Wish Trip

[Anne MN]

Well, as you can see by the counter, we were supose to go at christmas. We are now going to have to go by the end of September.

DD is now in the process of having all the work ups for having a heart transplant. Once she get's listed I was told that she should not leave the state.

We are just waiting for final approval and that should come in the next couple of days-

I do have questions about crowds and heat-

what are crowds like after labor day?

is it still really humid?

I am assuming that it will still be shorts weather! ( We live in Minnesota, and when we have gone in Dec, I have worn shorts!)

any suggestions and answers would be great!

Anne

 

[SueM in MN]

Lots of pixie dust to you and your family.
I can't really answer a lot of your questions, but a few years ago, DH, youngest DD and I went to WDW in September. The weather was very nice (although it did rain almost every afternoon) and we wore shorts every day. Even though it rained, it was not so hot as in July (or even in May and June), so the humidity was not so oppressive.
The crowds were non-existant. We have pictures from Epcot where there is not a single person in view and some from MK where the only people are in the distance. So, I don't think you'll have to worry much about crowds.

 

[don8life]

Anne,
I hope you have a great time on your trip. You are about to enter the most nerve wracking time of your life. The hardest part is the wait. Everytime the phone rang I felt sick. Forget that, I felt sick all the time. Driving to the grocery store, everywhere. But that is only a short period of life. Things are so much better after transplant. I know we are talking about different organs and heart transplant is more involved than the liver but life is soo much better after transplant because your little one will now have a healthy organ. Wait til you go to Disney after transplant. What a truely magical celebration that will be. Keep those thoughts in mind.

Join transplant support groups. I promise it will make you feel better. My last trip to Florida in June, we met up with a bunch of other transplant families. Just seeing all those kids running around enjoying life was amazing. They are my life line. Through them we are able to live a mostly normal life. If I hadn't found that group I probably would have kept Erin isolated. Now what kind of life would that be for a toddler. Instead she enjoys everything that a typical toddler would(except chucky cheese and McDonald's playgrounds, docs say she can but I am not comfortable with that).

I know you have a lot to worry about now but I just wanted to mention fundraising. (Nobody mentioned it to me pre transplant) There are organizations that help your family and friends raise funds for medical related costs.(You don't do a thing) Income bracket and insurance doesn't matter. It is a good thing because who knows what insurance will be like in 10 years. I'm sure you know meds are very expensive. The first 6 months after tx Erin's meds were $1500 a month.(Might have been because since she was an infant her meds were compounded) I could get you info on the organizations if you are interested.

God Bless your family & keep us posted,
Irene

 

[Rockclimber]

Hey Irene,

This is Dave, Cole's dad from CLASS. I was surfing around here trying to get some info about our family trip in Sept and saw you had posted. How about that? So, How is Erin? Are you guys going to WDW soon? We are going Sept 25-30. This will be the first trip with the kids Anna (4) and Cole (2). Can you believe Cole just celebrated his 1 year post transplant anniversary?!!! Time just flies by.

Anne,

I echo what Irene said about everything. Life is so much better for Cole this side of transplant, and I pray that is the case with your DD? Our support group is and has been incredible for advice, information and even just to vent when needed. Also we had a huge fundraising campaign that was beyond our wildest expectations, and it was definately needed. God certainly has provided for us.

Are you going to WDW on Make-A-Wish? Cole is too young to be a part of that now, but even after transplant the make a wish program is available to kids. We also want Cole to be old enough to decide what HE wants to do with his wish. I hear that the make a wish program for Disney is incredible. A lot of behind the scenes and special stuff for the kids. I also heard that there is some kid of special needs facility for the kids. Believe it or not we were at our TX facility in Cinncinati and I was talking to the chaplain about this very thing only 3 days ago. Amazing how useful the apparent useless info can be. Anyway, we will add your DD to our prayers. I don't know you or her but God knows who I will be referring to.

Have fun at the Happiest Place on Earth.

Dave

 

[amasonmom2four]

We went in September last year with our DD Chrissy, who was 3 at the time and is profoundly CP. She did okay, with some down time in the middle of the day. The heat from 1:00 pm till about 5:00 pm was too much for her. We are going again this September 10 - 17th. She is staying home with relatives, but we are taking our son (2, with Spina Bifida). Our trick for down time is either going to innoventions (epcot), and letting the older ones play while Chrissy and I rested, or to have a nice leisurely lunch at Sci-Fi Dine Inn (MGM), or just take in the shows at Magic Kingdom. Any place air conditioned! Also, the Baby Care centers are a great place to take them to rest - they have nice rocking chairs and will let you sit and rest as long as you need to.
Good luck with your daughter's transplant. I can only imagine how scary that must be for you all. I hope you can enjoy your wish trip. Chrissy had her wish trip in March this year and the weather was absolutely perfect for her. She had the most wonderful time and I have never seen her smile so much! It was lovely to watch her.
Angela

 

[Anne MN]

just found out that we are going Sept 19 - 25.

Now I just have to try to get one of the Princess Bfasts!

I will need luck for that !!