|07-04-2009, 10:24 AM||#1|
Earning My Ears
Join Date: Jul 2009
First time 'dream' trip to Disney
Hi there. I found this place today and am hoping someone can help me out with some information. I've looked around on here - but still am not sure about my questions.
We will be traveling in 2 weeks to Disney World with our 14 year old son - who has chronic health issues (CVID mainly). He just got out of the hospital (hit 45 days for the year) a couple of days ago - and this opportunity for us to go to Disney came up. This will be a dream come true for him - something he has asked to do but due to his health and its related issues - we've never been able to make it happen for him.
The concerns we have are:
1. He is not able to regulate his body temperature - so we know that the heat will impact him - but have talked with his doctors on how to deal with this.
2. He tires pretty easy. Partially due to his condition and partially due to his medications. This also gives us concern because we will need to make sure we are cautious about his time in the sun (again, due to problems with the medications he takes). We wonder if we need to be more concerned about him being able to 'hear'. He has a moderate hearing loss in both ears - but we don't know if there's any reason to think that why 'normal' hearing aids and 'we know how to help him out' things won't be enough?
3. This is a 'first' for us - so we are planning the best we can - but would appreciate ANY tips from anyone who has done "Disney" with a child who has serious medical conditions.
4. We normally carry our 'bag' of medical info with us whenever we travel - but wonder if there's any need for anything 'specific' when at Disney?
There are other health issues on our radar - but those are at the front of the list!
Thanks in advance,
|07-04-2009, 11:02 AM||#2|
Earning My Ears
Join Date: Sep 2005
We have traveled to the world with our DD10 who has CVID also. In fact we just returned from the IDF National Conference in WDW- it was HOT! Some things we use to keep her cool were:
1. Get the GAC pass to avoid standing in long lines (also keeps her away from being stuck in line by sick people) and usually they are indoors
2. Use a stroller/wheelchair- she was able to sit whenever she needed
3. Those battery fans worked great to cool her also
4. I brought a lightweight sweater for if she got cool while inside with the AC.
5. If the medicine is affected by heat be sure to pack it in an insulated cool pack or you can store it at the parks' First Aid. Check with your pharmacist about how to properly store the medicine as some cannot be right near a freezer pack.
6. We found that DD (also has a problem regulating body temp) really could not tell when she was too hot so I had to really keep an eye on her- pushing fluids all day helped.
7. DD swears that the cooling neck bands work for her- I do not like them but she loves them.
She is not able to go in public pools so we just went back to the room to rest in the afternoon. Some other things we do are use Purelle or hand wipes after every ride and before eating, get free ice water from cs restaurants and mix lemonade packs into them.
|07-04-2009, 11:18 AM||#3|
Funny thing is now my 17 year old naps almost every day and so do I!
Join Date: Aug 1999
Location: Massachusetts Strong!
Do you really have to go now - July and August are the hottest, most humid months at WDW, crowds are incredible (and a GAC only works for attractions, not restaurants, bus lines, etc) and if someone has a problem regulating body temp, I'd think it would be too risky.
There's a lot of outdoor time that can't be avoided, as in, waiting in line to go through the security check to get into the park, waiting for transportation, waiting for the afternoon parade, etc.
If this is your only option, be prepared to get to the parks at rope drop, use fastpass where available (works better than a GAC sometimes, and is easier to plan around) leave the parks in the early afternoon for a break at the resort, and then head back around sunset. This is what I do to avoid the hot sun (melanoma). But I don't have a problem with heat and humidity, and boy is it brutal in July and August!
July '13 - CBR Aug '14 - PC
Mar '13 - PC Aug '12 - PC (Best Trip Ever!)
Aug '10 - PC June '08 - ASMo (school trip)
Aug '05 - BC Aug '04 - PC, AKL
Oct '02 - AKL, POR May '99 - CBR
May '96 - CBR Dec '80 - offsite
|07-04-2009, 01:09 PM||#4|
Earning My Ears
Join Date: Jul 2009
Thanks a bunch for the replies. My son just got out of the hospital (was in for 2 weeks) and this trip came to fruition due to a conference my husband has to attend in the area - and the fact that Disney is offering a special for the military. Otherwise - we'd never be able to afford it!
He has other health issues that are 'yet diagnosed' as his most recent hospital stay landed him in surgery for biopsies of growths they found.
We are going in with the 'we will make the most of what we can' - and he is SO excited - and I just pray we are 'health ok' during those 4 days!!!
We were told (maybe someone here can confirm) that even at the disney discount motels that refrigerators are available for the room if you need them for medications?
|07-06-2009, 09:48 AM||#5|
Join Date: Feb 2009
Location: New Hampshire
With the severity of his health conditions, have you ever considered contacting the Make-a-Wish foundation? A friend at work recently went on a Make-a-Wish trip with his son and they couldn't say enough about it. Going through them might make it easier to go during a time of year where he's less likely to have problems with temperature. It really can get VERY hot in the summer.
Me DH DD(16) DD(14) DSD(32) DSSil (41) DGD (newborn) DSD(30) DGS(4)
Multi-Allergy & Autism Dining Reviews: February 2014 * DL & LA July 2013 * February 2013 * August 2012 * February 2012 * August 2011 * August 2010
February 2014 AKL: me, DH, DD15, DD13 * July 2013 DL offsite (Tropicana): me, DH, DD15, DD12, DSD30, DSSil * February 2013 WDW Poly: me, DH, DD14, DD12
August 2012 WDW FW Cabin & AoA Nemo: me, DH, DD14, DD12, DD12's BFF11 * February 2012 WDW Poly CL: me, DH, DD14, DD11 * August 2011 WDW YC: me, DH, DD13, DD11
February 2011 WDW Poly CL: me, DH, DD13, DD10, DSD28, DSSil * August 2010 WDW POFQ & Poly CL: me, DH, DD12, DD10 * June 2010 WDW Pop: me, DH, DD12, DD9
December 2009 WDW POFQ: me, DH, DD11, DD9 * February 2009 WDW Pop: me, DH, DD11, DD8 * August 2008 WDW SSR: me, DH, DSD25, DSD24, DD10, DD8
September 2007 WDW Pop: me, DH, DD9, DD7 * April 2002 DLR offsite: me, DH, DSD19, DSD17, DD4, DD1.5 * June 2000 DLR offsite: me(pregnant), DH, DSD17, DSD15, DD2
January 1994 WDW offsite: me, DH, DSD11, DSD9 * January 1992 WDW offsite: me, DH, DSD9, DSD7
|Display Modes||Rate This Thread|
|thread||Thread Starter||Forum||Replies||Last Post|
|Disboutiquers Part 15 Kids Disney Boutique / Customs Clothes psst..we sew||teresajoy||Disney for Families||3674||10-03-2014 11:48 AM|
|Disney T-shirts with Canadian Flagfirstname.lastname@example.org||Canadian Trip Planning & Community Board||47||09-05-2009 07:59 AM|
|How many more days until your trip to WDW? (Part 2)||ransom||Doing the Happy Dance!||3854||08-23-2009 10:03 PM|
|My first Trip Report June 2009. - Day 2 HS - DD - HS||Just-Pete||UK Trip Reports Board||15||07-18-2009 05:51 PM|
|Kick off our trip||BK190||Theme Parks Attractions and Strategies||6||07-04-2009 11:40 AM|