57 days until wish trip to Disneyland

[tastycollector]

ok...where to start? We are 57 days until our 7 yr old's wish trip to Disneyland/legoland!!!!! Dev's wish is through Kids Wish Network. We don't have wish granters that come to our house, but he does have his coor. and she calls on a regular basis. Dev was dx with CVID at 18 months and we started treatment at 25 months. We do IVIG infusions every 28 days, along with mannnnnnny other meds. He has a port. Any idea if it will set off the alarms at the airport??? We have never traveled except by car and never far!

The choice to go to Disneyland came at the last minute when he found out that there are no Legos in FL!!! That and he thought the Indy ride looked better!!! Everything at our house is Indy Legos!! Indy Lego Wii games, 10 boxes of Indy Legos for his b-day last month (it was an Indy Party!!!)! That and roller coasters. Dev says first we're going to ride the up down ones, then the looppety loops, and the (with hand making corkscrew motion) ones that go like this!!! He is tall enough for all of them...he has been counting the inches for the last two years!

I don't know much else right now. We are supposed to get info the first part of April. I do know that we are not staying inside the park, but 5-10 minutes away and we will have a rental car. I'm a little nervous about the flight...germ issues for one. We've been advised to fly with a mask on Dev...try to keep the germs to a minimuim.

Any thoughts, etc. to calm mom's nerves would be great! He and my 9 yr old daughter are already trying to pack their bags!?!?! They can't wait and neither can we!

 

[jessica52877]

Your son and mine sound alot alike in the lego/fun department! Dallas is 6 and can't wait until he is tall enough for California Screamin'. He is a lego aholic and just loves Indiana Jones! We have quite a lego city that includes some odd city characters (bionicles, star wars, power miners and other various non city people).

 

[jham]

We love Legoland and Disneyland! We've been to both many times, as has Jessica in the above post. If you have any questions, ask us! Except we don't know a lot about how they handle wish trips.

 

[tastycollector]

Our Disneyland planning DVD came in the mail today! I think the kids watched it 100 times! Dev has added going to padiwan (sp) school to learn how to be a Jedi! He thinks this would be a great adventure.

I saw some things about meals with characters. Any info on these would be great. I not sure who Dev would pick as his favorite. I also noticed that there are several different parades. The parade of dreams reminds me of the electric parade on Main Street at DisneyWorld. Does this one run on a regular schedule? I can't seem to find times and dates in May yet.

Oh yeah...our wish trip is May 6-10th. It will be an awesome way to spend Mother's Day! I'm just sad that our 16 year old can't make the trip with us. She is going to be preparing for AP exams and can't afford to miss the days of school. We talked with the docs and they don't think waiting until summer is a good choice...more people, heat can be an issue, and we may be having another surgery that will require major recovery time.

The kids are ready to pack their bags NOW!!!! Dev informed me that he could do without his toothbrush until the trip. YUCK! I told him that he needed it for a few more days first. Any packing ideas would be helpful. We have never traveled this far from home with him.

 

[jham]

Definitely don't miss Jedi Training Academy! I don't know if they will have it when you are there, but they have the Electric Light Parade at California Adventure. It seems just like the one I saw when I was a kid.

For Character meals there is the classic Goofy's Kitchen at the Disneyland Hotel. I think we saw Chip and Dale, Goofy, Pluto, Belle, Mickey and Minnie. I think Mulan was there also but we didn't see her. I was expecting the "classic" characters but was pleasantly surprised to see a couple of princesses. That is a buffet restaurant. There is a picture in my signature with my kids in front of a big Jack-o-lantern. That is my latest Disneyland trip report from last October. That has some pictures of Goofy's Kitchen. I also really like the character breakfast at the Storyteller's Cafe in the Grand Californian. That is with Chip and Dale and some of the other classic characters. I haven't been there in a while but I'm thinking we saw Tigger there too. Other than Chip and Dale the characters can vary. This is also a buffet. In California Adventure at Ariel's Grotto is where you go for a Princess character meal. This is not a buffet but served "family style" . Paradise Pier Hotel has a breakfast with Lilo and Stitch. I haven't done this one but it sounds fun. Then in Disneyland Park the character dining is at the Plaza Inn which is a breakfast buffet with minnie and other classic characters.

I'm not sure what the schedule is/will be in May but in "off-season" often the fireworks will only be on the weekend and parades etc. will be limited but since it is only 2 parks you don't really have to plan a whole day around it. More than once we have run out the entrance of California Adventure as it is closing to see the fireworks across the way at Disneyland Park. It is not a big deal to park hop for a parade either. I've ran from one park to another just for a dining reservation.

Probably the most popular place to eat is the Blue Bayau where you dine right inside the Pirates of the Carribean ride. You can see the boats drift by and the "fireflies" and it is kind of dark. It is really fun to eat there but a bit spendy. You definitely need advance reservations for Blue Bayau.

 

[jessica52877]

Jeanne is the real expert on DL! We went May 9-17 of last year and they only did the fireworks on friday, saturday and sunday nights. We watched them from our hotel each night (Howard Johnson Anaheim). I can't remember the parade schedule and if the electrical one ran more often or not then the fireworks. We did hop parks just for the parade. Our favorite was the Pixar Play Parade at DCA if they are running that while you are there.

We never did a character meal as DS5 (at the time) thinks he is too old for them. Silly boy! And I am the cheapest mama, so actually it works for me. I think Goofy's Kitchen looks like the most fun though. We ate most nights right outside the parks and LOVED Mimi's and Tony Roma's.

Oh and jedi training was the BEST! We went to the first show each time we have been to DL and DS has always been picked (might be a little trick to this we'll share with you later). We hit the first one so if he wasn't picked we could go back. It is all DS talked about the rest of the trip (even though he didn't act excited to do it in the first place).

Where are you'll flying from? Just wondered how long your flight would be. We have always had a rental car and I have map quested out directions to several places. It worked out well having them all done up ahead of time. I had alot I wanted to see in Southern California since it isn't a place we get to that often.

 

[tastycollector]

So, April is quickly approaching. I'm hoping that we will start getting our information soon. kids Wish Network said that we should get our flight plans and hotel arragements soon!! I can't wait to find out we are staying. Dev has treatment week, so we will be at the hospital part of the time. Does anyone know where I can download Disney music? My 9 yr old daughter is going to be making a movie about our trip for a school project the day after we get back from our trip. We just got a laptop so that we can bring it along for the trip. The kids think they want to ride every roller coaster!! Only problem is, they have never been on one. Any ideas about a good first one to ride as not scare them? Also, any good sites with info about what to pack? We have checked out the TSA on what requirements on meds, etc. Does anyone know if a port will set off the metal decetor?

 

[tastycollector]

Well, Disney maybe on hold for us... We are at day 7 in the hospital...no end in sight yet. We are supposed to leave in 35 days! I talked with our Wish coor. today so that they would know. Hotel had been booked, by flight arrangements haven't been made yet. I'm having a hard time even thinking about the trip. We keep telling Dev that he has to get better and eat so that we can ride the Indy rollercoaster. I have told him that if he isn't better in time that we will just move the trip. Just waiting...

 

[disneyquilter]

I'm sorry to hear about your son being in the hospital for the past week. Please keep us up to date on his status and I hope everything is ok. My prayers are with you and your family.

BTW--this probably isn't important right now, but maybe it will help your son with his hospital stay, but my family and I are at DL every week (we're AP holders) so if you would like I can mail you maps of DCA and DL. Privately e-mail me if you would like those maps.

 

[jessica52877]

I am sorry that things aren't going as planned. I hope Dev gets better soon. DL will be waiting when he is better.

 

[tastycollector]

Well, they changed Dev's meds again. We are down to 5 one hour IV treatments. The port site is healing and the PICC line is in. Dev is doing okay with the PICC. The doc says if this combo works, we should get to go home with 2 weeks IV treatment. Still waiting on the cardio doc...waiting to see if we have heart valve damage that will require longer treatment or possible replacement. Dev ate a slice of pizza yesterday, and a little cereal today. They have cut back on the IV fluids and he went outside with his sister today and his best bud yesterday. He is still mainly riding in the wheelchair. We may need to take one on the trip...? My mom has a transport chair. Since Dev is feeling better-giving his sister and Mom a hard time (YEAH!)-so we have put the countdown on has white board in his hospital room.

I guess I need to start to think about packing. NO SWIMMING-docs orders, even if the PICC is out. We got this infection from water...we can ride on the water rides, but I don't know about the canoe ride across the lake. My 9 yr old dd wants to do this ever since she went kayaking with Girl Scouts.

Now we wait and see on meds...

Time to go Dev wants the computer!

 

[tastycollector]

We got to come home today!

 

[tastycollector]

Well, we didn't end up leaving as planned. We have rescheduled for July 8th-12th. This means we have about 60 days until we leave. Can anyone give me anyone give me info about the weather in CA at this time of year?

Also, we got a call from DL they are setting up for Dev to meet with Darth Vader!!! He doesn't know about it! Dev is going totally flip. We can't wait.
We have a few more dr. appt. before he will be cleared to leave, but all is looking well.

 

[jham]

Wow! Darth Vadar? Too cool!

 

[tastycollector]

Quick intro-me-mom to 3 and sometimes 4 (DH)
-DH who works hard as a Handyman
-DD(16)
-DD(9) ha
-DS(7)-Devon (Dev)our wish child

Dev has a PID(primary immune disorder). He has been receiving blood product infussions every month for the last 5 years. He has had multiple surgeries for sinus infections, chicken pox 4 times, and most recently suffered from multiple organism blood sepsis (7 bugs in all). This last infection had him in the hospital for a month and caused us to move our trip since we had only been out of the hospital 11 days before we were supposed to leave.

We have rescheduled for July 8-12.


Ok, so we are at 57 days and counting, AGAIN! We went to the cardiologist today and got the all clear. The infection in Dev's heart valve is gone and so is the backflow problem. God answers prayers! We can take a breath of relief now. We have to get through the appt. on Friday with the urologist and all will be great.

Our second of three sets of trading pins came in the mail today. DD (9) wants to trade these. She is a big collector of things (postcards, stamps,etc.)! We are going to let the kids earn a pin a day until our trip, so they will each have some to trade.

Tonight DD is presenting her project on Dev's wish trip. It is not quite how we had hoped it would be, but it is still good. She was hoping to have pictures of our trip. We were supposed to come home late last night. She has presented the problem of what happens when a wish child gets sick too close to their trip.

 

[tinytreasures]

wow your son has had a hard time lately
our son had his wish trip in Feb. He has PID also
he has been doing IVIG every 21 days for 6yrs now
I never even thought about the port setting off the alarms and it didn't (I was more worried about the pins in his hand then his port)
I got masks for him to wear on the plane but forgot them at home and didn't remember until about a hour after we got on the plane

 

[tastycollector]

Well, the port won't be a problem...we think. Currently Dev has no port due to this last infection. His port was super YUCKY!!! We are going to try treatments using a site in his hand....we'll see how that goes next week.

Part of my DD9 project was to make something that would solve the problem of the trip being postponed. She made a back pack with masks, first aid kit, colored pencils, maps of the parks, maps to the nearest hospitals, etc. and put "Wish Trip" with glow in the dark paint on it. She said this should be one of our carry ons. I think she had a great idea!

 

[tastycollector]

Yikes! We started looking at what to pack and DD(9) has ahd another growth spurt! I need to bricks on that child's head. I guess we will try to go shopping this week because she only has 3 pair of shorts to get her to the end of the school year and it is 90+ outside already.

How much stuff should we pack for a 5 day trip? I haven't a clue. The only places we have gone are to visit family about 3-4 hours away and overnight camping.

 

[jessica52877]

I like to take 1 outfit per day and then an extra outfit. I also then will add in a pair of jeans and a sweatshirt or maybe a light long sleeve shirt of some sort. I am a fairly light packer though!

 

[tastycollector]

Back to dr. with Dev. The school called and said Dev wouldn't walk on his right foot. This is only the second time in 3 years that he has gone to the nurse to come home. The other was side effects from his treatment and he got sick. The pedi said that it isn't broken, but they are afraid that it may be an infection in the skin or bone. We wait and watch. Never a good sign when he doesn't want to play at recess with his friends or play Wii.

If all goes well, I'm going shopping with DD9 on Saturday. A coupon for her favorite store came in the mail. 40% off your whole purchase. Good thing, 'cause these growth spurts are crazy. One hormonal girl was plenty. Two is just crazy. The older one isn't so bad now, but the younger one is just starting with the fits and such.

I can't decide if I should pack bathing suits for husband and DD. Dev can't get in the water (dr. orders), so I was thinking it would be easier if no one had them. I know that this is Dev's Wish Trip, but I don't want her to feel like she missed out on what she wanted do. We will probably never get a chance to go on a trip like this again. Guilty Mommy feelings.