Lexi's pre-trip report for Dream Factory wish trip! June 18-24, 2009

[maroo]

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O.K. I am back. Yes, I got a camcorder for mothers day/anniversary. He was going to give it to me for my anniversary present (which is June 10) and we are leaving for our trip on June 18th he gave it to me now. You see he knows it will take me that long to figure out how to use it. LOL. I told everyone I am electronically challenged.

So, Lexi is doing wonderful this week. She is back to being my sweet little princess. She gets so mean to me when she is suffering from her BG. That is just one of the side effects and even though I know not to take it personal it is hard to sit and see her be so mean and hateful because I know she hates being like that also.

I am so glad she is feeling better!!

Now that she is doing good I am back to planning. I dug through some of our packed things (we have been trying to sell our house due to all of the medical bills). We are going to be moving up the street to a different house my friend is selling. Long story but the new house is bigger and will cost us less every month, like I said long story.

I was going through our stuff and was able to find the kids fans/water bottles from one of our previous trips to WDW. For those of you going I suggest you get them because it really saved my kids alot of stress from the heat by having them. It really did cool them off and this time it is a must with her diabetes. I think you can get them cheaper at department stores but they do offer them at MK for around 15 dollars.

I also found our pins from the previous visits. My kids love doing the pins but I have noticed that noone else has really talked about this on their trip reports. If you have traded pins at WDW you know they can be very addicting and fun. I actually got most of ours at DisneyMovieRewards.com with our points from movies and merchandise we have purchased. We did buy the kids a set each time we have been so they have 3 complete sets which they have traded out mostly.

So the two things I wanted to find and take back with us is checked off my list. Big relief, because we have so many boxes packed in storage, it is a miracle I found them so quickly.

Now I have to figure out what our schedule is going to be. I don't want to wait until the last minute but do you think it would be rude to call our DF rep and ask when our planes leave and when Lexi is scheduled to meet with Snow White? I also wonder if she even has it scheduled yet. We leave in 38 short days and I would love to have a layout of what we will be doing.

I don't know about Dream Foundation (is that right?), but most of the wish organizations wait a little while before they get tickets. This is because it is costly for them to move the flights around and sometimes the kids get sick, etc. Esp if you DD has been sick recently, they may wait a little bit. We were able to find out what airline they usually use, though, and look at the flights and get close to figuring what flight it would probably be.

Do you guys want me to do a planner for you? It is just a spreadsheet that may allow you to organize your plans some. Send me a PM if you would like to get one!

My son was able to pick one dinner because we thought that fair for him since our wish child is getting a dinner. He wants to eat at the Pirates dinner show ( I know we pay for this and it is extra but that will be o.k. as we will have some spending money to take with us.) Has anyone eaten there or known anyone who has? I looked at the pics and it looked a little bit scary so hopefully he will do o.k. I also showed him the pics but he is still wanting to go.

On Lauren's trip, her little brother also got to pick out a Dinner and he chose the Pirate Show, too!! We did not have a good experience there...but it had to do with Lauren being very sick and the staff just not understanding what we needed. I don't think they get very many wish kids in wheelchairs, because they did not have seating that worked well, etc. It did not matter, though, because Lauren ended up having to go back to the hotel (we did not stay at GKTW, they were full) and eventually ended up spending most of the night in the hospital.

BUT...William and his parents were able to stay for the show and they liked it! They said the food was good and they did get to participate in the show.

One thing...buy the upgrade. It costs about $10 or so more per person, but it allows you guys to be in the section where they pick the kids. It won't be like Disney where they will see the button and do something special...you sort of have to pay to get any special treatment there.

Also...make sure you have a map and a phone and the phone number of the pirate show...because it is in a sort of run down area of town. It is not a horrible area...but it is not on Disney property and we got lost and ended up in an area that I was not entirely comfortable with.

We would not go again at full price. But, if we had to do it all over again, even with our bad experience, we would take William again - especially at half off!

GKTW looks like it is going to be so much fun I am debating about not going to Epcot. What do you guys think. Our dd is 7 and our ds is 4. Would they get anything out of it? I am also wondering about the star wars ride my ds really wants to ride this but I think he will be too short so is there an area of different star wars things so he would at least get something out of the park? I know this is my dd's trip but we also want to make my ds feel special a little and not left out. He really does get left out alot because of dd's illness.

Totally depends on your time. If you have extra time on an MK day (which I doubt), you could hop over to Epcot. It is cool, honestly, to ride the monorail from MK to Epcot and get in the front. The monorail goes over all of Epcot and that is pretty cool...but make sure to wait for a front car so you can see it all.

They have Test Track and Soarin' - which they both will probably like. But make sure your 4 yr old is tall enough. I would skip World Showcase. Kids would also like the Nemo ride and Turtle Talk.

Star Wars stuff can be found at Disney Hollywood Studios! They have a Jedi Training Academy which would be awesome!

You can't do it all...so feel free to leave a park out!

Does anyone feel this way about their other children? Sometimes I feel so guilty because my dd really really need so much of my time.

I don't have a special needs child...but I do think that is a universal feeling.

Well that has been it for my planning today. We have a pool at our new house so after the school problems today I spent the rest of it opening our pool up. I can't believe summer is creeping up on us so fast. I still have so much to do.

I also need to find out what airline we are flying from so I can find out what meds we can take with us.

Which meds are you concerned about? All airlines allow insulin and needles for diabetics. In fact...I don't really know of any special meds...unless you need Oxygen for the plane ride...that you might have an issue with the airline?

 

[sammie girl]

Thank you for responding especially about the pirates show. We have to do out of pocket for or ds. That is o.k. because my husband is fortunate enough to get overtime to pay for the extra's. I am sorry to hear she was sick and didn't get to enjoy part of her trip. That is a fear of mine also.

My dd (wish child) is sick again and that is why I am up at 2:30 in the morning. She finally went back to sleep but now I can't. We went to the doctor today and found out she has mono. The doc said it shouldn't bother our trip because all symptoms will be gone by then. She has been having the sypmtoms for 2-3 weeks now and they usually last about 6 weeks. There has been an outbreak of that in her school but she really wasn't tired so I never thought to tell her doc. Guess what though! children don't typically get the tired symptom associated with mono. Now I know. Hopefully this will get out of her system soon and her BG's will go back to normal.

Thank you to everyone who has been praying and keeping us in your thoughts. I will write back everyone who has emailed and pm me. Just bear with me. It seems we have been taking a few steps forward and a few back at the same time. Thank God for what he has given us because it could be so much worse.

 

[kimmylaj]

prayers for your daughters . so glad she is feeling better
ps i sent you a pm. thanks

 

[maroo]

Thank you for responding especially about the pirates show. We have to do out of pocket for or ds. That is o.k. because my husband is fortunate enough to get overtime to pay for the extra's. I am sorry to hear she was sick and didn't get to enjoy part of her trip. That is a fear of mine also.

My dd (wish child) is sick again and that is why I am up at 2:30 in the morning. She finally went back to sleep but now I can't. We went to the doctor today and found out she has mono. The doc said it shouldn't bother our trip because all symptoms will be gone by then. She has been having the sypmtoms for 2-3 weeks now and they usually last about 6 weeks. There has been an outbreak of that in her school but she really wasn't tired so I never thought to tell her doc. Guess what though! children don't typically get the tired symptom associated with mono. Now I know. Hopefully this will get out of her system soon and her BG's will go back to normal.

Thank you to everyone who has been praying and keeping us in your thoughts. I will write back everyone who has emailed and pm me. Just bear with me. It seems we have been taking a few steps forward and a few back at the same time. Thank God for what he has given us because it could be so much worse.

Lauren would tell you, even today, that this trip was the very best EVER! Even the nurses in the hospital were so kind to her.

IF a wish child was to get very, very sick on their trip (in the hospital over days), it is possible to reschedule, even after you are there (assuming it is at the beginning). So don't worry too much!

And if she gets sick for a little while, she will still LOVE the resort and love what she gets to do!

I would tell her very little about what to expect and she will just have a ball and have no idea what she missed (if anything!).

One of the drawbacks of reading all of the Wish TR's is that you sort of get all of the magical moments in your head and eventually think they ALL will happen on your trip...each trip will have some magic...some moment that will make you tear up, it is that good. But all of the trips are different and all have different magic, for the most part!

Enjoy the pirate show! It will be a blast. And take some pics for us...since we were not able to get any (I had the cameras)...and for the future wish trippers!

(William just chimed in and said that he LOVED the pirate show!) (He is 9!)

 

[bellairisa]

I'm so sorry to hear that your DD got sick and now her BG's are all wacky again. I hope she starts feeling better and her BG's get back to normal again. We'll keep you guys in our prayers.

 

[sammie girl]

Not much planning this week . I had to go to my dd's school twice today. One time to check her ketone level and another because her site was causing her sever pain. We changed her site and she seems to be able to concentrate better. Only 4 more days of school and then it will be so much easier on me. None of these constant trips and phone calls back and forth.

I did make it to Kohl's today. I bought my dd 2 dresses that are really light weight. She loves dresses and has requested a new dress for everyday in Florida. I told her 2 new ones would do, LOL.

I also found a takini??? (I think that is what it is called). I was so worried about the pool and her pump. She will have to constantly check her BG while swimming because we have to take off her pump and she won't be getting the basal insulin, so she could go into high BG. Now with that being said while swimming she will also be exercising and that tends to bring her BG lower. So we will check often to make sure all is good. I will hook her pump back on her to do any corrections and give her a snack if she falls low.

My worry about her 1 piece was how would I hook her pump back on without always getting her undressed. I won't buy her a two piece because (if you can see in her pics) she isn't excatly little and don't want her to fell wierd.

SOOOO I love this new tankini???. It is a mix between a one and two piece. It seperates right at her pant line so I can have easy access to her site. How wonderful these clothes makers are. It did cost a little more than I was wanting to pay but well worth the money.

That is all I have to report as I have now been making trips to school and such......Can't wait to get some details about our trip and am hoping to be able to spend some time on the comp this weekend looking up times and such.

 

[sammie girl]

P.S. Her mono is still giving her headaches and stomachaces. Her throat has quit hurting and the school has agreed to let her sleep in and come in late if she wants. Today we made it on time but yesterday was about 15 minutes late.

 

[kdzbear]

I am so glad that she is feeling a little better. I also can not wait until school is out and I don't have to worry about which kid has school on which day. My daughter is also in a Catholic school, but my son is in a public school since it is the only school with a special needs program.

My daughter also has a tankini and they are wonderful! I am sure that Lexi will enjoy hers! It sounds like your trip planning is coming along well!

 

[BeckySob]

Tankinis are wonderful! My daughter wanted a bikini, but I said no way. So to compromise, i let her have a tankini. It's also nice because all of her scars don't really show.

I'm glad that your "baby girl" is doing better! Thankfully school is almost out. All them germs! ew.

Epcot does have the Character Spot. You will be able to see Mickey, Minnie, Goofy, Pluto, Donald Duck, and I think Daisy all in one place, and no waiting. They also have the wish lounges, that you will never have a chance to see. The scenery alone is very nice there. Just skip out on the World Showcase part. We did, although, i wish I was able to see that. They also have that one place with different flavors of coca-cola. That was pretty interesting. Watermelon coke? YUM.

Whichever parks you choose.....you will enjoy them either way.

 

[sammie girl]

It's been awhile since I have posted. We were at the hospital over the weekend but not for my dd (wish child). This time it was for my ds who was diagnosed with having asthma. I think for some reason I am really being pushed to the limit here. I understand things could be so much worse but I am the only one who will care for my dd and now I have breathing treatments for my son as well and I am feeling very tired and over pressured. So far the last 2 days my dd has been doing pretty well and my ds is doing good as long as we do treatments every 5 or 6 hours. He still gasps for air sometimes and it just scares me to death. I know asthma isn't that bad of an illness but like I said with everything else (diabetes, mono etc) it is a hardship. Now we will be packing more stuff for our trip.

Does anyone know if Florida makes asthma worse or better? Just wondering and hoping for the best.

I am getting ready to go buy some luggage because I loaned ours out and it was never returned to us. Kohl's is having 50-60 % off their luggage right now and I also have a 30% off coupon. I am hoping to find a set at a very reasonable price.

I will write more when I can. This is the last week of school for my dd and things are kinda crazy between that and the illnesses, hopefully everything will calm down so I can start on my trip a little more. It is getting way to close, only 1 month left.

 

[bellairisa]

Sales plus a coupon are two things that are great together. I hope you found a good luggage set, I just dragged ours out of the closet to start packing early, I tend to pack in spurts, lol.

I'm so sorry to hear about your ds, it sounds like you have lot on your plate, I can understand how overwhelmed you must feel.

 

[sammie girl]

We made it through a whole night without having to get up to do a breathing treatment for my ds. He was coughing and gasping after waking up so had to do one then.

My dd made it through two days of school without coming home sick with BG's. Although last night at bedtime her BG skyrocketed to 457

I will be sooooo glad when this mono is finally gone and we can get her back to normal. I got her BG's down and now they are in the high 100's which I can live with. I hope she does o.k. at school today. She only has 2 1/2 days left.

I did find a luggage set that was very reasonable. 7 piece set that was 229 on sale for 89 and with my coupon I paid around 65 dollars. It isn't the highest quality but will definitely do it's job. We gave up high quality stuff after having so many hospital, doctor and med bills

So hopefully I can get to some planning.

Oh!!!!!! and great news. My brother called out and wants to learn how to do dd's diabetic care. He is wanting to take her this Sat for awhile to give me a break. I can't believe it. Even her dad won't do the shots or insulin sets, blood etc. He did make a stipulation that it would only be a couple of hours and she would have to be having normal BG's before he takes her. Like I would send her if she wasn't

This week is turning out to be really really good and I hope my good luck continues. It must be all of the prayers flooding heaven.

 

[kdzbear]

Yeah for no breathing treatments! I have to do them every now and then with my one year old and they are no fun!

I am happy that Lexi is doing better. I am so excited for your trip!

The deal on luggage is great! The way airlines treat your luggage anymore, it is not worth it to get expensive pieces. Way to go with the sale!

I have another Dream Factory question for you. My son still does not have a volunteer since we live so far away from KC. I am assured that he will get one soon?!? I don't know how to put this and I hope this does not sound rude - Is Lexi's condition considered life threatening. I know it is if her blood sugar gets too high or too low and you cannot get it to correct. The reason I am asking is because Dream Factory says that we can't stay at GKTW since Tyler does not have a life threatening illness. I am not sure how that does not fit what he has, but I did not know if that gave you any explanations. I know that you had said at one point you weren't staying at GKTW and now you are. I have contacted my son's geneticist and they are trying to help me with the situation, but it could take some time. First you talk to the nurse and then you are referred to the genetics counselor and then if you have to see the geneticist again, it is a 6 month waiting list. I just wanted to see if you have any more information from this group than what I have so far. I think if he had a volunteer in charge of his Dream that it would help.

Anyway, I am so happy that Lexi is doing so well and that she is getting over her mono too!

 

[sammie girl]

Oh my goodness! I was under the impression that Dream Factory was for kids that were chronically ill, not terminally. We weren't going to be able to stay at GKTW because of booking dates not her illness. I am sure that as long as it is a DREAM trip you would be able to stay at GKTW. My husband ran into someone at the auto shop who told him he had a friend that just came back from GKTW (their child also had diabetes but don't live around here). My Alexis is not considered terminal and in my opinion any illness could become life threatening (ex. pneumonia, asthma etc), so that should have no bearing.

I am going to say this and I hope I don't sound rude or ungrateful. I am a little disappointed with our volunteer from the DF. UGGGGH I really said that! I just think there isn't much communication and when she came to our home she brought nothing for our other child. Our wish child got a calendar, camera, magnet and t-shirt (that has stains on it). She told our wish child the only thing she wanted in return for granting a wish was a hug and my child said "o.k yeah". When she left she just basically left. No hugs or anything. My child then asked about it. I just don't know if they are overly swamped right now or if this is just our volunteer.

Anyway like I said I don't want to sound ungrateful or nick picky but I basically have the same feeling you do. I would call GKTW or the dream factory's general number to get that answered. Staying at the resort was very important to my DD because I had let her see the web page and all. I would advise against this for your wisher until things are confirmed.

Good luck and please let me know when you hear something. Our trip is only a little over 3 weeks away and I still haven't heard anything about flights, dinner reservations etc. It is very hard for someone who doesn't like surprises and needs everything planned.

 

[kdzbear]

I am a huge planner too. I am just frustrated that first we don't have a volunteer and his wish/dream was approved over a month ago. I know that these are volunteers, but they meet once a week and every week no one picks my son. It is a little hard to hear. Then we encountered this next glitch. When we went to KC for the ball game they told us that they had just started granting wishes again after they had some budget issues. I am trying to be patient and understanding. They are providing a wonderful gift to my son, but I am just a little confused.

Here is the quote from the email: "No, Tyler does not qualify for Give Kids The World according to his diagnosis. Only life threatened kids are eligible for that resort."

I guess I will wait to get more information from the geneticist and go from there. Thank you for the support. I am glad you are documenting your experience with the Dream Factory so others can see how the process works. I am too, but my son's dream is further in the future!

 

[BeckySob]

I am a huge planner too. I am just frustrated that first we don't have a volunteer and his wish/dream was approved over a month ago. I know that these are volunteers, but they meet once a week and every week no one picks my son. It is a little hard to hear. Then we encountered this next glitch. When we went to KC for the ball game they told us that they had just started granting wishes again after they had some budget issues. I am trying to be patient and understanding. They are providing a wonderful gift to my son, but I am just a little confused.

Here is the quote from the email: "No, Tyler does not qualify for Give Kids The World according to his diagnosis. Only life threatened kids are eligible for that resort."

I guess I will wait to get more information from the geneticist and go from there. Thank you for the support. I am glad you are documenting your experience with the Dream Factory so others can see how the process works. I am too, but my son's dream is further in the future!

I can't believe that the people from DF said that. That means that every child that enters the gate of GKTW is terminally ill. NO. My daughter is not terminally ill. She lives with a chronic disease. We didn't ask to go to GKTW, they told us that that was where we will stay. It sounds to me like the people at DF really don't know what they're talking about. Their volunteers sound like heartless people. Their volunteers don't seem to understand the gravity of dealing with chronic illnesses. (or maybe it's the DF as a whole, I don't know)

 

[BeckySob]

Oh my goodness! I was under the impression that Dream Factory was for kids that were chronically ill, not terminally. We weren't going to be able to stay at GKTW because of booking dates not her illness. I am sure that as long as it is a DREAM trip you would be able to stay at GKTW. My husband ran into someone at the auto shop who told him he had a friend that just came back from GKTW (their child also had diabetes but don't live around here). My Alexis is not considered terminal and in my opinion any illness could become life threatening (ex. pneumonia, asthma etc), so that should have no bearing.

I am going to say this and I hope I don't sound rude or ungrateful. I am a little disappointed with our volunteer from the DF. UGGGGH I really said that! I just think there isn't much communication and when she came to our home she brought nothing for our other child. Our wish child got a calendar, camera, magnet and t-shirt (that has stains on it). She told our wish child the only thing she wanted in return for granting a wish was a hug and my child said "o.k yeah". When she left she just basically left. No hugs or anything. My child then asked about it. I just don't know if they are overly swamped right now or if this is just our volunteer.

Anyway like I said I don't want to sound ungrateful or nick picky but I basically have the same feeling you do. I would call GKTW or the dream factory's general number to get that answered. Staying at the resort was very important to my DD because I had let her see the web page and all. I would advise against this for your wisher until things are confirmed.

Good luck and please let me know when you hear something. Our trip is only a little over 3 weeks away and I still haven't heard anything about flights, dinner reservations etc. It is very hard for someone who doesn't like surprises and needs everything planned.

Girl......I would totally be feeling the same way. I can't believe that you haven't heard anything! Maybe you should call them. What if nothing has been done? It sounds to me like DF needs to be under new management.

 

[kimmylaj]

i am so glad your dd is feeling better, and that is awesome about your brother offering to help out. what a great guy to volunteer to learn about her care. enjoy a well deserved break

 

[sammie girl]

Hi I have some sorta bad news but not about our trip

My daughter goes to a private school and since she has gotten sick it has been a real struggle financially. I had to quit working and her med bills etc. I am sure everyone on here understands. Today we got a letter from her school (also was her last day of school) and they are raising our pay about 3,000 dollars yearly. We aren't going to take her out of the school because she is settled and everything she goes through we didn't want to do that to her also.

Just keep us in your prayers, I know God has answered so many for us already but I really believe he will find a way for this to work.

 

[kdzbear]

Hi I have some sorta bad news but not about our trip

My daughter goes to a private school and since she has gotten sick it has been a real struggle financially. I had to quit working and her med bills etc. I am sure everyone on here understands. Today we got a letter from her school (also was her last day of school) and they are raising our pay about 3,000 dollars yearly. We aren't going to take her out of the school because she is settled and everything she goes through we didn't want to do that to her also.

Just keep us in your prayers, I know God has answered so many for us already but I really believe he will find a way for this to work.

Have you talked to your priest. I know that we got a break when Tyler's medical bills were so high and he wasn't even in school, but his sister was. I bet they can work something out with you. I will send some more prayers your way. Ours is based on a percentage of income. Is yours a straight dollar amount. I am sure it will work out!