Whole bunch of questions PLEASE ease my stress

[scrappinbear78]

OK, I have a bunch of questions that are now starting to come up as we get closer and closer to our family vacation at DL. When we first planned this trip 2 years ago, none of these things were even a concern but with my husbands declining health and my Gastroparesis (paralyzed GI system...it doesn't work and just had my stomach, a portion of my esophagus, and a small portion of my small intestine removed which didn't help me) they have now become an issue.

1. I am on TPN, for those who don't know what that is it is IV feedings through a central line. My TPN has to be mixed and delivered on a weekly basis which means that I will need at least one if not two deliveries while we are at Disneyland. We were going to put some food in the hotel room as well...right now my TPN takes up a whole small dorm size refrigerator, would the hotel provide another fridge in order to store my "food" in? Also, would I be able to have a delivery to a hotel for my supplies? Right now my supplies are being delivered by the companies delivery people and don't know exactly how it will be delivered down there...I will be asking this week, but just want to make sure that I will get my supplies. Is there one hotel that is better then another? We currently have a suite at PPH, but that can be changed to another if it is going to work out better....there are 5 maybe 6 of us that will be staying in the room.

2. Since my "food" is through my central line and I am unable to eat via mouth would I still have to pay for a meal just to sit and enjoy the time with my family? We avoid all you can eat places at home because they always make us pay for the full price even though I don't touch a single bit of the food. I know that there is entertainment at the DL all you can eat people that I would love to be with my family for, but if they are going to make me pay full price for nothing but the "show" I won't be going with them.

3. This year has been a horrible year so far for me regarding my health and I have been in the hospital for over 5 months this year (not all at the same time), if by chance the need arises what is the best hospital to go to around the area? Usually I am admitted for dehydration and poor nutrition because of extreme nausea and vomiting (sorry for the gross description). I don't want to be going to a hospital that is going to think that I am just drug seeking, but rather to actually help me get over the bad period if it happens while I am down there. Usually I only get sick during the spring and summer because of the heat and not being able to get enough fluids in and I know that Cali is known for warmer winters then I am used to.

4. Where is the best place to rent ECV's from?

5. Would it be better to stay onsite at PPH or one of the offsite hotels? Keep in mind we will have at least 5 people maybe 6 and 3 ECV's.

6. We have 2 kids and we are waiting to hear if one of their friends are able to go...so possibly 3 kids, what is the best way to make things a blast for them with all 3 adults being disabled? My disability doesn't ALWAYS keep me from walking, but to walk as much as we would in a day at Disney would be really hard on me so rather then make everyone stop ever little bit thought it would be easier to use an ECV. My hubby and my dad are semi ambulatory, but REQUIRE the ECV for anything (they can't even walk in a store). We want the kids to have fun, but don't think I am willing to let them just "go" by themselves around the park and I know there are rides that we will all want to go on, so what would be the best plan of "attack"? We will be at DL from Dec. 19-27 so we should have plenty of time to see everything and don't have to cram it all in one or two days.

OK, I think I have asked all the questions. If anyone has any other tips that I haven't asked a question for, please include it. We have NEVER taken a family vacation and are so excited for this one and only chance, but I am so nervous about what to expect.

 

[krisnme]

Scrappinbear, sorry I can't answer even one of your questions, but I just wanted to wish you well and hope you have a great family vacation. there are wonderful people who will be able to help you I'm sure. Bless you.

 

[Cheshire Figment]

Although not a regular at DL I have a few comments.

At WDW there is a special "Medical Reservations" number which is used to block off accessible rooms and work, in advance, to provide for special needs. There may be such an office at DL also; try to contact them, at least about the added (or larger) refrigerator.

You should be able to have your supplies delivered directly to the hotel. Work with your supplier and make sure they have your name, as well as the name and address of the hotel and your arrival date. The hotel will accept the items and deliver them to your room.

Check Post #14 of the disABILITIES FAQs about ECV rentals in the Disneyland area. You can get directly to the FAQ by clicking on the link in my signature.

I would definitely recommend staying at an on-site hotel; it is a direct connection (through DTD) to the parks and no outside transportation required.

Normally the only time there is a charge for a non-eater may be at a buffet. And even then you can talk to either your server or a manager explaining that you cannot take any food by mouth and more than likely any fee will be waived. If it is a location with Characters (such as Goofy's Kitchen) they may charge a small "entertainment fee" of about $5.00.

 

[SueM in MN]

I can answer the question about rental of ECVs. These are the most frequently recommended companies for DL.

ECV and Wheelchair Rental at Disneyland:
Several people, here and on other boards, have recommended:
Deckert Surgical Supply in Santa Ana at (714) 542-5607 (I have never found a website).
Orange County Medical Supply at (714) 956-4690
Both will deliver to your resort.

For the refrigerator question, that would be a reasonable request and you certainly need it because your TPN requires refrigeration. I'd suggest talking with your supplier. They may have run into the situation before and be able to help get it sorted out.
If a refrigerator is supplied in all rooms automatically, it would be fair to provide you with another for your medical needs since you would otherwise need to use the supplied one or the TPN.

For meals with entertainment, I don't know for sure about DL, but WDW may charge a smaller 'Entertainment' Fee for guests who are not eating. They are not likely to confirm this for you ahead of time because, unfortunately, there are people who will say they can't eat to avoid the fee. So, those things are usually handled at the restaurant (at least at WDW).

For the question about hospital, I will leave specific recommendations for people who visit DL. You may want to ask your doctors - medical people frequently have knowledge of hospitals in different areas thru contact with other medical staff at conferences, etc. So, your doctors may have some recommendations.
To avoid any question or concerns that you might be a drug seeker, have your doctor write a summary of care for you before you go with some information about your condition that would be helpful for any doctor that needs to care for you. Include the doctors contact information. Hopefully, you will not get sick and won't need it, but if you do, it will make things easier.

I didn't see how old the kids are, but children over the age of 7 can ride unaccompanied. Those under 7 need to be accompanied by a person over the age of 14. If the children are old enough and you feel comfortable, I'd say go for it and let them ride some of the things you can't while you wait outside. We let my DDs go by themselves in the same park we were in once the oldest was over 14 (her sister was 9, but is disabled). With cell phones, it's pretty easy to keep in touch. And, then you can ride the things with them that everyone can do.

 

[SueM in MN]

I was typing while Cheshire Figment was posting - took me a while because I was also getting DD ready for bed.

Anyway, it looks like he and I were on similar paths in terms of advice.

 

[scrappinbear78]

Thank you so much for the answers so far. When we get a little closer to the departure date I will definitely contact my supplier about delivering to the hotel. My DD's are 12 and 10 and the friend that we are waiting to find out if she can come is 14. Both of my DD's each have a cell phone, but I am so afraid to just let them "go" in such a busy, unfamiliar place. At home in our small town it is fine for them to go around without supervision, but in a place that is crowded and full of strangers.

What should our plan of attack be in the parks to make sure we don't miss something?

 

[WheelieBigDisFan]

As far as hospitals go I would recommend St. Joseph's Hospital in Anaheim or University of California, Irvine Hospital. Both of them are a short drive from Disneyland, but have amazing care. I had one of my spinal surgeries at St. Joes and the care provided was amazing.

As for not missing anything at DLR, I would say to visit Fantasyland in the morning after the park first opens since the lines there get long later in the day. You would also want to visit Space Mountain and Star Tours early to avoid longer waits on these rides. After that, just choose a land and ride/see what you want in that land before moving on. By sticking to one land at a time you avoid going back and forth across the park all day. DLR basically makes a circle, so you can start by going right to Tomorrowland, or left to Adventure Land, and work your way through the park.

Good luck and have fun!

Mandy

 

[Cheshire Figment]

I would think, with those ages, that you can get a feel for how they act on the first day and then go from there. As a CM I am aware of the level of undercover security that Disney has in the Parks (and Downtown Disney) and it is much higher than most Guests realize. If you are staying on-property there are no public streets to cross. As long as the girls stay together there should be no problems in allowing them to go to the Parks on their own.

 

[Lisa71]

I live in Southern California and DL is a fun place, but it is not like WDW for sure!! First, staying on property is a great idea since not only are you close to everything, but the level of service at the hotels is amazing. Second, call and tell them about your TPN and you can even ask if there is a larger fridge,etc. If you need a hospital, those recommended are fine, and Disney will guide you. You can also arrange for a visiting nurse to come to your room if you need a dressing change for your line, etc. Relax, have fun, and enjoy your trip.

 

[retired and happy]

Year before last my DW was on IV antibiotic while we were at WDW. I had been trained by our home visiting nurse on how to change dressings and how to take and submit blood samples each week. Her supplies were delivered to Ft Wilderness weekly, but with a MH we had refrigeration to care for the medicines.

Regarding doctors/hospitals, our doctors at home gave us names to contact should the need arise for us or our special needs children. When a need did arise, the EMT's took our child to the best hospital in the area.

Best wishes to you and your family and enjoy your stay at DL.