I'm Gettin' NERVOUS!!!

[joshsmom]

In a nutshell, here's my worries: DS7 had a kidney transplant in Sept 2003 (I know, some of you already know this, but it figures into my dilema). I had this GREAT idea to take a trip to WDW just before he has to go back to school after the holidays. Got grandma in on it--she's excited, I'm excited and we're having trouble keeping it from him. So last night we're coming home from a Christmas gathering and we were listening to the Lion King. DS says "mom, I'm glad we're not going to WDW for awhile, I don't think I could walk that far. I get so TIRED!!" My heart SANK right then and there. I know he's moving slower since surgery and he's also gone from 54 lbs to 80 lbs due to his Prednisone. I KNOW he will have a good time once he's there, especially since he's finding out about the trip on his birthday, which is the day before we leave. I don't want to cancel just because of his remark. His doctors feel the trip will actually be good for him--maybe get him a little more active. I'm probably over-reacting to an off-handed remark made by a tired child, but I REALLY want this to be special for him. Any thoughts? I always come here when I need support!!!


********UPDATE************

Today I got some "disturbing" news. Josh's labs have gone crazy and the doctors don't know why. To make a very long (and heart-breaking) story short, the doctor asked me how difficult it would be to CANCEL our trip!!! Well, my heart says that it would be VERY difficult (if not doggone impossible!!!!!) I know that his health is the most important thing.

I would appreciate any prayers, pixie dust, and support you could send our way!!

 

[SoccerNut]

If he gets tired get a wheelchair. I think the ardenalin will overtake the tired feeling. i'm sure he'll have a great time!

 

[swilphil]

If he feels uncomfortable in a wheelchair, you might see if you would ride in the WDW rental stroller. They are pretty big, kind of like jogging strollers. Believe me, he wouldn't be the first 7 year-old to ride in one.

Also be prepared to take breaks, go to shows, sit down and enjoy the scenary. Don't worry about getting up early or staying until closing. If you don't see everything this trip, you can go back when he's feeling better.

In the weeks before your trip, can you try to get him to do a little more walking. Even if it's just at the mall, or parking farther away in the parking lot.

You also might check to see if you are eligible for any handicapped access while at WDW. There is a great disabilities board here, or you could call WDW directly.

 

[RUSHBURY]

Oh how I feel for you - but 7 year olds do make a lot of silly remarks and without really meaning them. I'm certain he'll have a great time and that the excitement will overtake the tiredness. I too have a DS7 and I truely hope you have a wonderful time when you go and that you can go back to being excited by the prospect and can stop worrying. Take care and all the very best.

Helen

 

[jcemom]

Do you think he may have said that just because he isn't expecting to go? ( I know what I mean but am not sure how to explain it... ) Kind of like when you know you can't have something, you try to convince yourself that you didn't want it anyway. I know that I have heard my kids do that. Maybe they wanted a toy and were told "no," then later would say "I'm glad I didn't get that toy because it is stupid anyway and would probably break too easy" or something like that.

I'm sure he'll be happy to be going...who wouldn't, right?

 

[joshsmom]

I really apperciate the responses I have gotten to this. I'm feeling much better, as I knew I would. People here understand and help SO much. I know Josh will have a fabulous time. I think I will offer him a wheel chair or stroller though (his choice). That way if he DOES get really tired, we can push him along. Also, we plan on taking rests throughout the day, whether it's sitting down to eat, watch a parade, or just sit in a quiet spot.

I don't come to the boards for support only, I also come here because grandma and I are the ONLY ones that know (besides all of you!!!) So I have to go SOMEWHERE to talk about going, or I will just plain explode!!! Since that doesn't sound pleasant, I will just continue to post and live vicariously through others that are closer to going than we are!

Thanks again to all of you for making me feel welcome here and for such wonderful support! Happy Holidays!!!!

 

[erinz]

I agree that a wheelchair or stroller is the way to go. Last week we were in the parks and my 9 yr old DD got a bad blister on her foot and couldn't walk. We got a wheelchair and it was great. She had great fun riding in it. You just park it outside of each ride and it's there waiting for you when you're done. Good luck!

 

[nativetxn]

Bless his heart. He will have a blast once he is there and as someone already mentioned, just get a wheel chair when he gets tired.

You don't have to tour the parks in commando mode everyday. Follow his lead, go back to the resort when he needs a rest.

Most of all, have as much fun as possible and make some <b>magical</b> memories.

Katholyn

 

[Kuffam]

I hope you have a fun time. Ask him if he wants a wheel chair or a stroller (if you driving a wagon might work good too.)

As a nurse I would suggest that you be careful around crowds. The medications they usually put people on after transplants makes them more suspectable to illness. But follow the basic rules (wash your hands, steer away from people who are coughing, sneezing, ect.)

I hope this doesn't worry you. If your doctor says it would be good for him, go and have the time of your life!

 

[SueM in MN]

I sent some pixie dust on your disABILITIES Board thread. Sending more here.
If your trip is stil able to occur as planned, the WDW strollers actually come in several sizes. The largest ones fit up to a small 12 year old. If he needs to use the stroller in lines because he gets too tired, you can get a Guest Assistance Card at Guest Services in any of the parks that wil allow a stroller to used as a wheelchair. This allows a child with medical issues to bring the stroller in lines and buildings where strollers are not usually allowed.

Also, you can rent special needs strollers (like large umbrella or jogging strollers that can hold people up to 100-125 pounds)or pediatric wheelchairs from these places:
Care Medical:
http://www.caremedicalequipment.com/
Phone (407) 856-2273 • Toll Free U.S and Canada (800) 741-2282

http://www.all-about-kids.com/main.htm

WDW has some child size wheelchairs to rent and at the WDW resorts, but there is no guarantee that they will have one when you need it. A 7 yr would probably not be very comfortable in an adult wheelchair. Usually the armrests are at about should height and since the seat is too deep, the kids either have to sit on the edge of the seat with no back support or sit all the way back, but then their legs are sticking straight out. It's kind of fatigueing to be sitting like that all day.

 

[joshsmom]

For those of you that don't read the disABILITIES board, I just wanted to update you on Josh's continued battle to go to Disney. BTW, he still doesn't know that we're going!!!!

At any rate, went to the hospital today for lab work. The people at the hospital, no matter how good they are, don't believe. You can clap until your hands fall off, but they will never believe. We believe and after lab results today, it looks like we are going to WDW in January!!!! I was SO happy I wanted to do cartwheels out of the hopsital.

Please let me say it again--You GOTTA BELIEVE!!!! Thanks to everyone for their prayers, support, and pixie dust!!! The nurses "warned" me that Josh could still "take a turn for the worse" and not get to go--they don't BELIEVE!!!!!

Second star to the right and straight on 'til monring!!! Here we come!

Have a Blessed Christmas!

 

[jcemom]

I am SO happy for you!

 

[Lollipop Mom]

that is wonderful news! ITA....you can't stop believing. I'll certainly say a prayer for his continued good health and a fantastic trip for the three of you!

 

[Mackey Mouse]

Hugs and Merry Christmas to you and your family....I am so happy to hear that Josh is doing better..

I am just sort of thinking out loud here, maybe you could ask the doctors for a referral in FL... just as a back up.. I know nothing will happen as I do believe that Josh will be fine and have a great time in WDW... but I am always one to be prepared if possible..You know once a Girl Scout, always a Girl Scout..

Good luck and have a wonderful time..

 

[2angelsinheaven]

Sending some pixie dust and prays for a safe and wonderful trip!

 

[Grumpy92]

Our thoughts and prayers are certainly with you. As I know this will be a wonderful trip for all of you.

As everyone has said dont push yourself. After lunch think about going back to the resort and taking a nap, resting or just sitting in the lobby taking in the resort.

If you havent already, please let Disney, CRO, Dining or the Front Desk know what a special child you are bringing to WDW. I can tell you as a cm when we heard a story like this we wanted to make the trip extra magical. We would fill the room with balloons and leave special gifts for them. So DO let them know.

I know you will be going on this trip and making many magical memories.