot of links to WDWIG, the WDW Information Guide. This is a great web site. It's no-frills, but the content is excellent. I highly recommend it if you're planning a trip to WDW.
It was in the mid 90's today in Orlando, just beautiful! Our room in the Port Orleans Resort was ready when we got here at 11:30, so we unpacked our stuff then grabbed some lunch at the hotel, and headed out to Epcot. The park was extremely quiet this afternoon. We only had short waits on most rides, and the best ride today was called "Test Track" - very cool! The ride is almost a mile long and you go at speeds up to 65 MPH.
We're went out to dinner tonight at the Rainforest Café at Downtown Disney Marketplace. We're here to meet a family from Miami that is also dealing with JDMS. We "met" them through our regular chats. We've been looking forward to meeting them for a long time. They actually had car trouble and only barely made it at all!
It was a blast! Rainforest Café is great fun to begin with, and being able to sit down and share about this with someone who really understands was just a wonderful feeling. After dinner, we just walked around Downtown Disney and talked some more. All of us were exhausted, but we didn't want the get-together to end. We did eventually separate some time after 10, and we went back to our room and crashed. This day seemed to last a week long, but it's great to be on vacation.
Sunday, May 14
Happy Mother's Day to all you moms out there! This was a very special Mother's day for us. We've never been on vacation on Mother's Day (or Father's Day, for that matter) before. We did our best to pamper mom for her big day.
Today, we spent the whole day at Epcot. We got there when the park opened at 9, and immediately went to ride the Test Track ride again - twice! It's really a great ride. After that we went to Spaceship Earth, which is the ride that's in the "giant golf ball" that's the symbol of Epcot. It's specially decorated with a magic wand and a giant "2000" for Disney's Millenium Celebration. The ride is about communications through history.
We've made it a point to keep Julia in sunscreen. We're using an SPF 45, and she gets a liberal slathering first thing every morning. During the day, we've been applying more to her 2 or 3 times a day while we're waiting in lines. We're also encouraging her to walk in the shade, not just to avoid the sun, but to stay cool so she'll last longer without getting exhausted. I also carried a water bottle with us that I refilled at every opportunity, usually at water fountains. We went through the equivalent 5-10 bottles of water each day, and it really helped keep us from getting dehydrated.
I'd made reservations weeks in advance for "Food Among the Flowers," part of the Garden and Flower Festival. It was a surprise for mom. It was a quiet, indoor sit-down meal at the Odyssey restaurant right next to Test Track. They had a series of buffet tables all around, and flowers everywhere! It was very nice, the food was great - there were 5 tables of food to choose from, each with a distinct theme, and she loved it.
After that, we went on a "tour around the world". Part of Epcot is a section called the World Showcase, dedicated to a series of countries (Mexico, Germany, China, and so on) to celebrate their culture and it's people. We bought Julia a "passport" and she was supposed to ask someone at each country to stamp and sign it. We actually got through all the countries, except for the Millenium Village, but it was very hot, even hotter than yesterday, I think, and we were all pretty worn out by the end of the day.
One special thing that Disney did was have professional photographers in various spots arounf Epcot, and they would take your picture and send it to you for free. We stopped every time we saw one of these, and ended up getting 3 photos sent to us.
We had an early supper at the Japan section, at a Japanese steakhouse restaurant where they cook your food right at the table. It was a lot of fun, the food was excellent, and the chef was really entertaining. After dinner, we came back to our hotel and swam in the pool for a while. We were going to stay late and watch the fireworks, but the girls were both too tired for that.
Monday, May 15
We got an early start today and went to Animal Kingdom, which is Disney's idea of a zoo. We went there 2 years ago, about a week after they opened that park for the first time. They have added a lot fo stuff since then. Overall, it's full of display of animals, some common, but most rare and exotic. It's very well done.
The first thing we did was got on the Kilimanjaro Safari ride. They take you through a simulated savannah, which is populated by lions, hippos, gazelles (among many others), and about a zillion kinds of birds. It's really amazing to see these animals uncaged, sometimes just a few feet from our open vehicles! The trick is to go as early in the day as possible; the animals tend to seek shade as the heat of the day approaches.
Next, we wandered over to the Kali River Rapids ride. You're put on a round river boat that holds 10 people. You are repeatedly warned that "You WILL get wet - and you might get SOAKED!". They weren't kidding. We rode the ride twice - there was no line at all. The first time, we all got a little wet. The second time, Julia's mom & I got DRENCHED!! I literally took off my shirt and wrung it out. It was actually a good way to cool off and the wet shirts kept us cool for several hours. Julia managed to escape getting soaked. Lucky girl.
The other big ride here in AK is now called "Dinosaur". They renamed (it used to be "Countdown to Extinction") it because of the new Disney movie of the same name that opens on Friday. This is a very exciting ride where you are taken through a landscape that is full of dinosaurs - and some of them try to attack and eat you! It's a very wild ride, and Julia loved it, too.
In the center of AK is an amazing, gigantic sculpture called the Tree of Life. It's a tree that has hundreds of animal likenesses carved into it, all blending into one another. It's great fun to walk around it and name all the animals you see and can identify. There is a 3-D movie that's shown in a theatre under the tree (it's NOT a real tree) called "It's Tough To Be a Bug." You walk among the sculptures that make up the roots of the tree while you're waiting to get in to it. It helps pass the time to name all the animals you see.
The last thing we did as AK was go to the "Festival of The Lion King" show. This is a dazzling production with brilliant costumes and lots of music from The Lion King movie of several years ago. They really do a fantastic job with this show, easily one of the best in all of Disney World.
After AK, we came back to our room and changed clothes, and headed off the Downtown Disney again. We ate dinner at Planet Hollywood, the restaurant shaped like a giant globe. After dinner, we split up - mom wanted to go shopping, and Julia and I wanted to go to Disney Quest, a huge high-tech video arcade. Mom did just a little shopping, then ended up going into Pleasure Island, the area designed for adults to have some fun, and she listened to jazz music for a while and had a few drinks.
Disney Quest was very cool. In addition to traditional video games you could play, they had some very cutting-edge virtual games. They really give you a feeling of being in the game, with displays all around you and motion and sound to enhance the experience. We also took a drawing lesson on how to draw Minnie Mouse (Minnie turns out to be Mickey with a bow in her hair and long eyelashes!) We also rode a ride called CyberSpace Mountain. This is a "virtual roller coaster" which you can design - you pick the landscape, the speed, and so on. Then you actually ride it! They strap you in a cylinder that looks like a giant paint can. It's set up to move in three dimensions - it can roll, pitch up and down, and spin. It's amazingly realistic feeling considering you're strapped in a drum like that.
After we were done, we met mom and took a pleasant boat ride back to our hotel. It was a fun evening.
Julia is tolerating the sun very well so far. She is getting some red, bumpy skin in some places, and she has gotten a little pink in others. It's hard to avoid - we're putting on the sunscreen 3 or 4 times a day, but some rubs off, some sweats off. I'd say she's doing very well.
Tuesday, May 15
Since we were up so late last night, we didn't get an early start today. We went to the Disney-MGM park, which is full of stuff based on movies and TV shows. It was a very nice day here, not as hot as it's been, only maybe 90 today.
We started off at our favorite ride, the Tower of Terror. It's an elevator ride in a "haunted" building, and the elevator has gone crazy. Once you get in the elevator, the ride keeps slamming you down then up over and over again. It's wild! Mom seemed completely petrified beforehand, and wanted to back out of going on the ride until the very last second. I thought it was great!
Next we went to a brand new ride, the Rock 'n' Roller Coaster. The RnRC is an automotive-type roller coaster that's all indoors. It's really fast - it starts out with a 0-60 acelleration in 2.8 seconds!! Julia and I thought it was great, but between this and the Tower of Terror right before, mom was feeling a bit queasy. She was feeling the effects all the rest of the morning.
After that, we took a walk over to the Great Movie Ride. It's a slow ride through scenes from great movies, like Alien, The Wizard of OZ, and Indiana Jones. It's really very entertaining, and slowed the pace down a notch for us.
After that, Julia and I went on the Star Tours ride, which is based on the Star Wars movies. It's a motion-type ride, which means you sit in a simulator that shakes and rocks in concert with a video display. Mom sat this one out, and went to make us lunch reservations instead. We've ridden this ride every time we've been to Disney World, and it's frankly getting a bit old hat for me.
We did have the most delightful lunch! We ate at the 50's Prime Time Cafe. The decor is right out of 1950's television. You'd recognize the style immediately if you saw it - if you're old enough. Anyway, what really made it was our waitress, "Aunt Brenda". They treat you like one of the family back for a reunion, and it was a lot of fun.
After lunch, we went to the Beauty and the Beast show, based on the movie of the same title. They really put on nice shows at Disney! Before the show, they had an interview (boring, I thought) with a couple of celebrities that I've never heard of. Something to fill the time, I guess.
The last thing we did at MGM was the Backlot Tour. It's a ride that shows some of the tricks moviemakers use - special effects. They showed how they use water to simulate gunfire and bombs, and how tanks of water simulate a giant tidal wave. Then, we took a bus tour that showed some old vehicles that were once used in movies, like planes and motorcycles from Indiana Jones, and the miniature shuttle from Armageddon. Then we saw how they create fake fires and floods in a "canyon". It was very cool!
We left the park and The Girls took a 2-hour nap, then we cleaned up and went back to Downtown Disney Marketplace (yet again). We ate dinner at a great Italian restaurant called Portobello. Excellent food, but it was very noisy and crowded in there. After dinner, we went back to Disney Quest, all three of us this time. Mom was a good sport for coming along. We didn't get home until late again, almost 11:30, so we won't be getting anywhere early tomorrow.
Wednesday, May 16
Todaym we went to the Magic Kingdom park. We started in Tomorrowland, a futuristic section of the park with lots of space and future themed rides and attractions. We started out at one of our favorite roller coasters, Space Mountain. It has 2 tracks, and it's all indoors, and naturally it has an outer space theme. Mostly, it's in the dark or near-dark.
After that, we went to the Extra-Terrorestrial ride. It's story is aliens from another planet have transporter technology and they are going to use it to let someone visit their planet from Earth. At the last minute, they change their plans and decide to send an alien representative to Earth instead, but the trip goes terribly wrong. An alien beast is sent instead! The room goes dark, and the creature breaks free from the containment cylinder! It's very convincing, and a lot of fun.
Next, we took a liesurely ride on the Tomorrowland Transit Authority. It's like a train ride around that part of the park. It
even brings you inside some of the other rides, like Space Mountain. That was very relaxing.
We then went to a 360-degree surround movie (narrated by Robin Williams, who is a very funny guy) called Travel Through Time. In it, a robot has the ability to travel through time and ends up bringing Jules Verne, the writer, 100 years into his future to see our present. It was quite entertaining, and Williams makes you laugh a lot if you can catch all the jokes in his patter.
The last thing we did in Tomorrowland was a brand new ride. It was called Buzz Lightyear Saves the World (or something like that). It plays like a video game - one person control the spin of the car, and the other two shoot at enemy targets. They keep track of the targets you hit and add up the points. It was a lot more fun than it looked.
Next, we headed over to Frontierland. We grabbed a FastPass (which lets you get on the ride at a later time without
waiting in line) for Splash Mountain, then ate a quick lunch, just burgers and sandwiches. After lunch, we went to Splash Mountain, a roller coaster that has a Brer Rabbit theme and is a "You Might Get Wet" coaster, with dips that sometimes get you wet. I got pretty wet, or at least my right side did! It's one of the best rides - it's long and lots of fun.
Right next to Splash Mountain is Thunder Mountain. It's another roller coaster, but in the shape of a train and themed in the old west in the desert. Mom complained about the vibrations, but Julia was able to hold her hands up and off the safety bar for most of the ride.
Our last ride in MK was the Haunted Mansion. It's another indoor ride that shows you ghouls, goblins, and ghosts, but is a lot more fun than scary. I imagine some of the very little kids get scared by it. It actually stopped a couple of times inside the ride, but at least it was cool in there!
After that, Julia decided she wanted a portrait done of herself. They have a booth where artists will do a profile or full face protrait of you. Julia had the full face done, and it came out great. She sat very patiently while the artist worked, and the MK parade rode by. The parade was a nice diversion while she was getting the portrait done, which took about 45 minutes.
We came home and the Girls went in the pool for a while. Then we had dinner at the nice restaurant here at the Port Orleans resort, called Bonfamilles. It serves traditional New Orleans Cajun food. The service left something to be desired, but the food was very good.
After dinner, we headed quickly over to Epcot to try to catch a good seat for the nightly fireworks show, "Illuminations 2000". We got GREAT seats thanks to Mom, who camped out a great spot while Julia and I headed over to the Millenium Village to get her passport signed.
The fireworks show was fantastic! There was fire, and lasers, and huge fireworks, all beautifully choreographed to music. It's hard to believe they put on this show every night, but they do, and it's quite amazing.
We actually got back to our room early. After the fireworks, they had tons of busses to take the crowd home, and the line
moved very quickly. The fireworks show started at 9, and we were in bed by 10!
Thursday, May 17
Julia did get her Methotrexate shot this morning. We packed it in our carry-on baggage in a small tupperware container. I was worried that security x-ray would see the needle and give us a hassle, but we sailed right through. I carried a copy of her prescription with us, just in case. Anyway, the shot went like it always does, no problems.
We decided to go back to Epcot one more time. This morning it was almost chilly outside. Quite refreshing after the
heat we had earlier in the week. It warmed up nicely by the middle of the day, and was close to blazing again in the afternoon.
We started at the Universe of Energy, which is an entertaining ride that teaches about energy. We saw this 2 years ago, and it's quite good. One of the Cast Members (or CMs; people who work here) was from Massachusetts, and gave Julia some extra special attention.
From there we went to the Life Matters pavilion. It's a whole section about the human body; health, fitness, and other good stuff. The main attraction is a motion ride called Body Works. The story is that they miniaturize a carload of Guests and transport them into a body to pick up a researcher who is investigating the immune system. It becomes a rescue, with a last-minute, exciting finish, naturally. The pavilion had other fun stuff. Between that and the Energy exhibit, we pretty much killed the whole morning.
We grabbed lunch in Canada at their steakhouse and had a very nice meal. It was cool and quite, and the food and service were excellent. After lunch, we went to a 3-D movie called "Honey, I Shrunk The Audience". In it, a scientist ends up shrinking the auditorium we're sitting in and there are lots of convincing 3-D effects. It's a lot of fun! The last thing we did was go to Inniventions, which is a display of some computer technology. A lot of it is dated, to be honest, but it was a good way to pass the time.
We've been having a great time collecting and trading Disney pins. The deal is that some CMs are wearing about a dozen or so pins, and if they have one you want, they have to trade with you. We each have collected about a dozen pins and we've been wearing them proudly. I have no idea how many or which pins we're going to end up with at the end of the week, but we're having fun with this, too.
We're grab a quick supper here at the hotel - just a cheese pizza, and at $13, the cheapest non-breakfast meal we've had all week. Then we headed out to MGM Studios to catch the "Fantasmic" show there. Wow!! What a great show! We ended up getting outstanding seats, right in the middle and far enough back to see the whole thing. This show is way cool - there are fireworks, lasers, fire, fountains, and a recurring effect of projecting an image onto a spray of water. It's hard to describe, but it looked great. It was the classic struggle between good and evil, with all the Disney movie characters on both sides. A very entertaining half-hour show, with a funny half-hour pre-show show, to boot!
Disney handled the transportation excellently again - the show ended at 10, and as fast as we could walk to our bus stop, we walked onto a bus. We were home by 10:30. Good work, WDW!
I also have to say that despite all the walking and the lack of sleep, Julia is holding up excellently. She has energy to keep up with us even into the evenings, and she had hardly complained about being tired at all.
Friday, May 18
Today, we went back to Magic Kingdom. We started out with some favorite rides - we went back on the Extra-Terrorestrial ride (Julia loved it!). We then walked over to Toontown, which is where Mickey and Minnie live and we visited their houses. I got tons of pictures today. Then we took the WDW Railroad back over to Frontierland and rode Splash Mountain again. Then we took the Railroad back to Tomorrowland and had lunch at Cosmic Ray's Starlight Cafe.
After lunch, we walked through Fantasyland and back into Liberty Square and Frontierland on the way to Adventureland. We wanted to ride Pirates of the Carribean, but we saw the Jungle Cruise on the way. The wait for the Cruise was long, so we grabbed a FastPass then headed over the Pirates.
We rode Pirates at Disneyland last year, and this was much the same - a fun boat ride. The Jungle Cruise was a blast because the CM "guide" was extrememly funny - he had a pun a minute and then some.
After Adventureland, we walked down Main Street and checked out some of the shops. We bought a few things, but we're saving the bulk of our shopping for tonight when we go back to Downtown Disney (again). We get a 10% discount there with our Magic Kingdom discount card.
We have reservations tonight at the California Grill restaurant at the Contemporary resort. It's got a well-deserved reputation as the best restaurant in Disney. The menu is very interesting, the food was great, and the service was outstanding, even by Disney standards. Not only that, but the view from the 15th floor of the Contemporary Resort Hotel is spectacular.
After dinner, we took the bus over to Downtown Disney for one last shopping trip. Everyone got something at the huge Disney store there, then we headed for the boat dock for our ride home.
Saturday, May 19
It's our day to return home from vacation, but in reality, we have almost a full day ahead of us - our flight doesn't leave until 8:15 PM. That doesn't get us home until around midnight, but it'll be worth it to spend another day in the parks. We got up, packed out room, and they had them store our luggage for the day.
We decided to head over to Disney-MGM. In May, they're having "Star Wars" weekends every weekend, featuring characters and special events from the Star Wars movies. We didn't want to miss out! It was great! The Star Wars area of the park was crawling with movie characters - Boba Fett, Darth Vader, Luke Skywalker, Princess Leia, Chewbacca, Imperial stormtroopers, and various aliens. I got pictures of many of these, including some posed with Julia. They also had a couple of celebrities there - David Prowse, who played Darth Vader in the first 3 movies, and Jake Lloyd, who played Anakin Skywalker in The Phantom Menace. I got a good photo of Jake Lloyd as he was riding in a convertible through the park.
Julia and I rode the Rock 'n' Roller Coaster one more time, and the three of us too the Animation tour. This tour took over 40 minutes, but they shoed the animation studios where animators do their magic. We even got a talk and demo from an animator. There were a couple of short films as part of the tour featuring Robin Williams and Walter Cronkite. We also saw some artwork from released movies, like Mulan, and previews of upcoming movies, including The Emperor's New Groove. This was a long tour, but well worth it for all the behind-the-scenes stuff.
We grabbed lunch at Pizza Planet, which is right out of the movie Toy Story, then watched the 3-D Muppets movie, which is full of the expected Muppets homor. We were able to just get into the movie.
The last thing we did was go to the Hunchback of Notre Dame show, which is based on the movie of the same title. This is a rarity at Disney - true live theatre. The actors are really singing their parts; there's no lip-sync, as there is in the Beauty and the Beast show (there was no live orchestra, however). We got there very early, and I struck up a conversation with an usher CM. He was very friendly, and told us where to sit for the best view - 5th row, right next to the runway that jutted out into the audience. I suspect he knew more about that particular spot than he let on.
About 20 minutes before the show was scheduled to start, Matt the juggler, dressed in Hunchback-period garb, came out to do a pre-show show. I'm a juggler, so I'm always eagar to see jugglers in performance. He started out with some well-done work on the diabolo (which he repeatedly mispronounced as a "diablo," grrr). They he sought a volunteer from the audience. Who did he pick, but... Julia! He had her introduce herself, then wanted her to help with the act. She had to hold softball-sized rubber balls out to Matt to add to his juggling pattern, they strike a pose and wait for the inevitable applause. After she handed Matt all 4 juggling balls one at a time, he juggled them and then finished by throwing them into a fishnet that Julia was holding. Julia did a great job, and got a well-earned round of applause before returing her seat.
The Hunchback show itself was phenomenal. The troupe puts on 5 shows a day, but you'd hardly know it - they really seem to pour themselves into it. The sets, the lights, the sound, and the costumes were excellent, and the actors did a great job. If you go to Disney World, make sure you see this show. And see if you can get the 5th row seat on the runway ;-)
After that show, we left the park and headed back to the hotel. We all took showers (it was blazing hot today, had to be around 95°F) and changed into fresh clothes, grabbed a quick dinner at the hotel restaurant, then got our ride to the airport. The trip home was uneventful.
This was one of our best vacations ever. We could have stayed another week! We didn't get to go to any of the Disney water parks, or the Disney Mini-Golf. The weather was ideal, most of our dining experiences were great, and best of all, Julia showed no sign of being unable to keep up. She had a little of what we called "heat rash" most of the week, but it never got any worse than that and she didn't get any sunburn at all (none of us did, in fact).
Tuesday, May 23
Cari Dorsey, a friend on a Myositis mailing list, sent along the following information about Fifth Disease that I didn't know:
When I checked some children's medical books,
Fifths disease was documented as a real disease with
very disguishing characteristics. They are much the
same symptoms as the rash that comes with JDM - lacey
rash with a slapped face look. With those symptoms it is
easy to see how kids could have initially been
misdiagnosed except that Fifth's disease is
harmless. Other symptoms are usually just a slight
fever and maybe the child just feeling a little yucky.
It can take 7 - 10 days to run its course. The child
is no longer contagious once the rash appears. It is
certainly not as uncomfortable as chicken pox or strep
throat. There have been a number of cases here in
my area. I am inclined to think that my son did
have a case of fifth's. Some of his friends had the
same symptoms and were diagnosed with the same thing.
Frustrating to not have a single test, like for strep,
that they can do. Two different doctors dx him with Fifths.
Interesting stuff. Thanks, Cari!
Thursday, May 25
Julia woke up this morning with a slightly swollen elbow that she couldn't fully straighten out. She said she kept whacking it at school yesterday and it wasn't bothering her at bedtime last night. We gave her a Tylenol and she went off to school. By dinner time, she had forgotten all about it. It was probably just bruised.
Monday, May 29
This is Memorial Day in the United States, a day we dedicate to the memory of veterans who died fighting for our country. It's a day usually marked with parades and ceremony, but we decided to lay low and enjoy some nice weather.
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