Driving 6000 Miles for the Magic: A Miracle Trip

[eternaldisneyfan]

I have been wanting to write this report for awhile (July 2006)...but I was intimidated by all the great writers-originally I listed a few but there are just too many. I can promise you that this report will be like nothing you have ever read...

We drove from Ceres, CA to Davenport, FL in a Fun Mover RV. Yes, I said drove. We had to take a longer, indirect route to avoid extended time in high altitudes. The RV wasn't for sleeping-we needed the space for all the medical equipment. If you thought Lala packed a lot-she ain't got nothin' on us. We also needed the space for our big personalities

Under the Table of Contents you'll find the rest of the introduction story.

Table of Contents

Intro-Getting to Know You- Right here!

How Everything Came Together- Page 1, Post #7

To Needles! What Were We Thinking??- Page 2, Post #27

Crash, Trapped, Altitude Sickness-oh my!- Page 3, Post #36

Convention??? Keep on keepin' on- Page 4, Post #51

Broken equipment...just keep swimming-we're over halfway there!- Page 5, Post #68

Attacked!! And almost there!- Page 6, Post #90

We are here, we are here, we are here!!- Page 7, Post #101

Rest??? & Luau!- Page 9, Post #126

Epcot- It was the best of times and the worst of times- Page 10, Post #146

Magic Kingdom-Oh, its magic, ya know w/lotsa pics- Page 12, Post #173 & #174

"On this Magic Night..."- Page 14, Post #196

Interrupting Trip Report because of Medical Emergency- Page 15, Post #219, Page 16, Post #239, Page 17, Post #252

Epcot: Take 2, World Showcase- Page 18, Post #266

MGM: A Practically Perfect Day- Page 20, Post #288

AK: Very Warm Yet Wonderful- Page 21, Post #313 and #314

Sea World and a special visit- Page 23, Post #337 and #338

MGM2:a bipolar day pg. 25 w/pics- Page 25, Post #361,362,363

Epcot: Wow! Whee! OW! w/pix- Page 26, Post #389, 390

Where did it go? w/pix- Page 28, Post #409

Doin' the Park Hop w/pics- Page 29, Post #430

Trapped! Our last visit - Page 31, Post #457

Country road, take me home -Page 32, Post #473

The rain, the semi, the stress - Page 33, Post #490

"Ooooooook-lahoma!"- Page 34, Post #509

Clue--amended date- Page 35, Post #519

Relaxation, Friendship, and Visiting with pics- Page 36, Post #526

Elevation and Breakage- Page 37, Post #547

"I'm Coming Home" w/lotsa pics- Page 37, Post #553

The Change- Page 39, Post #572

The End - Page 40, Post #591

Addendum and Sign up for Traveling Wish Bear-Page 41, Post #604

Wish Bear Traveling Details-Page 41, Post #615

This report has pics!!
___________________________________________________________

We have a very unique family...

Grandma June: I'll just call her Grandma. If she was a Disney character, she would be Fairy Godmother. She is a very giving person and always serving. Grandma has always been around to help my mom (mild Muscular Dystrophy) with her two daughters (me and my sister) who have severe Muscular Dystrophy. Recently Grandma's own health issues (heart bypass, enlarged heart, severe arthritis, bone spurs, and wet macular degeneration) have limited how she can help directly with me. But Grandma is a big help cooking, cleaning and a great emotional and spiritual support. She is a bit ornery and is good at diffusing stress. Grandma has gone on all our vacations (including Make-a-Wish)

Mom: Mom is a great planner and organizer. Has to be prepared for anything and everything. Very assertive. Stresses easily. A bit overprotective. Likes Disney because it is the only place that we can enjoy the majority of attractions. Mom planned the route, got all the medical supplies ready (details later), and worked with Dad on modifying things. She was the driver. Mom can walk around the house but uses an electric wheelchair any other time. She uses a bi-pap while sleeping and has stamina issues.

Dad: Mr. Incredible! Dad can fix just about anything. Together he and Mom can build a modification to accomodate our needs (they built a custom tray for my ventilator that only sticks out 2 inches and swivels when I tip). I would describe Dad as a mixture of Tigger, Donald, and Eeyore. He can have a temper but has gotten much better. He really cares about his family and does a lot so we can experience life. He did a lot each day. We couldn't do anything without him. Likes Disney-goes because we (Me and Danielle) enjoy it so much. Oh, Dad also has sleep apnea and uses a CPAP.

Danielle: 19. My lovely sister. We have always been close. Sweet personality. Seems quiet but really has a dynamic, creative personality. Smart/hard-worker-currently a Freshman at University of the Pacific. Loves Disney. Medical: She uses an electric wheelchair full-time. She needs a ventilator (mask) and oxygen while sleeping. Some pain issues (orthopedic), kidney reflux/bladder problems that can result in lots of bathroom breaks.

Christamae (me or I): 21. This poem probably describes me best:
LOOK THROUGH
May 2003
I wrote this in the hospital during recovery from my back surgery. I was facing many new adjustments with the progression of my Muscular Dystrophy.

What do you see when you look at me?
Do you really see me?

At first glance a jumble of tubes and machinery
Wheelchair, ventilator, trach, port-o-cath, and GJ tube
Such a menagerie!
So hard to see through
To my personality

Look through the equipment
The lifeless blockades
See through to the person
The spirit within

Dig deeper to the human; the soul
Passionate, determined, caring, understanding, and witty
a faithful and competitive spirit
More than machines
Worthy of being known for me

Perceive past the outside
The tainted mask
Use true sight, not just eyes
So you may see the true me

What do you see when you look at me?
Do you really see me?

If you hadn't already guessed, I love to write. I also love to read. Before my trach I was very social but it damaged my voice and it is kinda hard to be social when you have to be attached to an adult. LOL. I spend a lot of time online with various groups, e-mail, and signing caringbridge guestbooks. I did most of the Disney planning. I love Disney the most! Besides all the awesome stuff to do, I love the magic. Disney World is also the place I feel the least disabled and don't feel looked down on.

I had all the A/C counter service restaurants marked and their menus. I had all the attractions we're interested in written down, categorized by kingdom/location, wheelchair accessibility, fastpass, attraction length, and location on the map. Companion bathrooms marked...

Actually, several times this trip didn't happen. We had obstacles and excitement up until the day of leaving. I, the biggest Disney lover, posted my reserves on the DisABILITIES forum:

"Okay. A little background information is needed for you to fully understand so please bear with me. I absolutely love Disney World. I love the magic and the accessibility. I haven't been in four years (since our family moved from Oklahoma to California), inside I am dying to go back...

Since our last trip I have acquired 24 hour J-tube feeds with G drain, a trach, ventilator use 14-20 hours a day, nerve damage/pain problems, extreme sensitivity to heat that causes retching/vomiting, high heart rate, and dizziness, breathing treatments every 2-3 hours, stamina issues/difficulty driving my wheelchair long distances due to arm weakness, and Spinal seizures (caused by spinal myoclonus from a nicked membrane and stretching during scoliosis surgery). ..

We used to be a commando type get-to-park-at-opening-and-leave-at-closing family. Now we're lucky to get to a park by one (judging from our San Diego Seaworld trip). And it took us 3 days to see Sea World (cool weather). Between the driving, a brief stop in Oklahoma, and 7-10 days at WDW, we'll be gone about a month.

Things I am stressing about:
1. We cannot fly and it is a very long drive from California to Oklahoma including mountains and my body does not like elevations. Tolerable with vent and oxygen.
2. All the hotel beds will be excruciating because of my orthopedic problems and contractures.
3. Dad getting too stressed which = stress for everyone else
4. Getting pneumonia (happens quiet frequently - 6 times in the past year)
5. Getting a port infection (I've had 3 infections in this port)
6. My GJ tube popping and needing to be replaced which can only be done in Interventional Radiology. I have a unique set-up at UCSF involving me on my side, my home vent, propping, Dad there, and no anesthesia
7. Needing medical care/the hospital.
8. Going all the way to Disney World only to do nothing/be miserable because of all my medical issues.
9. I often have to stop and rest while driving, I can't talk on my vent, I have a soft voice off my vent, and I am afraid of being seperated from Dad.
10. I am worried that we will be in line and I will urgently need the vent, need suctioned (happens frequently and sometimes without warning), someone will pull/knock loose a tube, and Dad will not be able to get to my equipment
11. Being really bored while everyone else eats (we do counter service-budget meals)
12. Bathrooms. I have to have pretty big bathrooms. Mom needs a higher toilet. Dad has to cycle through me and Danielle. It can be quite difficult to 'hold' the handicapped stall long enough for all of us to get through...

So, how did I resolve my concerns? How much stuff did we take? What adventures happened leading up to our trip? Stay tuned...

Christamae

Next update: How Everything Came Together- Page 1, Post #7

 

[natale1980]

WOW! Can't wait to read your TR. I thought that driving 24hours was rough. I can't imagine being in a vehicle that long.
I hope you had an amazing trip and I would like to be along for the journey. Count me in.

-nat

 

[serendipity]

Wow you are one strong woman! I cannot wait to read more about this trip and see how everything turns out. Best of luck and wishes!

 

[chiefdragon]

I can not wait to read the rest of your report. You and your family sound amazing.

 

[Disfan3]

WOW!

As a close personal cyber-friend of Zzub...Lala AND real life friend of JAMAL...I must say...and I think they would concur....

They've got NOTHING on you. Bless your heart and soul. I am so happy you have found a way to express yourself through writing. What an amazing talent you have. I can somewhat relate to all your anxieties as I teach high schoolers with moderate to severe disabilities. These kids are also very medically needy at times, so I can understand your troubles while on your trip and on your drive.

I am also SO HAPPY to hear that DISNEY is a place you can feel "less disabled... and looked down on." That warms my heart and makes me so proud to be a DISNEY fan right now. I will continue to look for future installments so please...KEEP WRITING~~ I can't wait to read of your magical journey

 

[DebIreland]

Christamae,

You've made an excellent start to your TR. 6000 miles??!! Wow! Your Dad and Grandma sound like amazing people - I'm so glad they are there for you, your Mom and sister.

I love your writing style and I'm really looking forward to more...

 

[eternaldisneyfan]

I think background is important to understand what an incredible opportunity this was:

This trip first came up when we were refinancing our mortgage. We had to do this because the rate was changing from fixed to adjustable. We live on a very fixed income and only manage because of my Mom's incredible budgeting.

Also we really needed a new van. We have had the big red van 11 years. It has driven from Oklahoma to Florida 3x, Oklahoma to California, and on Danielle's Make-A-Wish road trip. Dad has replaced the engine twice and various other parts. The real decision that we had to get a new car happened on May 11th. I had just been released from UCSF after treatment for a blood infection (one of my worries) and sent home on IV antibiotics. It is very important that these be delivered on time. It's late, we're in Ripon (45 minutes away). Then there’s a strange noise like water dripping. Then a little louder with a little grinding. Then BOOM and the car sounds like there’s rocks in the engine. Dad pulls over to investigate. Turns out the water cooler blade broke-then a piece broke off and tore through the radiator hose. No way the car is going to make it home. Dad alternates driving and coasting on the side of the road. We limp along to the nearest exit. Fortunately there is a large turn out area where we have room to unload. Everyone is trying to figure out what the heck we should do...Thankfully, after a few calls to a friend from church-he brings another church ladies mini-van and cycles us home.

Since we live on a fixed income, the refinancing is our only chance to get a car. We have three electric wheelchairs so modifications are mighty expensive. Preliminary research has an estimated price of van and modifications at at least $80,000! The refinancing company wants our number now!! So, we give them the number...Further research yields a much cheaper alternative in this:

The base price of this is only $50,000 and has lots of room for 3 wheelchairs! We quickly found a dealer and arranged to buy the car. Unfortunately, it wouldn't be available until after Danielle was back at school. But with the extra money-we could rent an RV. This is was the first-we might go!

Just two days later (June 10), I was sent back to the hospital with a suspected blood infection. All hopes of Disney were dashed. I wouldn't recover in time. Nope-can't go...But it turned out to be a false positive! And since I didn't need IV lipids anymore, my port was removed-eliminating one of my worries. I also had a new gj tube placed-so another worry gone. This hospital admission actually made the trip more of a GO!

We came home and even though the trip wasn't for sure-I started planning. dclfun eased my worries about not doing anything/being miserable by telling me about GACs. I mapped all the Companion bathrooms and used a WDW bathroom guide I found a link to on the dis to put how many wheelchair stalls each had and which were crowded and less busy. Then Mom said she just couldn't find an RV and we had to have an RV. We can't go

Just two days later, we got a call back. There was an Fun Mover!

Notice the lift on the back? Now, where to stay? In my previous Disney dreamin' days, I found a wheelchair accessible house for rent. It was a long shot because it booked fast.

The following is one of the reasons I called this a miracle trip. There was only one opening until December. The opening was-

The only two weeks we could go

And because it was a late booking, we got a discount!

The final checkmark needed to come from the doctors. My pulmonologist said we should be fine with precautions. I would need my ventilator and oxygen over 2000 feet. Danielle would need oxygen at 2000 and her vent at 4000. I checked my potassium and it was good. We both got broad spectrum antibiotics. I filled my second pain med prescription and nausea prescription. We got some capris and other clothes. Ice packs and fans to combat the heat. A canopy for my wheelchair to help with the sun. My parents, with the help of my wonderful UCSF specialists, were able to get all the supplies I needed and finally got me my second ventilator

Dad put his skillz to work modifying the fun mover. He took out the seat and filled in the step with a wooden platform so Danielle and I could sit in the front. He made tie downs from cargo straps. Established pathways for the oxygen. And built a rolling platform for Danielle's ventilator and oxygen concentrator.

I practiced and was pretty good with the cruise control feature on my chair. Instead of having to hold pressure on the joystick, you just press it forward to the appropriate speed. In the parks, I would always be side by side with Dad...

So with most of my worries eased and everything miraculously falling into place, we were set.

Besides what you see, there were 2 coolers in the bathroom, a bath chair, and every cabinet was full! I told you we beat Lala

I was in awe that-
In

Just

Over

A

Month

An impossible dream became a reality and a trip planned!! WE WERE GOING TO DISNEY WORLD!!!

Up next: To Needles! Travel woes-what were we thinking???

To Needles! What Were We Thinking??- Page 2, Post #27

 

[eternaldisneyfan]

Thank you to Natale1980, serendipity (I loved your report), chiefdragon, Disfan3, and DebIreland for your kind comments and for posting! I hope I can live up to your expectations...

I enjoy writing and am not a summarizer. My family is always begging for the Readers Digest version The only writing assignment that I made less than a B+ was a summary assignment...

So be prepared for details, diversions, and a little aversion

Christamae

 

[UtahMama]

I have been wanting to write this report for awhile (July 2006)...but I was intimidated. How do I compete with Lala, ZZUB, jamal, and the meanest mom? I can promise you that this report will be like nothing you have ever read...

Ahem!





Cant wait to read more!
You ROCK!!!! What a set up you had there!!!!

Most important, What kind of snacks did you enjoy for 6000 miles?
(Why do I always ask that?!)

 

[Joanna71985]

Wow, that is something. I think that was amazing that everything fell into place like that. I can't wait to read the rest.

 

[eternaldisneyfan]

UtahMama said: Ahem!

and of course the more recent but just as delicious UtahMama?

Is that better

 

[serendipity]

Yay!!!! You had me there for a minute! But you're get to go to Disney woooo hoo I can't wait to hear how everything unfolds and the anticipation is building! What a wonderful trip to share with your family

 

[eternaldisneyfan]

I have followers
And UtahMama has graced my thread...

UtahMama: Actually I can't really eat anymore (tube fed) but I do enjoy the occasional liquidy snack ...I did get two delicious snacks at Disney...For everyone else there was the healthy side-fruit, Nutri-Grain bars, yogurt and then the good stuff- pudding, chewy chocolate chip granola bars, cheez its, goldfish, Graham Crackers, etc

Joanna71985: Thanks for joining

Serendipity: I wondered the whole time, too...but it happened!

I have the whole road trip up written already. I will post those chapters every couple days...

In the next chapter, Grandma gets a very special phone call that makes the trip extra special for her

 

[UtahMama]

Is that better

Hee hee, I'm honored!

 

[blue_river]

Christamae,

Fantastic start to your trippie Count me in as a subscriber!

We're driving to WDW this summer (22 hours) so I'm anxious to hear all about your trip.

Sounds like you have an amazing attitude and a wonderful family

Can't wait to read more.

 

[jamal]

Christamae, I have a lump in my throat, a tug on my heart, and feel like the puppy in the back of the car who can't wait to go on the trip.

Thank you for taking us on your journey.
This is an honor.

Yippee!!!!!!!!!!!!!!!!
Jamal

 

[Bust*A*Stitch]

Christamae, I am in awe...

Hope you enjoyed the trip.

=D

 

[eyeheartgoofy]

Great start! Looking forward to joining your adventure ... (because I always feel like I'm travelling along with these great trip reports!).

 

[eternaldisneyfan]

blue river: Thanks for joining the journey...Driving is always adventurous and memorable

Jamal: Thanks for hopping in. Be prepared to stick your head out the window and enjoy the breeze on this wild journey

Bust*A*Stitch: I did enjoy the trip...though in the first few days we questioned our sanity

eyeheartgoofy: Thanks for hopping on the bandwagon

All right my fellow travelers, the first travel day will be posted Monday (23). I have three different journals and need to merge them in a way that makes sense...

Thanks,
Christamae

 

[Lan]

I am enjoying your trip report. Can't wait for more.