Once again, Sorry for the lack of updates… we have all been real busy..
We all had a great time on Brody's make a wish trip we were gone from April 4th thru the 14th. He was treated to 7 days in Florida. We arranged to go down early and pay for the rental car and our lodgings for an extra few days.
We flew out on Monday—we were picked up at our house and driven to Detroit where we caught a direct flight to Orlando,Florida. Brody didn't remember his previous flight to Florida when he was not quite 2 so he was excited and took a bunch of pictures of the other planes and the airport as we taxied for take off… the flight was a little bumpy as we flew over a storm that had gone through early that morning but smoothed out and it was otherwise a nice 2 hour flight to Orlando. We picked up a rental car (minvan) and drove to the gulf coast—after stopping to eat on the way and fighting the Tampa traffic we arrived at our hotel not long before sunset in Saint Petersberg near the mouth of Tampa bay. The water was still a little cool but the boys had fun making sand castles til it got dark then we went in the hotel pool and hot tub.
The next day was cloudy with rain showers in the morning but it cleared up in the afternoon and we played on the beach and at the pool—watched the sunset again and not long after sunset were able to watch a crescent moon set over the ocean.
The next morning was nice but we had to check out of our room… we hung out at a park at the mouth of Tampa bay called Fort De Soto Park til about 4 and played at the park for a while and walked on a fishing pier then started driving back to Orlando—we were just getting through the Tampa traffic again when Brody decided he wanted to eat at Texas Road House (his favorite place)…. Checking my Droid phone I found that there "had been" one in Orlando but it had closed—we found one about 15 miles to our north and no other nearby—we ended up caught in more traffic for a few miles but finally got to the restaurant and Brody was happy…. We found a nice hotel in Orlando with my Droid phone on Orbitz website and paid for it on the way… it was a pretty nice one about a mile from sea world… we stayed there for 2 nights—we played in their pool and went to wet and wild (a water park) for a few hours where Brody and Jaden found some pretty good "kid slides"—we also went in the big wave pool a few times which the kids really liked.
The next day (Friday) we checked into the Give the Kids the World Village in Kissimee Florida—this is south east of Orlando and about 15 minutes from Disney world—maybe 20-25 minutes from Universal and Seaworld. The village is laid out pretty nice—there are a bunch of Duplex villas-- they are duplexes with a connecting door to accommodate larger families I imagine—Our villa had 2 bedrooms and 2 baths with a nice living room and kitchen…
The village is pretty well run—the staff was very friendly and is made up of full time employees and a ton of volunteers—the volunteers looked to be either students or seniors and everyone there was wonderful…. There was a merry go round, train, a little pond with remote control boats you could drive, an awesome "train room" (an entire town)—pools, etc…. we could eat breakfast and dinner at the gingerbread house and they had a carryout/delievery place called Katy's Kitchen that served between 11 am until 10 pm (we could eat there or call in an order and they would deliver it to our villa—remarkably fast)… we could also order pizza and have it delivered, there was also an ice cream shop…. The whole idea was for you to not have to worry about anything— Make a Wish even provided us a stipend for food and incidentals while at the parks. Each day they brought the boys presents—stuffed animals, videos, games….
They gave us 3 day Disney park hopper passes, 2 day Universal park hopper passes, and a 1 day Sea World pass—the parks all comped us free parking and free stroller rental (we got double strollers so both Jaden and Brody could ride)--- the neck pass they gave us (one of us had to wear) allowed us to use the fast pass lines for every ride--- this spoiled Brody especially as he would complain if he had to wait more then 5 minutes to get on a ride.
The first day (Friday) we went to Disney's Magic Kingdom—we went straight to Thunder mountain because Brody wanted to ride a roller coaster— he loved thunder mountain…. We rode this a few times then went to Splash mountain and these 2 rides were Brody's favorite rides at Disney—we went on them over and over again….he liked the haunted mansion also--- We did get over to Tomorrow Land— but Brody was too short to ride Space mountain. We did ride the cars and the a few other things over there but Brody made us head back to Splash mountain and Thunder mountain… we watched the electrical parade but missed the fire works as we were riding splash mountain when they set them off…. We closed the park down at midnight—and finally got back to our villa at GTKTW at about 1:30 am.
On Saturday we slept in and then went to the pool for a while, and Brody decided to head back to Disney… we got there relatively late—went back to Splash mountain and Thunder mountain several times and then talked Brody into going to another park… we rode the monorail over to epcot--- Brody evidently was tired and fell asleep on the monorail—this kind of put him in a bad mood for a while--- he was hungry but couldn't decide what he wanted (other then pizza which we could not find at epcot—in addition epcot is really spread out)—he finally calmed down and ate and we went on the "Soarin" ride at epcot which he really liked—it is kind of a motion ride where you sit in these suspended seats in an IMAX theatre and you "glide" over different landmarks in California—Golden gate bridge, Yosimite, Ocean, Golf course, Dessert, it ends at Disneyland where you have fireworks—really cool ride.
By this time EPCOT was closing (at 8 pm) and we headed back over to the Magic Kingdom— we got back to the parking lot and it was already getting pretty late so we decided to head back to GTKTW and got the boys in bed around 11:30 or so..
The next day (Sunday) we went to Sea World—we thought it would be easier to hit Disney and Universal during the week—Sea World was pretty good--- we watched the Shamu Show—Brody said he wanted to get wet so we sat up front and when Shamu splashed him he got scared and wanted to get out of there— Brody found a water ride (log flume type) there called Atlantis that he loved--- unfortunately if you sit in the front you are guaranteed to get very wet—there were not a lot of rides there and we must have rode it 15 times and we were drenched, we did get a chance to feed the dolphins (the park comped us some fish with the neck pass)—fortunately Seaworld closes early so we got out of there about 7 pm and got back to GTKTW about 8 pm or so and got a good nights sleep….
On Monday we went to Universal Islands of Adventure— We rode the Jurassic park ride several times, Brody didn't like the 3D spiderman motion ride— Brody was not tall enough to ride their log flume ride or the new Harry Potter ride… we did got on one of those white water rafting rides that get you drenched—and some kid rides in the Dr Suess land they have there--- late in the day the boys found a place in the Camp Jurassic area (a Jurasic park themed play area with lot of caves and trails and giant climbing nets) where you could spray water from at some other kids down below and they can spray back up at you--- they proceeded to have an hour long water fight with some other kids while mom and dad rested…. After the water fight we rode the Pteredons which fly over and around camp Jurrasic on rails… the boys all liked this so we promptly rode it again. We left about 8 pm and got back to GTKTW for another late dinner about 9 pm.
On Tuesday we went back to Universal but went to the universal studios side (they are very close to each other)—Geordi was afraid of the Twister "ride" as he has a fear of tornadoes, so Brody, Jaden, & Mom went on this—we went on the Simpsons ride which is another motion ride in an imax theatre—the boys (and their dad) are pretty big simpsons fans and we ended up riding this about 5 times…. We also did the Shrek 4D – which is a 3D show with moving seats (not quite a motion ride)--- we ate lunch at the Bubba Gump Shrimp company restaurant at the Universal city walk (a shopping/entertainment complex between the 2 parks)—Bubba Gumps is Moms favorite resturant---we also rode the ET ride—the boys decided to skip the Jaws ride and Brody wasn't really interested in shows…he loves rides….We got back to the GTKTW about 9 pm or so—we wanted a good nights sleep so we would be rested for a marathon Disney day on Wednesay--- our last full day in Florida—we also rode the Men in Black ride…(you shoot aliens and they tally your score as you go through the ride)
On Wednesday we got to Disney about 10:30 am and went to animal kingdom—we wanted the boys see the Bugs life 3D movie/show--- we rode one or 2 other rides there but Animal kingdom is more of a zoo then a park and Brody wanted rides… so we left there and headed to Disney Hollywood studios…. We went straight to the Tower of Terror which Brody rode twice and loved--- he was too small to ride the Aerosmith Roller coaster there…. We rode the Toys—Woodys shootout ride—this is a 3d ride where you shoot at different targets as you move through the ride and it Tallys your score—pretty cool—we rode this a few times… We wanted to ride the Star Tours motion ride but apparently it is gone now or being redone—it was not on the park map--- the boys were disappointed as they are pretty big Star wars fans…. We then got over to Epcot again about 5 or so and rode a few rides there (including Soarin') again then headed back to Magic Kingdom--- we got there right at the start of the Electrical parade which is a bad time--- we watched it again right at the entrance and then headed up main street—which with a stroller was next to impossible as everyone was moving to the central part of the park to watch the fireworks that happen right after-- we managed to cut over to Tomorrowland--- Brody and Mom watched the fireworks while Dad, Geordi, and Jaden went on a ride--- then finally we cut over to thunder mountain and splash mountain again… we went back and forth on these 2 rides until the park closed at midnight and then headed back to the Villa--- Brody fell asleep on the way home and we carried him to bed exhausted….
We checked out of our villa the next morning but were allowed to stay at the Village and finally experience some of the things to do there, there is a game room, a big train room with an entire town set up…. Brody put up his make a wish star--- this is inside of a castle and every kid that has been through Give the Kids the World has a star up on the ceiling or high up on the wall--- the village opened in 1986 and there are over 100,000 stars up on the ceiling and walls—Brody and us were allowed to write on it and then Brody put it in a box and the box shakes and with lights a fairy comes and whisks his star up to the ceiling… we then went over to the Candyland playground and played Candyland—we used the cards from a candyland game they gave us while staying there and Mom, Geordi, Jaden, & Brody walked the Candyland path while dad drew the cards for each of them—we played 3 or 4 games before we had to head back to the airport to catch our flight home… we go into Detroit about 7:30 pm and were home about 9 pm where our Dog Tori gave us a warm welcome….
As with any vacation it was too short. We wanted to do everything and practically wore ourselves out…. At least those of us not riding in the stroller.
Brody had a great time and I hope it made up for at least some of the things he had to endure.
As Trish noted in the previous post, Brody had a CT last Friday and we got the results on Wednesday… so far so good. Brody had to drink a contrast liquid prior to the CT (so they get good pictures)— he got an NG tube put in which he hates and this time they couldn't get it down to his stomach until the 3rd try (it kept going into his trachea), Brody was obviously upset getting the NG tube inserted but did fine after they got it in…. He did great during his scans as he has done throughout his treatment. He is by far the toughest kid I know.
As far as his treatment and recovery is going-- Brody is continuing to take bactrim (antibiotic) twice a day 3 days each week… this is to prevent him from getting pneumonia as his immune system is still somewhat compromised… Brody's doctor wants him to stay on it for 6 months… He could probably get off it sooner but it is risky and the only way they would know for sure if it has been long enough is to take him off it and see if he gets pneumonia or not. We give him zofran for nausea about an hour before he gets his Bactrim…. He hasn't had any nausea but the bactrim can upset his stomach so we do it just in case.
As far as the blood in his urine, he had a single drop of blood one time, just prior to our trip but not other episodes other then those mentioned previously…. He has been doing real good at staying hydrated—Brody discovered powerade (fruit punch flavored) down in florida and he drinks this down pretty fast—we have been getting the low/no sugar type as there is a ton of sugar in those drinks and he has to drink so much.
His hair is still coming in nice and thick and he is slowly putting on weight—he weighs about 39 pounds now…. Still being pretty finicky but getting a little bit better about trying foods.
We have been working with him trying to get him ready to start Kindergarten in the fall along with home schooling Geordi and Jaden. Geordi and Jaden have both been doing very well in school although they are both easily distracted from school work…. Jaden has been doing awesome in his reading. They both could use some work in the writing department but overall we are happy with the boys progress over the school year… we are confident they won't be behind in anything when they go back to school in the fall.
We are getting ready to go on our next trip to Hilton Head South Carolina—"Hilton Head Heroes" is providing us with a weeks lodging in Hilton Head—we just have to get ourselves down there—we plan on driving down there—it is about 900 miles so we will be taking 2 days to get there and back—we are hoping this will be a lot more "relaxing" then our Florida trip.
Once again—I apologize for the lack of updates—it is pretty safe to assume that no news is good news.
Thanks to everyone that has been following Brody's progress.
Bill
