Chronic Kidney/Ureterostomy Needs

[cantwait4]

This is our first trip to Walt Disney and I was wondering if anyone can provide some advice for us. We have a five year old who has chronic kidney disease and has an ureterostomy, which means her urine comes straight from her kidneys into a pull-up. We are hoping to attend from 9/21-9/28 (starting the parks on Sunday the 22nd). The only place we have taken her where she has to do a lot of walking is the NC ZOO which is nothing compared to this and she did fine but it was well shaded. (SHE DOSEN”T LIKE THE STROLLER IDEA)! She says she is a big girl now… Any tips you can provide to help me keep her hydrated, what WDW has to offer to help her enjoy this week and what are the best restrooms because we change her about every couple of hours. We are planning to visit every park once, but MK which will be for 3 days. We are planning brakes; naps and not a high pace “race” if you will running from here and there for FP. Our approach is do the most popular first obtain a FB right after the right for a second right and go with the flow. I was wondering also would it be better to bring her stroller or rent one. Also she has a Shellfish allergy which I have had noted in our ADR’s, other than reminding them when we arrive for our meal is there anything else we need to do to make sure she is safe.
We also have a healthy seven year old, who is going to want to GO GO GO– because she loves rides.

 

[geek+nerd]

Definitely take the stroller. She might say she is a big girl now, but I bet you anything that she'll gladly ride in the stroller when she's tired enough

As far as changing her goes, you would probably be better off doing that at the first aid station in each park. It will be cleaner and you can take your time.

Have a great trip!

 

[lanejudy]

Welcome!

Well, my first thought was a stroller-as-wheelchair thinking she probably tires easily (my DD does with kidney plus other issues), but if the child won't use it that might not work out. There is a LOT of walking (most people do 8-12 miles per day), so even though she thinks she is a big girl, she might be glad for a ride by later in the day - or later in your trip if not the first few days. The 7-yr-old too. If you have an umbrella stroller, you might want to bring it (it can be gate-checked for free on airlines), or you can rent from WDW - those are hard plastic and not too comfy but for a tired child probably better than trying to carry her.

I'd suggest using a touring plan, modifying it to fit your needs but use the info to determine low crowds, etc. Sounds like you already plan to pace yourselves and take breaks. Don't underestimate the value of a non-park day hanging at the resort pool, kids love it as much as the parks. We find it best to try and stick with "normal" schedule - waking, meals, bedtime - as the late nights of vacation just don't work with our DD. Stay hydrated - bring re-usable water bottles to the parks and you can get free ice water from any CS location; we bring MIO or individual powdered drink packets for flavor.

To change a pull-up...will she stand while you do this in a normal restroom (handicapped stall)? If you need a private place for her to lie down to change, the First Aid centers in each park have private rooms with cots.

With the shellfish allergy noted on your ADRs, the chef will come to speak with you about safe foods. At CS (counter-service) locations you should ask for the allergy binder to check for ingredients.

Enjoy your vacation!

 

[amykathleen2005]

What stage kidney disease?