Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Good point. We also went in the summer -- when I was pregnant with Aubrie actually. It was miserable. Anything to ease that a bit would be helpful. Michele Disney Anne, , Joanne, everyone! Just an FYI.....going to Disney World in the summer is REALLY hot. Andy doesn't tolerate high temperatures very well, like other kids with CHARGE. Eight years ago our family " won " a trip to Disney World through the Sunshine Foundation....similar to the Make a Wish Foundation. One of the additional perks we received was the ability to enter the rides through the exits...which meant no standing in ANY lines. It was pure heaven. If someone does get a group organized in 2005, I would investigate the possibility of " no lines " . Disney is a great idea! Sally(Andy, 22) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 wow; could we make a charge day at disneyland california and do this no-line thingie? our kids are not always the most patient creatures in the world! .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2003 Report Share Posted October 28, 2003 Maybe when the conference brings us all to California someday... Michele W Re: Disney wow; could we make a charge day at disneyland california and do this no-line thingie? our kids are not always the most patient creatures in the world! . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Great news about Disney, . I'm sure Timmy will enjoy it. I can't wait till we go back. While we're on the topic, I read in the NJ Star-Ledger about a woman who specializes in planning vacations to disney. I emailed her with some of our post-Miami information and she seems interested. She'll call me on Monday morning to speak about our concerns and requests. If anyone has any special concerns at this time that you think I should mention, let me know. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 How wonderful!!!! We will be looking forward to hearing the stories from Tim's special day. ( I did laugh out loud at the " selling him to the gypsies " comment.... pam > ---------- > From: Pat and Halloran > Reply To: CHARGE > Sent: Tuesday, April 13, 2004 8:30 AM > To: CHARGE > Cc: lisa smith; kim sahlfeld; Jeff & Leia Heiman; alva dunn; Sterling ; Azarowicz > Subject: disney > > hi all, the will be a generic message--sorry about that...it's a time factor. We just go the news last night that tim is gettting his whirlwind trip to disney!!! He knows nothing about it!!! it's sponsered by the nj state police and other agencies in nj I bleieve--but it's called Sunshine Foundation Operation Dreamlift. (IT's fire and police in nj) but we know someone who is a trooper--he thought of tim--it's for opernamently hanicapped and terminally ill children. > > So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 hours there all expenses paid--go to the front of the lines--goet back on the bus to the plane and get to trenton around 10 pm then Jim will drive us home again. It will be a terribly long day--but for once this kid is getting a BIG treat for all he goes through!! (of course this am I could sell him to the gypsies) but, that's beside the point!!! > > of course the other two kids will have fits--he's going to disney--but we plan on doing special things with them tim cna't do--or doesn't enjoy--rock climbing for instance. > > Tim is on break this week--spent sunday night and monday with g and g Halloran dad picked him up after work--he would have stayed today, but we have to go get an ultrasound on his kidneys--he had blood in his urine about a month ago, no infection found, but antibiotics cleared it right up. so, we are doing the ultresound just to make sure everything is ok. thursday we " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a stress tear already--just got them 3 months ago. > > liam goes back to school thursday, keegan went back today, and tim is out until the 19th. So, I'm trying to keep him busy--not an easy task!! well, just wanted to share our BIG news---of course I won't tell him until I wake him up that morning--otherwise life will be not fun----question after question after question......you get the idea!!! > > have a good day--we are trying to stay dry rain--again!!! > > maria and the guys > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 I hope it will be a positive experience---and I'm glad you got a laugh---although I wasn't laughing when he refused to do anything this m. ---he never acts this way for them at school (which I am glad about), or anyone else, but the attitude and behavior at home is terrible. not all the time, but the majority of it now---is it being 8 or what? I swear his middle name must be cybill!! just fine one minute and the next his head is spinning around!! oh, the joys of motherhood!!! maria disney > > > > hi all, the will be a generic message--sorry about that...it's a time factor. We just go the news last night that tim is gettting his whirlwind trip to disney!!! He knows nothing about it!!! it's sponsered by the nj state police and other agencies in nj I bleieve--but it's called Sunshine Foundation Operation Dreamlift. (IT's fire and police in nj) but we know someone who is a trooper--he thought of tim--it's for opernamently hanicapped and terminally ill children. > > > > So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 hours there all expenses paid--go to the front of the lines--goet back on the bus to the plane and get to trenton around 10 pm then Jim will drive us home again. It will be a terribly long day--but for once this kid is getting a BIG treat for all he goes through!! (of course this am I could sell him to the gypsies) but, that's beside the point!!! > > > > of course the other two kids will have fits--he's going to disney--but we plan on doing special things with them tim cna't do--or doesn't enjoy--rock climbing for instance. > > > > Tim is on break this week--spent sunday night and monday with g and g Halloran dad picked him up after work--he would have stayed today, but we have to go get an ultrasound on his kidneys--he had blood in his urine about a month ago, no infection found, but antibiotics cleared it right up. so, we are doing the ultresound just to make sure everything is ok. thursday we " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a stress tear already--just got them 3 months ago. > > > > liam goes back to school thursday, keegan went back today, and tim is out until the 19th. So, I'm trying to keep him busy--not an easy task!! well, just wanted to share our BIG news---of course I won't tell him until I wake him up that morning--otherwise life will be not fun----question after question after question......you get the idea!!! > > > > have a good day--we are trying to stay dry rain--again!!! > > > > maria and the guys > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Awesome news!!!! It will be a long day, but what a wonderful memory! I just found out that Grandma got us a Disney trip to use after Aubrie's surgeries! It's a surprise for everyone. She told me because I told her about trying to figure out how to get in Disney when we go to Miami next summer. What a great surprise! Enjoy your fabulous trip! Michele W disney hi all, the will be a generic message--sorry about that...it's a time factor. We just go the news last night that tim is gettting his whirlwind trip to disney!!! He knows nothing about it!!! it's sponsered by the nj state police and other agencies in nj I bleieve--but it's called Sunshine Foundation Operation Dreamlift. (IT's fire and police in nj) but we know someone who is a trooper--he thought of tim--it's for opernamently hanicapped and terminally ill children. So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 hours there all expenses paid--go to the front of the lines--goet back on the bus to the plane and get to trenton around 10 pm then Jim will drive us home again. It will be a terribly long day--but for once this kid is getting a BIG treat for all he goes through!! (of course this am I could sell him to the gypsies) but, that's beside the point!!! of course the other two kids will have fits--he's going to disney--but we plan on doing special things with them tim cna't do--or doesn't enjoy--rock climbing for instance. Tim is on break this week--spent sunday night and monday with g and g Halloran dad picked him up after work--he would have stayed today, but we have to go get an ultrasound on his kidneys--he had blood in his urine about a month ago, no infection found, but antibiotics cleared it right up. so, we are doing the ultresound just to make sure everything is ok. thursday we " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a stress tear already--just got them 3 months ago. liam goes back to school thursday, keegan went back today, and tim is out until the 19th. So, I'm trying to keep him busy--not an easy task!! well, just wanted to share our BIG news---of course I won't tell him until I wake him up that morning--otherwise life will be not fun----question after question after question......you get the idea!!! have a good day--we are trying to stay dry rain--again!!! maria and the guys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 , this story sounds like I heard from a friend the other day. My friend Carol has a daughter who is named Abigail. Abigail has always been a challenge, to put it mildly (she is 6). Carol went to a PTA meeting the other night and the teacher was gushing about Abigail and said to Carol, " Is she ever bad? " Carol asked if she, the teacher, had the right kid! So...you are not alone for all the help THAT might be. pam > ---------- > From: Pat and Halloran > Reply To: CHARGE > Sent: Tuesday, April 13, 2004 9:09 AM > To: CHARGE > Subject: Re: disney > > I hope it will be a positive experience---and I'm glad you got a > laugh---although I wasn't laughing when he refused to do anything this > m. ---he never acts this way for them at school (which I am glad about), or > anyone else, but the attitude and behavior at home is terrible. not all the > time, but the majority of it now---is it being 8 or what? I swear his > middle name must be cybill!! just fine one minute and the next his head is > spinning around!! oh, the joys of motherhood!!! > > maria > disney > > > > > > hi all, the will be a generic message--sorry about that...it's a time > factor. We just go the news last night that tim is gettting his whirlwind > trip to disney!!! He knows nothing about it!!! it's sponsered by the nj > state police and other agencies in nj I bleieve--but it's called Sunshine > Foundation Operation Dreamlift. (IT's fire and police in nj) but we know > someone who is a trooper--he thought of tim--it's for opernamently > hanicapped and terminally ill children. > > > > > > So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive > to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim > and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 > hours there all expenses paid--go to the front of the lines--goet back on > the bus to the plane and get to trenton around 10 pm then Jim will drive us > home again. It will be a terribly long day--but for once this kid is > getting a BIG treat for all he goes through!! (of course this am I could > sell him to the gypsies) but, that's beside the point!!! > > > > > > of course the other two kids will have fits--he's going to disney--but > we plan on doing special things with them tim cna't do--or doesn't > enjoy--rock climbing for instance. > > > > > > Tim is on break this week--spent sunday night and monday with g and g > Halloran dad picked him up after work--he would have stayed today, but we > have to go get an ultrasound on his kidneys--he had blood in his urine about > a month ago, no infection found, but antibiotics cleared it right up. so, we > are doing the ultresound just to make sure everything is ok. thursday we > " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a > stress tear already--just got them 3 months ago. > > > > > > liam goes back to school thursday, keegan went back today, and tim is > out until the 19th. So, I'm trying to keep him busy--not an easy task!! > well, just wanted to share our BIG news---of course I won't tell him until I > wake him up that morning--otherwise life will be not fun----question after> > question after question......you get the idea!!! > > > > > > have a good day--we are trying to stay dry rain--again!!! > > > > > > maria and the guys > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 I have a question....since most of the rooms seem to be about the same size from low cost up to the higher priced ones, do they offer specials for connected rooms or do they have family suites? we have 5 in our family and it's starting to get tight---and arguing who uses the cot or sleeping bag. also--it would be great to have a place that offers " real " breakfasts so we can start off the day happy---I mean as part of the pkg. we don't need it, but would they have a big enough block of handicapped rooms around others so we are half way close to one another? I guess the next question would be who is interested in doing disney after miami? and how lucky are you michele?!?!? maria Re: disney > Great news about Disney, . I'm sure Timmy will enjoy it. I can't wait > till we go back. > > While we're on the topic, I read in the NJ Star-Ledger about a woman who > specializes in planning vacations to disney. I emailed her with some of our > post-Miami information and she seems interested. She'll call me on Monday morning to > speak about our concerns and requests. If anyone has any special concerns at > this time that you think I should mention, let me know. > > Joanne > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 - From the keyboard of Pat and Halloran: > I hope it will be a positive experience--- Sounds like quite a day for him!! I hope you make it thru. :-) >...and I'm glad you got a > laugh---although I wasn't laughing when he refused to do anything this > m. ---he never acts this way for them at school (which I am glad about), or > anyone else, but the attitude and behavior at home is terrible. not all the > time, but the majority of it now---is it being 8 or what? I swear his > middle name must be cybill!! just fine one minute and the next his head is > spinning around!! oh, the joys of motherhood!!! FWIW Mine have always put on their worst behavior for mom, so I don't think it's a CHARGE thing but just a normal kid thing. And for the being 8 and having attitude, does this as well sometimes but being grounded (for other things) generally diminishes the attitude for a while. To get him to do things, we often resort to tying it with removal of privileges and have resorted to threatening no TV or no gameboy if something doesn't get done immediately. That generally gets him moving more quickly. Hang in there, Debbie -- + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | | birth defects, not by eliminating them or making them happen only to bad | | people (He can't do that), but by summoning forth friends and neighbors | + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 thanks---me too!! it's excitng and scary at the same time. maria Re: disney > - > > From the keyboard of Pat and Halloran: > > I hope it will be a positive experience--- > > Sounds like quite a day for him!! I hope you make it thru. :-) > > >...and I'm glad you got a > > laugh---although I wasn't laughing when he refused to do anything this > > m. ---he never acts this way for them at school (which I am glad about), or > > anyone else, but the attitude and behavior at home is terrible. not all the > > time, but the majority of it now---is it being 8 or what? I swear his > > middle name must be cybill!! just fine one minute and the next his head is > > spinning around!! oh, the joys of motherhood!!! > > FWIW Mine have always put on their worst behavior for mom, so I don't > think it's a CHARGE thing but just a normal kid thing. And for the being > 8 and having attitude, does this as well sometimes but being grounded > (for other things) generally diminishes the attitude for a while. To get him > to do things, we often resort to tying it with removal of privileges and > have resorted to threatening no TV or no gameboy if something doesn't get > done immediately. That generally gets him moving more quickly. > > Hang in there, > Debbie > -- > + Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html + > | Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & | > | Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and | > | birth defects, not by eliminating them or making them happen only to bad | > | people (He can't do that), but by summoning forth friends and neighbors | > + to ease the burden and to fill the emptiness. " -- Harold S. Kushner + > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 I know I'm not alone, but when you're in the midst of it .....you feel like you're the only one in the world....if the week keeps going like today it's going to be a damn long week!!!! boy am I looking forward to my scrapbooking week-end all ALONE!!! I leave fri evening and don't get home until sunday afternoon. I LOVE my husband sooooooo much!!! maria disney > > > > > > > > hi all, the will be a generic message--sorry about that...it's a time > > factor. We just go the news last night that tim is gettting his whirlwind > > trip to disney!!! He knows nothing about it!!! it's sponsered by the nj > > state police and other agencies in nj I bleieve--but it's called Sunshine > > Foundation Operation Dreamlift. (IT's fire and police in nj) but we know > > someone who is a trooper--he thought of tim--it's for opernamently > > hanicapped and terminally ill children. > > > > > > > > So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive > > to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim > > and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 > > hours there all expenses paid--go to the front of the lines--goet back on > > the bus to the plane and get to trenton around 10 pm then Jim will drive us > > home again. It will be a terribly long day--but for once this kid is > > getting a BIG treat for all he goes through!! (of course this am I could > > sell him to the gypsies) but, that's beside the point!!! > > > > > > > > of course the other two kids will have fits--he's going to disney--but > > we plan on doing special things with them tim cna't do--or doesn't > > enjoy--rock climbing for instance. > > > > > > > > Tim is on break this week--spent sunday night and monday with g and g > > Halloran dad picked him up after work--he would have stayed today, but we > > have to go get an ultrasound on his kidneys--he had blood in his urine about > > a month ago, no infection found, but antibiotics cleared it right up. so, we > > are doing the ultresound just to make sure everything is ok. thursday we > > " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a > > stress tear already--just got them 3 months ago. > > > > > > > > liam goes back to school thursday, keegan went back today, and tim is > > out until the 19th. So, I'm trying to keep him busy--not an easy task!! > > well, just wanted to share our BIG news---of course I won't tell him until I > > wake him up that morning--otherwise life will be not fun----question after> > > question after question......you get the idea!!! > > > > > > > > have a good day--we are trying to stay dry rain--again!!! > > > > > > > > maria and the guys > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Hey thati s really good! im sure ull have a great time Belinda > hi all, the will be a generic message--sorry about that...it's a time factor. We just go the news last night that tim is gettting his whirlwind trip to disney!!! He knows nothing about it!!! it's sponsered by the nj state police and other agencies in nj I bleieve-- but it's called Sunshine Foundation Operation Dreamlift. (IT's fire and police in nj) but we know someone who is a trooper--he thought of tim--it's for opernamently hanicapped and terminally ill children. > > So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 hours there all expenses paid--go to the front of the lines--goet back on the bus to the plane and get to trenton around 10 pm then Jim will drive us home again. It will be a terribly long day--but for once this kid is getting a BIG treat for all he goes through!! (of course this am I could sell him to the gypsies) but, that's beside the point!!! > > of course the other two kids will have fits--he's going to disney-- but we plan on doing special things with them tim cna't do--or doesn't enjoy--rock climbing for instance. > > Tim is on break this week--spent sunday night and monday with g and g Halloran dad picked him up after work--he would have stayed today, but we have to go get an ultrasound on his kidneys--he had blood in his urine about a month ago, no infection found, but antibiotics cleared it right up. so, we are doing the ultresound just to make sure everything is ok. thursday we " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a stress tear already--just got them 3 months ago. > > liam goes back to school thursday, keegan went back today, and tim is out until the 19th. So, I'm trying to keep him busy--not an easy task!! well, just wanted to share our BIG news---of course I won't tell him until I wake him up that morning--otherwise life will be not fun----question after question after question......you get the idea!!! > > have a good day--we are trying to stay dry rain--again!!! > > maria and the guys > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 We were thinking that we'd combine Disney with Miami -- but in talking about it today we realized that we don't really have to combine the trips. Don't know where we're at on that at this point. The conference is so intense for me that I don't know if I'd have energy left for Disney after. Michele W Re: disney > Great news about Disney, . I'm sure Timmy will enjoy it. I can't wait > till we go back. > > While we're on the topic, I read in the NJ Star-Ledger about a woman who > specializes in planning vacations to disney. I emailed her with some of our > post-Miami information and she seems interested. She'll call me on Monday morning to > speak about our concerns and requests. If anyone has any special concerns at > this time that you think I should mention, let me know. > > Joanne > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Wow, How woderful for you and Tim. Lynn disney hi all, the will be a generic message--sorry about that...it's a time factor. We just go the news last night that tim is gettting his whirlwind trip to disney!!! He knows nothing about it!!! it's sponsered by the nj state police and other agencies in nj I bleieve--but it's called Sunshine Foundation Operation Dreamlift. (IT's fire and police in nj) but we know someone who is a trooper--he thought of tim--it's for opernamently hanicapped and terminally ill children. So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 hours there all expenses paid--go to the front of the lines--goet back on the bus to the plane and get to trenton around 10 pm then Jim will drive us home again. It will be a terribly long day--but for once this kid is getting a BIG treat for all he goes through!! (of course this am I could sell him to the gypsies) but, that's beside the point!!! of course the other two kids will have fits--he's going to disney--but we plan on doing special things with them tim cna't do--or doesn't enjoy--rock climbing for instance. Tim is on break this week--spent sunday night and monday with g and g Halloran dad picked him up after work--he would have stayed today, but we have to go get an ultrasound on his kidneys--he had blood in his urine about a month ago, no infection found, but antibiotics cleared it right up. so, we are doing the ultresound just to make sure everything is ok. thursday we " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a stress tear already--just got them 3 months ago. liam goes back to school thursday, keegan went back today, and tim is out until the 19th. So, I'm trying to keep him busy--not an easy task!! well, just wanted to share our BIG news---of course I won't tell him until I wake him up that morning--otherwise life will be not fun----question after question after question......you get the idea!!! have a good day--we are trying to stay dry rain--again!!! maria and the guys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 " he never acts this way for them at school (which I am glad about), or anyone else, but the attitude and behavior at home is terrible " The above describes our non- CHARGE son who will be 25 years old on 4 -22. From age 2 until he left for college I often wanted to " sell him to the gypsies " , you are not alone by any means. Hang in there Mom/ Wonder Woman Lynn disney > > > > hi all, the will be a generic message--sorry about that...it's a time factor. We just go the news last night that tim is gettting his whirlwind trip to disney!!! He knows nothing about it!!! it's sponsered by the nj state police and other agencies in nj I bleieve--but it's called Sunshine Foundation Operation Dreamlift. (IT's fire and police in nj) but we know someone who is a trooper--he thought of tim--it's for opernamently hanicapped and terminally ill children. > > > > So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 hours there all expenses paid--go to the front of the lines--goet back on the bus to the plane and get to trenton around 10 pm then Jim will drive us home again. It will be a terribly long day--but for once this kid is getting a BIG treat for all he goes through!! (of course this am I could sell him to the gypsies) but, that's beside the point!!! > > > > of course the other two kids will have fits--he's going to disney--but we plan on doing special things with them tim cna't do--or doesn't enjoy--rock climbing for instance. > > > > Tim is on break this week--spent sunday night and monday with g and g Halloran dad picked him up after work--he would have stayed today, but we have to go get an ultrasound on his kidneys--he had blood in his urine about a month ago, no infection found, but antibiotics cleared it right up. so, we are doing the ultresound just to make sure everything is ok. thursday we " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a stress tear already--just got them 3 months ago. > > > > liam goes back to school thursday, keegan went back today, and tim is out until the 19th. So, I'm trying to keep him busy--not an easy task!! well, just wanted to share our BIG news---of course I won't tell him until I wake him up that morning--otherwise life will be not fun----question after question after question......you get the idea!!! > > > > have a good day--we are trying to stay dry rain--again!!! > > > > maria and the guys > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Sounds like great fun. Lynn disney hi all, the will be a generic message--sorry about that...it's a time factor. We just go the news last night that tim is gettting his whirlwind trip to disney!!! He knows nothing about it!!! it's sponsered by the nj state police and other agencies in nj I bleieve--but it's called Sunshine Foundation Operation Dreamlift. (IT's fire and police in nj) but we know someone who is a trooper--he thought of tim--it's for opernamently hanicapped and terminally ill children. So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 hours there all expenses paid--go to the front of the lines--goet back on the bus to the plane and get to trenton around 10 pm then Jim will drive us home again. It will be a terribly long day--but for once this kid is getting a BIG treat for all he goes through!! (of course this am I could sell him to the gypsies) but, that's beside the point!!! of course the other two kids will have fits--he's going to disney--but we plan on doing special things with them tim cna't do--or doesn't enjoy--rock climbing for instance. Tim is on break this week--spent sunday night and monday with g and g Halloran dad picked him up after work--he would have stayed today, but we have to go get an ultrasound on his kidneys--he had blood in his urine about a month ago, no infection found, but antibiotics cleared it right up. so, we are doing the ultresound just to make sure everything is ok. thursday we " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a stress tear already--just got them 3 months ago. liam goes back to school thursday, keegan went back today, and tim is out until the 19th. So, I'm trying to keep him busy--not an easy task!! well, just wanted to share our BIG news---of course I won't tell him until I wake him up that morning--otherwise life will be not fun----question after question after question......you get the idea!!! have a good day--we are trying to stay dry rain--again!!! maria and the guys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 thanks Lynn!! disney > > > > > > hi all, the will be a generic message--sorry about that...it's a time > factor. We just go the news last night that tim is gettting his whirlwind > trip to disney!!! He knows nothing about it!!! it's sponsered by the nj > state police and other agencies in nj I bleieve--but it's called Sunshine > Foundation Operation Dreamlift. (IT's fire and police in nj) but we know > someone who is a trooper--he thought of tim--it's for opernamently > hanicapped and terminally ill children. > > > > > > So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive > to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim > and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 > hours there all expenses paid--go to the front of the lines--goet back on > the bus to the plane and get to trenton around 10 pm then Jim will drive us > home again. It will be a terribly long day--but for once this kid is > getting a BIG treat for all he goes through!! (of course this am I could > sell him to the gypsies) but, that's beside the point!!! > > > > > > of course the other two kids will have fits--he's going to disney--but > we plan on doing special things with them tim cna't do--or doesn't > enjoy--rock climbing for instance. > > > > > > Tim is on break this week--spent sunday night and monday with g and g > Halloran dad picked him up after work--he would have stayed today, but we > have to go get an ultrasound on his kidneys--he had blood in his urine about > a month ago, no infection found, but antibiotics cleared it right up. so, we > are doing the ultresound just to make sure everything is ok. thursday we > " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a > stress tear already--just got them 3 months ago. > > > > > > liam goes back to school thursday, keegan went back today, and tim is > out until the 19th. So, I'm trying to keep him busy--not an easy task!! > well, just wanted to share our BIG news---of course I won't tell him until I > wake him up that morning--otherwise life will be not fun----question after > question after question......you get the idea!!! > > > > > > have a good day--we are trying to stay dry rain--again!!! > > > > > > maria and the guys > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 thanks Lynn!! disney > > > > > > hi all, the will be a generic message--sorry about that...it's a time > factor. We just go the news last night that tim is gettting his whirlwind > trip to disney!!! He knows nothing about it!!! it's sponsered by the nj > state police and other agencies in nj I bleieve--but it's called Sunshine > Foundation Operation Dreamlift. (IT's fire and police in nj) but we know > someone who is a trooper--he thought of tim--it's for opernamently > hanicapped and terminally ill children. > > > > > > So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive > to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim > and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 > hours there all expenses paid--go to the front of the lines--goet back on > the bus to the plane and get to trenton around 10 pm then Jim will drive us > home again. It will be a terribly long day--but for once this kid is > getting a BIG treat for all he goes through!! (of course this am I could > sell him to the gypsies) but, that's beside the point!!! > > > > > > of course the other two kids will have fits--he's going to disney--but > we plan on doing special things with them tim cna't do--or doesn't > enjoy--rock climbing for instance. > > > > > > Tim is on break this week--spent sunday night and monday with g and g > Halloran dad picked him up after work--he would have stayed today, but we > have to go get an ultrasound on his kidneys--he had blood in his urine about > a month ago, no infection found, but antibiotics cleared it right up. so, we > are doing the ultresound just to make sure everything is ok. thursday we > " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a > stress tear already--just got them 3 months ago. > > > > > > liam goes back to school thursday, keegan went back today, and tim is > out until the 19th. So, I'm trying to keep him busy--not an easy task!! > well, just wanted to share our BIG news---of course I won't tell him until I > wake him up that morning--otherwise life will be not fun----question after > question after question......you get the idea!!! > > > > > > have a good day--we are trying to stay dry rain--again!!! > > > > > > maria and the guys > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 I hope so! maria disney > > > hi all, the will be a generic message--sorry about that...it's a time factor. We just go the news last night that tim is gettting his whirlwind trip to disney!!! He knows nothing about it!!! it's sponsered by the nj state police and other agencies in nj I bleieve--but it's called Sunshine Foundation Operation Dreamlift. (IT's fire and police in nj) but we know someone who is a trooper--he thought of tim--it's for opernamently hanicapped and terminally ill children. > > So, on tuesday, May 4 about 5 am probably Jim will pick us up and drive to trenton to the mercer co. airfield --we'll get on a chartered plane (Tim and I) and fly to orlando, we'll get on a bus and drive to disney--spend 6 hours there all expenses paid--go to the front of the lines--goet back on the bus to the plane and get to trenton around 10 pm then Jim will drive us home again. It will be a terribly long day--but for once this kid is getting a BIG treat for all he goes through!! (of course this am I could sell him to the gypsies) but, that's beside the point!!! > > of course the other two kids will have fits--he's going to disney--but we plan on doing special things with them tim cna't do--or doesn't enjoy--rock climbing for instance. > > Tim is on break this week--spent sunday night and monday with g and g Halloran dad picked him up after work--he would have stayed today, but we have to go get an ultrasound on his kidneys--he had blood in his urine about a month ago, no infection found, but antibiotics cleared it right up. so, we are doing the ultresound just to make sure everything is ok. thursday we " get " to go get his orhtotics fixed again--$2000.00 a piece and one has a stress tear already--just got them 3 months ago. > > liam goes back to school thursday, keegan went back today, and tim is out until the 19th. So, I'm trying to keep him busy--not an easy task!! well, just wanted to share our BIG news---of course I won't tell him until I wake him up that morning--otherwise life will be not fun----question after question after question......you get the idea!!! > > have a good day--we are trying to stay dry rain--again!!! > > maria and the guys > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Michele-I think I'm with ya on being too tired after the conf. to do Disney. Nate doesn't much care anyway. We'll spend time before or after in other parts of the state visiting family and friends. Plus my high school reunion will be that weekend or the one before (can't wait to see how I juggle that!). For anyone who IS going to Disney: They have lots of services for handicapped. I believe they have a whole program you can do that lets you have a " special " trip (no lines,extra perks). Anybody out there have info on that? Barbara-mom,10,Rosie14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 , I would love to find out if there would be any specials, we just came back from disney, we only did the Magic Kingdom because we could only stay for a few days. I am not sure if we will go to disney before or after the conference though, because it might interfere with 's camp. We plan to stay for a full week this time, there is just too much to do. We had a blast. We got an assistance card for people with disabilities which allowed us to bypass most of the lines, and get preferred seating for all the shows. We did the whole park practically twice in one day. It was great. Debbie Re: disney I have a question....since most of the rooms seem to be about the same size from low cost up to the higher priced ones, do they offer specials for connected rooms or do they have family suites? we have 5 in our family and it's starting to get tight---and arguing who uses the cot or sleeping bag. also--it would be great to have a place that offers " real " breakfasts so we can start off the day happy---I mean as part of the pkg. we don't need it, but would they have a big enough block of handicapped rooms around others so we are half way close to one another? I guess the next question would be who is interested in doing disney after miami? and how lucky are you michele?!?!? maria Re: disney > Great news about Disney, . I'm sure Timmy will enjoy it. I can't wait > till we go back. > > While we're on the topic, I read in the NJ Star-Ledger about a woman who > specializes in planning vacations to disney. I emailed her with some of our > post-Miami information and she seems interested. She'll call me on Monday morning to > speak about our concerns and requests. If anyone has any special concerns at > this time that you think I should mention, let me know. > > Joanne > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 , I would love to find out if there would be any specials, we just came back from disney, we only did the Magic Kingdom because we could only stay for a few days. I am not sure if we will go to disney before or after the conference though, because it might interfere with 's camp. We plan to stay for a full week this time, there is just too much to do. We had a blast. We got an assistance card for people with disabilities which allowed us to bypass most of the lines, and get preferred seating for all the shows. We did the whole park practically twice in one day. It was great. Debbie Re: disney I have a question....since most of the rooms seem to be about the same size from low cost up to the higher priced ones, do they offer specials for connected rooms or do they have family suites? we have 5 in our family and it's starting to get tight---and arguing who uses the cot or sleeping bag. also--it would be great to have a place that offers " real " breakfasts so we can start off the day happy---I mean as part of the pkg. we don't need it, but would they have a big enough block of handicapped rooms around others so we are half way close to one another? I guess the next question would be who is interested in doing disney after miami? and how lucky are you michele?!?!? maria Re: disney > Great news about Disney, . I'm sure Timmy will enjoy it. I can't wait > till we go back. > > While we're on the topic, I read in the NJ Star-Ledger about a woman who > specializes in planning vacations to disney. I emailed her with some of our > post-Miami information and she seems interested. She'll call me on Monday morning to > speak about our concerns and requests. If anyone has any special concerns at > this time that you think I should mention, let me know. > > Joanne > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Do you have to arrange in advance for an assistance card? Michele w Aubrie's mom Re: disney > Great news about Disney, . I'm sure Timmy will enjoy it. I can't wait > till we go back. > > While we're on the topic, I read in the NJ Star-Ledger about a woman who > specializes in planning vacations to disney. I emailed her with some of our > post-Miami information and she seems interested. She'll call me on Monday morning to > speak about our concerns and requests. If anyone has any special concerns at > this time that you think I should mention, let me know. > > Joanne > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 No, what you do is get a letter from your pediatrician or other doctor stating that he/she has the following disabilities and needs special access entrances, preferred front seating due to vision/hearing etc. My last letter they didn't even read. I brought with me to the customer service area and they gave me the card that says what types of special assistance he needs. This is the 2nd time I have done this. They will tell you it isn't to bypass lines, but they have to say that because others will not think it is not fair. When you go through the special access entrance, you will essentially bypass the line. If the ride doesn't have a handicap entrance, then you will have to wait. We found that on all the little rides, but all the big rides except " It's a small world " have it. You would want to do " small world " first thing to avoid the line. Rides we should have waited over an hour for, we got on right away, and sometimes they will ask you if you want to go around again. Re: disney Do you have to arrange in advance for an assistance card? Michele w Aubrie's mom Re: disney > Great news about Disney, . I'm sure Timmy will enjoy it. I can't wait > till we go back. > > While we're on the topic, I read in the NJ Star-Ledger about a woman who > specializes in planning vacations to disney. I emailed her with some of our > post-Miami information and she seems interested. She'll call me on Monday morning to > speak about our concerns and requests. If anyone has any special concerns at > this time that you think I should mention, let me know. > > Joanne > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
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