Will the van hold it all? Another Wish Trip

[alizesmom]

Hooray, we're going to WDW. Our trip runs from Nov 30 - Dec 11 since we are driving from PA. We will actually be at Disney from Dec 2-8. Like many other families we are lucky to be staying at Give Kids the World.

The cast:
DH (Charlie) age 53
Me (Karen) age 54 and principal planner
Wendy age 30 something, Alize's main nurse
Alize age 4 1/2 and the Wish Child

Alize was born 16 weeks early and had a severe brain bleed right after birth. He has hydrocephalus, CP, dystonia, profound MR, seizure disorder, CVI (a type of blindness), a trach to breath and a g-tube to be fed through. He uses a wheelchair to get around otherwise he has poor head control, can't roll over or sit. Alize meets the world through sound and sensation. He's going to love Disney.

Charlie and I have been to WDW before. It will be a first time for Wendy and Alize.

I've been following many of the threads here especially the Wish ones and have already used many suggestions. Got our misting fan, our Wal-Mart ponchos and our crocs.

I'm hoarding extra suction catheters, trach tubes, feeding tubes and formula. Bought a cooler that runs on the car battery for Alize's meds (and maybe some diet coke for mom).

OK Bill Lin, I've started. Karen

 

[fonsy]

Hi Karen ! I'll be following your report

 

[Avivasmom]

I am in too...we will just miss you. We will be there Nov. 26-30th...My DD is a preemie born almost 2 1/2 months early.

Cannot wait to read more.

 

[alizesmom]

How Alize got his Wish Trip is simple. He was our foster child and his caseworker referred him last spring. He had just gone through 19 revisions of the shunt in his head in 10 months so we really needed something to look forward to. He was approved and we decided on Disney since he loves the sound of crowds and kids (his favorite place is Wal-Mart when it's busy). We finally got to adopt him on July 17 of this year. He has now been in our home for 3 years. He has multiple doctors and the one who coordinates his care gave approval but really wanted us to take a nurse to watch him at night. Wendy volunteered in a flash (she gets to go to Disney and still gets paid for working ). His shunt has been working now since May 1 so we are hopeful that this one is going to last. He's had a couple outpatient surgeries since May but nothing inpatient. We are sooooo ready for a vacation. Karen

 

[Avivasmom]

Congrats on the adoption..lucky family you are...to be able to adopt him. You will have a blast!

 

[Bill_Lin]

I am really excited to see you start this thread. You are off to a great start, and will get the hang of it in no time.

I am happy to hear about your adoption. What an honor for you all!

How is your shopping list coming? It will be a bit cooler there when you go than when we did, but rain is still a good possibility. It may be a bit more crowded too, but I hear most people go the week of our the week after Thanksgiving, so you may miss the crowds completely. Still, get your G.A.C. and USE it ALWAYS.

 

[alizesmom]

Warning, may be boring content.

I am learning how to take a multiply challenged child on vacation. I hope to be able to give (and get) ideas on what works and what doesn't. We have chosen to drive to Disney since we have so much equipment and medications to take with us and I'm paranoid about losing them. I have heard suggestions of shipping many of these to your resort and/or renting while there.

Our list includes: wheelchair, c-pap, oxygen, suction (2 of these in case of failure), oximeter, nebulizer, ambu bag. Alize takes about a dozen different medications some of which need refrigerated. He gets one by injection twice a day so can't forget the syringes and needle disposal box. Along with this are all of the things that go with the equipment (trachs, feeding tubes, formula, trach ties, chargers for all of the equipment).

Mr Alize is doing great. If all is well then he always wears a huge smile. He turns his head side to side just like radar in order to pick up all of the sounds around him. When we hit Disney, I imagine that his head will be in constant motion.

We have our days casually mapped out. Basically we know what park we'll hit on what day. We have set up dinner's at Rainforest Cafe in AK, Morocco (along with the Candlelight Processional) and Dining with Shamu (that one for nurse Wendy). The CMs I talked to were great and when I explained why he wouldn't be eating, even off my plate, they didn't require us to pay for him.

My final comment for today, I love Make a Wish! They just called us yesterday and casually asked if we'd like to take Alize to see the Wiggles on Thursday. He's going to have a blast.

Karen

 

[Bill_Lin]

At the time we first started planning our trip, I was on night-time oxygen and headed for CPAP. Make a Wish seemed to suggest that they would arrange for such equipment to be rented for us while at GKTW, since it would be TOO far to drive. We did not end up needing such things as I improved. I do not know how it would have panned out. They acted as if such things were ordinarily provided.

 

[Camster0307]

Karen - Looks like we'll just be missing you. Our wish trip is Nov.24-30th. We've gone many times during that first week of Dec. and I can just say be prepared for all types of weather. We've had it hot enough to go swimming and yet cold enough at night that we need hats and gloves!

My daughter Amanda also requires alot of medical equipment. She too has a trach, g-tube, is occasionally on oxygen and needs a vent at night. Because of her needs, we utilize the first aid stations quite a bit. They will hold on to any medical equipment you don't need you feel to carry around all day (better to leave it there than a locker). We also always would go back to first aid to change Amanda or just give her a break. They are so nice and accomodating.

 

[Bill_Lin]

Great Tip on the First Aid stations Camster! Don't forget the Wish Lounge at MK for royal treatment and a quiet, private place.

 

[Camster0307]

Something else I know nothing about! That's why I LOVE the Disboards - can always count on finding about something new and helpful! Please do tell about the Wish Lounge!

 

[LeeLee2U]

Hi Karen I'm here!! Wow How blessed all 3 of you are to have each other as a family!! God knew just what kind of Mom Alize would need!! Alize will love WDW!!! The last few days we saw more shows than anything as Braeton was kinda off and he loved it!! While he loves the rides. The sensations of the shows really WOWED Him. Especially the NEMO and the Festival of the Lion King at Animal Kingdom. I highly recommend these 2 at AK!!!Talk about great therapy!! While we were at Disney actually didn't have to do a lot of therapy with Braeton. We were doing it all day inthe parks!!!
I'm so glad you started this!!!
Leah

 

[Bill_Lin]

Camster, Wendy can tell you a lot more, but we did have an experience with the Wish Lounge that was very nice. Chaos can kind of swirl around you at times on a wish trip, like the twister in the Wizard of Oz, and catch you up until you feel a bit dizzy. The good news is that you usually land on a wicked witch and smush her. Never the less, if you end up in a whirl at MK, stopping in the quite, personal, privacy of the Wish Lounge can really help you get your bearings. There are nice chairs and a huge floor pillow for kids to use when resting. They have a nice television and bottled water. Best of all the room will be staffed by two wonderful Cast Members who are there for the sole reason of helping you with whatever you need. They can make calls to help arrange special moments, or to check on meal reservations and openings.

Matt helped us by canceling our reservations at the Grand Floridian dinner because Jeff, at Guest Services had already gotten us a meal at Cinderella's Royal Table in the Castle... HURRAY! Alex and Matt suggested a late lunch at the Columbia Harbor House (which closes at 5:00 for some reason) and we loved the fish and chips. They could have helped us find Piglet, but I was so whirled that I forgot all about Piglet until it was too late. My DD has not disowned me for this.

It is a small room, created just for wish trip families, but has a separate bathroom (HURRAY!). You will find the lounge between Casey's Corner and the Crystal Palace at the end of Main Street closest to the castle. If I remember right, you actually have to go into the first aid door where you will find a hall. In the hall you will find a door with a sign that reads, "Wish Lounge."

Wendy, do I have all of this right?

 

[Iluvmickeymouse!]

Karen, you are off to a geat start!!! You and Eeyore's mom are making me feel guilty for not starting a trip report and we leave in one week!!! Don't think I'll get much time to do it this week either. Oh well, you will all just have to wait for the trip report when I get back. Keep up the good work and I can't wait to read more!!!

 

[LeeLee2U]

Karen That's not boring content. Thats just what these Pre Trippies are supposed to have in them! People that read these like to know just what you are bringing and yours may very well help another Wish tripper that may feel overwhelmed w/ the amount of equipment they have to bring not feel so alone!! I think you are doing GREAT!!!!
I was scared to start one, but needed the help, so I tagged along on other PTRs!! That was before we had the Wish Tripper one!!
ILMM Don't worry about not starting a PTR yet, Just tag along on all these and you have our Wish Tripper one!! When you get back you can start a TR and start off with a few days before. Thats what I did with mine as you know and Look I just now got to my resort!! Now if I can get the time to move us a little bit forward!!!
Looking forward to reading both of ya'lls reports when you get back!!!!!!!!!
Have a blessed day!!

 

[alizesmom]

Alize is in bed but not sleeping. Lately he's been falling asleep about 4:30am and sleeping till 1p. Ah, the life.

I picked up the new copy of Birnbaum's Guide to WDW for 2008. It's like greeting an old friend and catching up on what's new. Nurse Wendy looked at it today and is in awe.

We decided to keep the phone number and address of Arnold Palmer Hospital handy for any medical emergencies. It helps calm my paranoia about things that can go wrong. I also insisted on getting a GPS so that on the way down I can find the nearest hospital in a flash.

Our schedule is loosely set:

Nov 30 and Dec 1: drive most of the day. Will reserve a hotel room later this week. Nurse Wendy and Charlie are worried I'll only get one room (I can be a little cheap). I guaranteed I'd get two.

Dec 2: arrive at GKTW after a short drive. Spend the remainder of the day resting and orienting.

Dec 3: Magic Kingdom

Dec 4: MGM in the am and Epcot pm. Reservations at Morocco for supper and Candlelight Processional. Illuminations after.

Dec 5: Sea World. Dining with Shamu.

Dec 6: Animal Kingdom. Lunch at Rainforest Cafe. Will not miss Festival of the Lion King. Back to GKTW for Christmas

Dec 7: Stay at GKTW and rest up for trip home.

Dec 8-10: drive home.

Here's where we are open to opinions of what we can't miss. I will start filling in the gaps in our days as Charlie and Wendy tell me what's on their can't miss list. I already have ideas for Alize. Karen

 

[Camster0307]

For your AK day: I've heard on these boards that "Finding Nemo-The Musical" is a great show. You might want to check that out also. I haven't seen it but it's a must-see for our trip. Amanda just LOVED the movie - so colorful and visually stimiluating; I'm thinking the live show should be just as good -- and will now have the added bonus of catchy show tunes!

You'll love the Candlelight Processional - so beautiful and will definitely get you in the Christmas spirit! You're all going to have a great time!

 

[mrsksomeday]

Great start on your pre-trippie!! It is not boring at all. Can't wait to read more .

 

[Bill_Lin]

I have to express my prejudice regarding your day 4. Fantasmic is a GREAT reason to end the day at MGM and start at Epcot.... but that is but one humble opinion.

 

[alizesmom]

Not too much to add at this time. We've ended up going back and forth to the hospital this week (only a 2 hour drive away). Alize's trach keeps falling out. He's grown so much that it's too short. We're waiting for a custom made one.

I'm an underpacker so my family is restricted to one bag each. I plan to do laundry at GKTW every few days so 2 sets of jeans, 3 shirts (like we won't pick up a few at WDW) and appropriate underthings. Also a warm sweater or jacket. Slightly more jeans for Alize for when he misses the diaper (how do little boys manage this so well?).

Trip is all mapped out. What used to take 24 hours the last time we went is now down to a little over 16. Now we can drive comfortably on the way down and maybe push it a bit more going home.

Another star of our tale has to be our van. When Alize started to get too heavy to lift in and out of the car we started looking for an accessible van. Even used they are pricey. Our first day we found a 2004 Town and Country with raised roof and lots of fluff. It only had 17000 miles on it and still had 6 years of the manufacturers warrenty. For an additional $800 we were able to get a lift installed. Now, travel is soooo easy. Drop the lift and roll Alize in. No more lifting him into a carseat, no more taking the wheelchair apart in the snow so that it fits in the trunk.

Gotta go do housework. Tonight, the WIGGLES. Karen