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Old 05-29-2007, 01:52 PM
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connor'smom connor'smom is offline
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Default Just came home from Disney with my trached/vented son

We spent a week in Disney with my 18 mth old who is trached/vented. No catastrophes occurred. We flew on Southwest and received excellent customer service. Also, our marine battery died while we were there and we had to find a local respiratory company. That company, Pediatric Health Choice, was extremely helpful and even delivered the battery on a Sunday.

Anyway, though I had to plan for this trip months in advance to address my son's issues, it was a great trip and I am happy to answer any questions if anyone has any. We obtained a Guest Assistance Card at Disney and literally walked right on the rides. While in the Park I did see another child on a trach/vent and wondered if he was someone from this Board?

Please post or PM me if you need further information.
________
EFFECTS OF PAXIL

Last edited by connor'smom : 04-29-2011 at 11:11 PM.
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Old 05-29-2007, 02:52 PM
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I'm glad you had a great experience. We went in March with our trached and then 18 month old son--flew Southwest and had the guest pass at Disney, too. I hope it was relaxing!!
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Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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Old 05-29-2007, 03:08 PM
ColinP ColinP is offline
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We are planning a trip to Disney this Christmas. How do you go about getting the assistance card?

Nicole

Mother of Grace -6, Emma-4, and former 24 weeker Colin - 3 trached for subglottic stenosis.
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Old 05-29-2007, 03:24 PM
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I will add from my other trach message boards that some people have had issues getting this guest pass everyone raves about. Apparently one mother had issues because her child was in a stroller not a wheelchair. Also here that the park isnt really big on suctioning in the bathrooms (was there here I read that or somewhere else?)
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EMMA- CP,TRACHED, G-TUBED DEC 2004 AND VENT DEPEND JUNE '05, CORD ACCIDENT DUE TO MONOCHORIONIC MONOAMNIOTIC TWIN PREGNANCY
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Old 05-29-2007, 08:30 PM
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We're also hoping to go to Disney this December. We are planning on driving since I'm totally paranoid about the airline losing something important. Any information on what we need to think about will be appreciated. Karen
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Old 05-29-2007, 11:00 PM
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That's awesome! I want to see pictures!!
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Old 05-30-2007, 12:19 AM
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we just got back from disney also a couple of weeks ago.

We just showed a doctors note to get the guest asst. pass w/no problems. Even got a pass to use his stroller as a wheelchair and kept his emerg. bag and suction bag under the basket.

as for flying I suggest splitting up everything you need into a few different bags incase one gets lost you still have it in another bag. We overpacked of course but better be safe then sorry. We had to pay 60.00 extra for heavy suitcases. Anything over 50 pds there's a charge.
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3rd attempt for Jaw distraction surgery successful
airway is 85-100% open!
sleep study all good..
DECAN JULY 15TH!!!
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Finally home w/us since he was 7 months old.
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Old 05-30-2007, 10:44 AM
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Guest Assistance Card: We had a note from our doctor (that I prepared and he merely put on his letterhead and signed) detailing our son's condition, and stating that he was unable to wait for long periods of time due to his health and battery status! When you arrive at your first park, go to Guest Relations and present the letter, and ask for the card. When we arrived, I left the letter in the room but after seeing our son they didn't give us a problem. Also tell that that you use the stroller as a wheelchair. Not only was that stamped on our Card (along with a stamp that said "guest may use alternative access), but they gave me a red flag for the stroller which said "stroller = wheelchair." It was honored all over the resort, as well as by the transportation system (very important because we didn't want to have to collapse the stroller every time we got on a Disney bus). Everyone on the staff was extremely helpful, cooperative and obliging. The Guest Assistance Card was like gold.


Supplies: I fed ex'd a box of supplies to ourselves at the hotel in advance and it was waiting at concierge when we arrived. Call the hotel directly for the mailing address. I also had o2 (in case of emergency) and an IV pole (for his vent at night) delivered to the hotel by a local DME company (also waiting for us upon arrival)

Luggage: All emergency equipment was carried on the plane. I called SW's corporate office in advance, and they put notes on the reservation (as well as sending me a confirming letter) stating that all equipment was approved for use during all phases of flight, that his equipment did not count against his "2 carry ons", and that we should received pre-boarding. Though one of our checked bags weighed 100lbs(!), I convinced them it contained his medical equipment and that we shouldn't be charged (we weren't). In retrospect I should have had the corp. office put this in the letter.

No one cared that we suctioned him or did anything else. In fact, in Epcot the lady at America let us use a private office to give him a neb. treatment. You can also store equipment at the First Aid station in any park, though we didn't do that.

The weather was a little tough on him (we live in NJ) so he didn't do as much as we had hoped. He made out better at night. During the day he stayed in the hotel with our nurse.

I also suggest you read the posts at
http://www.disboards.com/forumdisplay.php?f=20

which addresses guests with disabilities.
________
Teen forced

Last edited by connor'smom : 04-29-2011 at 11:12 PM.
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Old 05-30-2007, 12:22 PM
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Quote:
Originally Posted by Mom2TwinsPlus1 View Post
I will add from my other trach message boards that some people have had issues getting this guest pass everyone raves about. Apparently one mother had issues because her child was in a stroller not a wheelchair. Also here that the park isnt really big on suctioning in the bathrooms (was there here I read that or somewhere else?)
We had Nathan in his stroller with all of his regular gear (suction and emergency supplies) and back-up equipment, and they just gave us a sticker for the stroller that said we use it as a wheelchair. We also had a note from Nathan's ENT describing his condition when we checked in to get the pass from Guest Services. We found everyone at Disney incredibly accomodating. We suctioned him everywhere and it was absolutely no big deal. Between Disney and Southwest, our trip was a piece of cake!
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Kristy
Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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Old 05-31-2007, 04:05 AM
Judy Judy is offline
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Default Disney

We have been to Disney World at least 25 times. We now go every Christmas and spend at least 3 weeks in the campground there. I have never needed
a Rx from our doctor for the guest assistance pass. Even before our children could use a wheel chair and we had a stroller all I had to do was show it to them and tell them about the medical equipment hanging on and in the stroller. I am sure a letter from the doctor would not hurt and might help.
The only folks that sometime give you trouble are the Disney Bus Drivers.
Even then they are doing their job in saying you must fold the stroller as it is not a wheel chair but when they saw the assistance pass on the stroller and
it said "treat as a wheel chair" with the dates of our visit, they used the tie downs for the stroller.

We will be in the Fort Wilderness Campground from December 14 til around
January 4, if any of you are down there during that time. Send me an e-mail if you will be there and I will give you our cell phone numbers and maybe we
can meet each other. That would be great.

E-Mail us at: krhammett(@aol.com)

God Bless You all.

Judy, Ken and the 4 very special Angels
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02, leg. bld., hear. impair,J tube.
2 Angels in Heaven: Kiley and Colton
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