eternaldisneyfan
<font color=royalblue>Have an Attitude of Gratitud
- Joined
- Oct 1, 2004
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.
Here's the rest of our crews medical issues:
Mom- milder form of Muscular Dystrophy, uses electric wheelchair anytime she leaves the house, sleep apnea, stamina issues
DSis-ellindea here-uses an electric wheelchair full-time, sleep apnea, some pain issues, kidney reflux/bladder problems that can result in lots of bathroom breaks
Grandma- bad arthritis, enlarged heart, diabetes, and wet macular degeneration. Dad pushes her in a rented off-site wheelchair when we go on vacation.
Dad- bad sleep apnea, bi-polar (controlled pretty well with meds but really stresses about time---he doesn't need/would NOT get a GAC). Caregiver for me, DSis, and Mom
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...
This will likely be our only chance to go. We live on a fixed income. The only loan we can get is home equity and we have to refinance this year. It's now or at least 10 more years.
I am soooo conflicted. I know about GACs. I don't know if one could accomodate our family. Shade doesn't help too much and all of us need Dad so we can't seperate for long periods. Mom and DSis so want to go. The last thing I said was no...Dad doesn't--but if I was gung-ho about it, he would probably change his mind. Grandma is happy with whatever we decide...We went to DL but didn't enjoy it too much.
Some questions:
dclfun- I know you've gone to WDW with a vent and other issues like mine, what has Disney done to accomodate you?
What rides/shows are near the companion bathrooms? Are they all by the smoking sections?
Are there counter service restaurants with entertainment/interesting things around? **important that it has indoor, air conditioned seating
What if someone besides me, wants to go on a ride-would the GAC/accomodations count?
Will all the FP be gone by 2:00?
Are there any cool/shady spots with lots of room but no smoke for the fireworks?
How can I not get frustrated about how long things take/how little we're doing?
Any touring/time saving tips?
Any non-Disney hotels that are close, with big rooms, and soft beds?
Thanks for your help
Christamae
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.
Here's the rest of our crews medical issues:
Mom- milder form of Muscular Dystrophy, uses electric wheelchair anytime she leaves the house, sleep apnea, stamina issues
DSis-ellindea here-uses an electric wheelchair full-time, sleep apnea, some pain issues, kidney reflux/bladder problems that can result in lots of bathroom breaks
Grandma- bad arthritis, enlarged heart, diabetes, and wet macular degeneration. Dad pushes her in a rented off-site wheelchair when we go on vacation.
Dad- bad sleep apnea, bi-polar (controlled pretty well with meds but really stresses about time---he doesn't need/would NOT get a GAC). Caregiver for me, DSis, and Mom
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...
This will likely be our only chance to go. We live on a fixed income. The only loan we can get is home equity and we have to refinance this year. It's now or at least 10 more years.
I am soooo conflicted. I know about GACs. I don't know if one could accomodate our family. Shade doesn't help too much and all of us need Dad so we can't seperate for long periods. Mom and DSis so want to go. The last thing I said was no...Dad doesn't--but if I was gung-ho about it, he would probably change his mind. Grandma is happy with whatever we decide...We went to DL but didn't enjoy it too much.
Some questions:
dclfun- I know you've gone to WDW with a vent and other issues like mine, what has Disney done to accomodate you?
What rides/shows are near the companion bathrooms? Are they all by the smoking sections?
Are there counter service restaurants with entertainment/interesting things around? **important that it has indoor, air conditioned seating
What if someone besides me, wants to go on a ride-would the GAC/accomodations count?
Will all the FP be gone by 2:00?
Are there any cool/shady spots with lots of room but no smoke for the fireworks?
How can I not get frustrated about how long things take/how little we're doing?
Any touring/time saving tips?
Any non-Disney hotels that are close, with big rooms, and soft beds?
Thanks for your help
Christamae