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Old 05-14-2009, 10:43 PM   #31
ndloewen
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Oh, I'm so sorry to hear that. I never knew that there were certain conditions for GKTW. I mean, I thought if a wish foundation approved you, then you could chose to stay there. That doesn't make any sense, especially when your son's condition is unknown...how can they say it's not life threatening??

Has your son's chromosome deletion caused health problems that have been life threatening? My son's chromosome deletion (also very unknown) has caused multiple health issues that have almost taken his life many times over, which is what qualifed him for a wish. If Tyler has had such complications, perhaps you could point that out to your wish foundation as life threatening, or have your doctor write a letter to that effect??

So sorry you have to deal with this. It's the last thing you need.
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Old 05-14-2009, 10:51 PM   #32
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I want to apologize for my outburst earlier. I know that we are getting a Dream and I should not complain. I guess I was just disappointed that Tyler could not experience Give Kids the World. I have contacted his geneticist in KC and we may have to take a trip up there to see the geneticist. We refer to him as the “Doom and Gloom” Doctor, but right now it appears that doom and gloom is what these agencies need. I am hoping he can help. If not, we will enjoy the gift we have been given. We are blessed that are son will live past his Wish trip whereas I know that many children will not have this opportunity. We are blessed to have him in our lives.

I have also been having problems with my son’s case manager. She did not show up for his last IEP and it was DH and I and then all of the staff members that deal with Tyler at his school. It felt as if no one was on our side. I know that they do the best they can with the resources that they have, but there are 24 kids in a Pre-K class that is a mix of 3 and 4 year olds, special needs and normal kids. I wanted him to go to a more specialized pre-school, but they lost their funding through the state in the fall so he lost his chance to go there. Then his IEP was filled out wrong as his speech therapist had never written one before. His physical therapy needs were put on the wrong page so I did not know that he was not receiving physical therapy until December and his IEP did not get corrected until February. Needless to say his torticollis worsened. His club feet have also gotten worse. He was supposed to be done with his AFOs when he turned three and he is almost four and there is no end in sight. It is really apparent when he tries to run. He trips over his feet a lot. This setback occurred after I spent two years of taking him to hydrotherapy and physical therapy bi-weekly and almost had the problems fixed. He has been receiving speech therapy the whole year, but he does not say many more words and he still cannot feel food in his mouth and chokes often when he eats.

Then today my friend told me that her autistic son just started to receive compensation for her son, who just turned four. He receives free pull-ups, diapers and wipes. I emailed Tyler’s case manager to ask how I would get Tyler to qualify for this and she tells me that the form had to be turned in by September 22, 2008. She is just telling me now! She told me that I could apply this fall for 2010. If Tyler is still wearing diapers in 2010, I will pull my hair out. I am going to work really hard at potty training him this summer. I have been told that the delay is due to low muscle tone.

However, I just received some happy news for our trip for this September. I have diligently been watching airfare. The lowest one way it had gone has been $99 before taxes. It was $89 two days ago when I called AAA, but I procrastinated and did not book as I knew it was a 3 day sale. I have checked it several times today and then all of a sudden tonight it was $79 before taxes. This is only the return part. So, now we have a return flight from Orlando and I just need to find a sale on a flight to get there. Finally, some good news to share!
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 05-15-2009, 09:03 AM   #33
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Originally Posted by kdzbear View Post
I want to apologize for my outburst earlier. I know that we are getting a Dream and I should not complain. I guess I was just disappointed that Tyler could not experience Give Kids the World. I have contacted his geneticist in KC and we may have to take a trip up there to see the geneticist.

Please don't feel like you have to apologize! I would be upset, too.

We refer to him as the “Doom and Gloom” Doctor, but right now it appears that doom and gloom is what these agencies need. I am hoping he can help. If not, we will enjoy the gift we have been given. We are blessed that are son will live past his Wish trip whereas I know that many children will not have this opportunity. We are blessed to have him in our lives.

I am glad you are going back to the geneticist and hopefully they can shed some light on all of the issues!

I have also been having problems with my son’s case manager. She did not show up for his last IEP and it was DH and I and then all of the staff members that deal with Tyler at his school. It felt as if no one was on our side. I know that they do the best they can with the resources that they have, but there are 24 kids in a Pre-K class that is a mix of 3 and 4 year olds, special needs and normal kids. I wanted him to go to a more specialized pre-school, but they lost their funding through the state in the fall so he lost his chance to go there. Then his IEP was filled out wrong as his speech therapist had never written one before. His physical therapy needs were put on the wrong page so I did not know that he was not receiving physical therapy until December and his IEP did not get corrected until February. Needless to say his torticollis worsened. His club feet have also gotten worse. He was supposed to be done with his AFOs when he turned three and he is almost four and there is no end in sight. It is really apparent when he tries to run. He trips over his feet a lot. This setback occurred after I spent two years of taking him to hydrotherapy and physical therapy bi-weekly and almost had the problems fixed. He has been receiving speech therapy the whole year, but he does not say many more words and he still cannot feel food in his mouth and chokes often when he eats.

Oh no!! IEPs are such a pain! Gosh, I hope all of that gets fixed. More hugs your way!

Then today my friend told me that her autistic son just started to receive compensation for her son, who just turned four. He receives free pull-ups, diapers and wipes. I emailed Tyler’s case manager to ask how I would get Tyler to qualify for this and she tells me that the form had to be turned in by September 22, 2008. She is just telling me now! She told me that I could apply this fall for 2010. If Tyler is still wearing diapers in 2010, I will pull my hair out. I am going to work really hard at potty training him this summer. I have been told that the delay is due to low muscle tone.


However, I just received some happy news for our trip for this September. I have diligently been watching airfare. The lowest one way it had gone has been $99 before taxes. It was $89 two days ago when I called AAA, but I procrastinated and did not book as I knew it was a 3 day sale. I have checked it several times today and then all of a sudden tonight it was $79 before taxes. This is only the return part. So, now we have a return flight from Orlando and I just need to find a sale on a flight to get there. Finally, some good news to share!

That is GREAT airfare!! Fabulous news!

I have had no such luck! I guess that is what I get for flying on Labor Day weekend and a return flight on a Sunday.


I can't wait to meet you guys!!
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Old 05-15-2009, 09:48 AM   #34
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Maroo,

We can't wait to meet you either. We are flying home on a Sunday. I just kept checking the flights every couple of hours. I thought yesterday was Wednesday. I guess I am off a day this week. In the morning the flights were still $89 coming back, which is the cheapest they have been in months. Then when I went to show my husband last night they dropped to $79. You might want to check again. Lots of the airlines reduced their prices yesterday for some reason. I have found a bunch of outgoing flights for $79 now too. We just need to decide if we want to fly on one airline out and another back. If you want to PM me your flight details I would be glad to search for you. I love planning travel.

I have contacted Tyler's geneticist and am waiting for a call back. I also contacted Prisca at Unique and she told me that there was just a new study published in the European Medical Journal about Tyler's condition so I may have more information soon. I did send her an update too so she can update the leaflet on Tyler's condition.


Ndloewen – Thank you for the kind words and support!

Thank you for everyone's support!
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 05-15-2009, 04:33 PM   #35
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More good news! Tyler had an eye doctor’s visit today. Both of his astigmatisms have remained the same and have not worsened. His vision is still the same as before. The doctor explained as he grows and his eyes grow it will eventually get worse. I asked what his vision was such as 20/40 and the doctor explained that you can’t measure vision that way unless the person can communicate with the doctor such as reading the letter chart. He used other tests to determine his current vision. Then we went and picked out a new pair of glasses. They are the same as his old ones, but they have a new one year warranty, which is invaluable with Tyler and how he treats his glasses. We are also down to once a year appointments instead of every six months.

Then the genetics clinic at Children’s Mercy called me. The genetics counselor is getting some more information about new updates on Tyler’s condition and they will call me back on Monday afternoon. Maybe, we will get some useful information!
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 05-21-2009, 10:00 AM   #36
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More updates!

Several updates:

1) My husband wanted to see what I was spending all of my time doing on the internet and he saw in my inbox all of the disboards emails. I showed him Noah’s wish trip report. He thinks Noah is so cute! Then he asked if we had one of these crazy things. I said yes and he wanted to read it. First, he said that I wrote a book! Then he pointed out several other things. First, when Tyler came out of NCIU after 2 days, he spent 2 more days in special care before going home for one day and being readmitted for 3 more. I guess I shortened the time he was in the hospital. Second, he did not like that I listed his occupation, but I am leaving anyway.

2) We received the date that we will arrive in Orlando and it is November 21st. The Dream Factory has reserved a condo for us. I do not know anything else right now.

3) I probably should not have done what I did next, but I did it anyway. It has been a frustrating week and so I sent a very polite letter to GKTW and asked why Tyler did not qualify to stay there. I included some of the background of what he went through. I figure at this point it cannot hurt – at least I hope it won’t hurt anything. I hope that I do not upset the apple cart at the Dream Factory.

4) I talked to one of the geneticists staff members on Monday. They took down some more information on Tyler. They were not aware of the new European Journal of Medical Genetics study and they were going to try to look it up. It contains new information about Tyler’s missing chromosome parts. They also said that there was a new FISH test out to provide more details about what exactly Tyler is missing and how it will affect him, but I am not sure our insurance will cover it. I explained to her that we had had four tests done when he was born and they totaled over $4,000. They did one test through the amino, tested me, tested DH and then the doctor at the hospital without our authorization tested him again once he was born. It took my husband almost a year of fighting with the insurance company to finally get them paid and they were refusing to do so. So, I am not sure if we will have this test done. Now I am just waiting on the counselors to research more, talk to the geneticist and call me back. They also know about my problems I am having with his wish.

I am very grateful that he had been granted a wish. I hope it does not sound otherwise. Thank you again for everyone’s support.
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 05-21-2009, 10:47 AM   #37
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Just throwing my 2 cents in but I dont think you sound ungrateful at all.

Everyone is allowed to complain a little & considering everything you have been through youre allowed to complain a lot! ha ha


Really though, youre not complaining & what are friends for if you can't vent a bit.

It's good you wrote that letter... like you said, whats the worst that could happen?

Every summer here our one radio station throws a huge concert & the only way to get tickets was to win them. My friend & I have been trying to get some so we can go. The other day they had a thing they advertised on the radio that if you got down to a local car dealership from 12-1 you could win. My friend was there from 111 about 1:15 & didnt win. The guy who was running it was being a jerk & it wasnt like they advertised. You had to enter in a basket to win & winners were drawn every 5 mins. People were walking up & dropping their ticket in & winning since the bin with tickets wasnt being shuffled. She said there was like 20 people there before 12 & NONE of them won. Needless to say she was upset.

She called me & I told her to write an email to the station (my story has a point after all, ha ha). I told her to very nicely explain what happened. She wasnt so much upset over the fact she didnt win but the unfair way it was handled & advertised.

She got an email back about an hour later saying that not everyone could win but he understood why she was upset & told her he was sorry & gave her a 4 pack of tickets.

Moral of the story..... writing a letter cant hurt

I hope things work out some more for you & I'm sending some good karma your way
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Old 05-21-2009, 10:58 AM   #38
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Quote:
Originally Posted by kdzbear View Post
Several updates:

1) My husband wanted to see what I was spending all of my time doing on the internet and he saw in my inbox all of the disboards emails. I showed him Noah’s wish trip report. He thinks Noah is so cute! Then he asked if we had one of these crazy things. I said yes and he wanted to read it. First, he said that I wrote a book! Then he pointed out several other things. First, when Tyler came out of NCIU after 2 days, he spent 2 more days in special care before going home for one day and being readmitted for 3 more. I guess I shortened the time he was in the hospital. Second, he did not like that I listed his occupation, but I am leaving anyway.

2) We received the date that we will arrive in Orlando and it is November 21st. The Dream Factory has reserved a condo for us. I do not know anything else right now.

3) I probably should not have done what I did next, but I did it anyway. It has been a frustrating week and so I sent a very polite letter to GKTW and asked why Tyler did not qualify to stay there. I included some of the background of what he went through. I figure at this point it cannot hurt – at least I hope it won’t hurt anything. I hope that I do not upset the apple cart at the Dream Factory.

4) I talked to one of the geneticists staff members on Monday. They took down some more information on Tyler. They were not aware of the new European Journal of Medical Genetics study and they were going to try to look it up. It contains new information about Tyler’s missing chromosome parts. They also said that there was a new FISH test out to provide more details about what exactly Tyler is missing and how it will affect him, but I am not sure our insurance will cover it. I explained to her that we had had four tests done when he was born and they totaled over $4,000. They did one test through the amino, tested me, tested DH and then the doctor at the hospital without our authorization tested him again once he was born. It took my husband almost a year of fighting with the insurance company to finally get them paid and they were refusing to do so. So, I am not sure if we will have this test done. Now I am just waiting on the counselors to research more, talk to the geneticist and call me back. They also know about my problems I am having with his wish.

I am very grateful that he had been granted a wish. I hope it does not sound otherwise. Thank you again for everyone’s support.
Awwww...thanks! Glad your hubby enjoyed our trip report too. I really need to get working on it again, while the details are still somewhat fresh.

I'm glad you wrote the letter. I don't think there is anything wrong with that. At least you will get a definate answer from GKTW and can go from there.
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Old 05-21-2009, 11:05 AM   #39
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I am glad you wrote a letter!

And hopefully, between that and the geneticist appt, you guys can get some more information and hopefully it will help get the wish trip stuff straightened out!

And I don't think you are being ungrateful at all!!!
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Old 05-21-2009, 01:33 PM   #40
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I agree. I think it is good to give them a phone call or a letter about not staying there. I already told you about our experience with this chapter. I don't think you are being ungrateful. I also felt bad for a bit after complaining about our experience but then realized that this is OUR SICK child's dream and it should be as perfect as we parent's can make it. Like many have said it is a once in a lifetime experience. Even though some cases are worse than others it doesn't mean our kid's aren't suffering, feeling left out and different.

You are doing a good job standing up for your son and getting questions answered.

I am glad you have your dates and hopefully will be better informed than we are.
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Old 06-01-2009, 11:50 AM   #41
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Well, the good news is we are going to Orlando on November 21st and it looks like we will be there for Thanksgiving. The bad news is that we will not be able to stay at Give Kids the World. Unfortunately, GKTW simply took the letter I sent them and gave it back to the Dream Factory. There must be a reason for this that I do not understand yet. I am sure that Tyler will not know the difference and we will make sure that he enjoys his Wish. Everything happens for a reason, right?

I still have not heard back from the geneticist and I think I will call them back on Wednesday if I do not hear anything soon.

Right now I am trying to finish writing a curriculum for VBS, which is in 2 weeks. We had two old "scripts", but they both are missing lots of important pieces. I think I am down to games and prayer time! Wahoo! Then I am back to planning our fall Disney trip.
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 06-01-2009, 12:53 PM   #42
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I am sad to hear about GKTW but I think you will have a magical time anyway. Are you going to the fishing day this Sat.? I heard they are alot of fun and am soooo sad we will miss it. My kids have their gymnastics recital so that takes priority. You will have to let me know if you go or not. My dd still wants to meet your son and I can't seem to get through to her that you don't just live over the bridge from us She doesn't understand that Kansas is big and not everyone lives just across the water.

Oh planning VBS sounds like so much fun. Even though my hubbie is Catholic and my kids go to Catholic school(up until today that is) I have remained a presbytarian. My kids go to mass and they also go to my church which has more activities and things kids can relate to. I thought it would confuse them but realize they are getting the best of both worlds through their experience with religion and will make their own decision when they are old enough.

Can't wait to read more about your planning.
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Old 06-01-2009, 01:29 PM   #43
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Do you know where you will get to stay yet?

I am disappointed that you can not stay at GKTW. But...we did not stay there, either...we got to visit that very first day, and definitely thought it was a magical place...but the trip was still the best ever!

Do you know what type of tickets you guys get? Or how many days you are able to stay? How cool that you will be there over Thanksgiving!
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Old 06-01-2009, 03:05 PM   #44
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We don't have any more information yet. We just know that it is a condo in Orlando and we will arrive on Nov. 21st. I am a little sad that there are no Mickey's Christmas parties that week. I am hoping that when we go to the Dream Factory's Fishing for Dream Event this weekend we will meet our volunteer. The last I heard no one had selected Tyler yet. The head of the KC chapter called and made the reservations for our date so my husband could request the time off. I am not sure if we will ever get any more detailed information. I am just going to go with the flow. I will make our September trip super magical, just in case!
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Tyler's Wish Trip (Nov. 20-25, 2009): http://www.disboards.com/showthread.php?t=2154359 Sept. 12-20, 2009 Trip report: http://www.disboards.com/showthread.php?t=2292505
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Old 06-03-2009, 05:25 AM   #45
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Quote:
Originally Posted by kdzbear View Post
We don't have any more information yet. We just know that it is a condo in Orlando and we will arrive on Nov. 21st. I am a little sad that there are no Mickey's Christmas parties that week. I am hoping that when we go to the Dream Factory's Fishing for Dream Event this weekend we will meet our volunteer. The last I heard no one had selected Tyler yet. The head of the KC chapter called and made the reservations for our date so my husband could request the time off. I am not sure if we will ever get any more detailed information. I am just going to go with the flow. I will make our September trip super magical, just in case!
I have been told that it depends how the doctor fills out the paperwork. Maybe he didn't put that your ds condition is at times life threatening. Thought maybe you want to check into that.
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