Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 On 6/13/2005 at 11:50:39 P.M. Central Standard Time you wrote: I missed it somewhere, what surgery are you having?? So sorry to have to ask... Hope it goes well. Carolyn .. Thanks Carolyn, I am having some rectocele and cystocele repair.....put off far too long. I appreciate all the well wishes. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 Anyone hear anything recently from Diane? I was just checking the carepage and there has not been an update since the 8th. Just wondering how she is doing. Also, some messages mention a benefit for Maggie. Does anyone know anything about that? I would love to help somehow if I can. Thanks, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 , I sent a note to Diane asking about the benefit but have not received a response. But then that was a couple of weeks ago I think. I have not heard any more about the benefit. She did mention on one of her updates that Maggie will be singing on the radio for the Children's Miracle Network soon. If any one hears I hope they will post info here. Veri & Jaye 15 poly Maggie? Anyone hear anything recently from Diane? I was just checking the carepage and there has not been an update since the 8th. Just wondering how she is doing. Also, some messages mention a benefit for Maggie. Does anyone know anything about that? I would love to help somehow if I can. Thanks, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 ok so after I posted this I checked Maggie's care page and Diane posted this afternoon. Maggie sang on the radio this morning to help raise funds for the CMN. I wish I could of heard it. But then knowing all she has been going through I would have disovled to tears to hear her sing. Veri & Jaye 15 poly Maggie? Anyone hear anything recently from Diane? I was just checking the carepage and there has not been an update since the 8th. Just wondering how she is doing. Also, some messages mention a benefit for Maggie. Does anyone know anything about that? I would love to help somehow if I can. Thanks, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 I found this information online at a website www.2dorks.com<http://www.2dorks.com> I am not sure what they would like for donations for the auction or if there is a way to get in on the raffle. Maybe someone would know? Michele ( 22, spondy) Unbreakable Spirit Benefit for Maggie Wiederholt When: Saturday, December 5, 2009 from 3pm-11pm Where: Cedar Lanes Where: 605 E 7th St., Tipton, IA The celebration for Maggie's " Unbreakable Spirit " will include a steak dinner, a silent auction, " Bowling For Maggie " , a 50/50 raffle and a DJ dance wrapping up the night to celebrate all the wonderful memories Maggie has had in these 12 years she has blessed all of our hearts. Maggie Wiederholt is a 12 year old from Walcott, IA that was diagnosed with Osteogenesis Imperfecta also known as " Brittle Bones Disease " in 1997 as an infant. Maggie has spent countless months at a time in the hospital, all throughout her life, with numerous fractures and breaks all over her body. The majority of the last 3 years have been spent lying in hospitals beds while a baffling and serious medical condition known as Bechets Disease wreaks havoc on her frail body. Research done in the U. S. has found Maggie's case to be the worst one ever studied. This disease has taken over her entire body, and as early as September of this year, her condition worsened so much that she was admitted to the Pediatric Intensive Care Unit at the University of Iowa Hospital so that she could be monitored around the clock. Since being diagnosed with Bechets Disease, her doctors have found the only known medication to help with this disease that would not attack other organs in her body, but it is only legal in Turkey. Her doctors are working with other doctors in Turkey to find a way to have this drug approved and sent to the United States. This is her only chance for survival. Please send donations to Event Coordinator: Neilson 1576 Highway 61 Delmar, IA 52037 Or Donations Advisor: Schlotfeldt 4322 W. Lombard Davenport, IA 52804 Subject: Re: Maggie? ________________________________ From: [mailto: ] On Behalf Of veristroud@... Sent: Friday, November 13, 2009 9:17 PM , I sent a note to Diane asking about the benefit but have not received a response. But then that was a couple of weeks ago I think. I have not heard any more about the benefit. She did mention on one of her updates that Maggie will be singing on the radio for the Children's Miracle Network soon. If any one hears I hope they will post info here. Veri & Jaye 15 poly Maggie? Anyone hear anything recently from Diane? I was just checking the carepage and there has not been an update since the 8th. Just wondering how she is doing. Also, some messages mention a benefit for Maggie. Does anyone know anything about that? I would love to help somehow if I can. Thanks, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Hi Michele,    Well, I haven't checked out here on the list for quite awhile since Maggie has been sick, I am so very thankful that today I decided to take a peek and see what was going on now that Maggie is a little more stable.     When I went out to the radio station to check out what was written I almost fell off my chair!! Dr. Hong (Peds Rheumy) was sitting here by my side and I asked her how I could fix the entire last paragraph that was written. She laughed! (I didn't think it was so funny!) The medication that is said to be the " Cure All " for Maggie is sitting over on the counter in her room by the sink, it may help Maggie in some area's but is no way close to keeping her alive!! She is taking her Chemo, Kineret and Methotrexate for the Behcets, may take Thalidomide again someday but for now.....it does nothing but sit there.     We have been here almost 4 months now, Maggie is doing better this month then she was two months ago but still has a long way to go.. We live in a very old farm house that has a teenie tiny bathroom that is not even big enough for Maggie to get into with her wheelchair. We would like to use the money from the benefit to help us  remodel ou bathroom and make it bigger and get a bigger tub that Maggie can walk into so that she can soak her joints and ease her pain. She can no longer stand in our shower.        I haven't been a very good group member lately. I don't get out here much at all to see what is going on. We do keep all of you in our prayers, and believe me, we pray a lot!!        Because I haven't been out here in so long I now have hundreds of email to go through so I think there is no time like the present!!        Thank you for being such a great friend and sticking with our family throughout Maggie's entire journey, you guys have all gotten me through some extremely tough times over the last 4 months, I couldn't have done this without your support!!     With Love,      Diane and Maggie age 12 (Neuro Behcets/ Behcets, Glaucoma, Uveitis, Vasculitis)              and Allyson age 15 (Lupus)           From: Tepper, Michele <MTepper@...> Subject: RE: Maggie? " " < > Date: Monday, November 16, 2009, 4:26 PM  I found this information online at a website www.2dorks.com<http://www.2dorks. com> I am not sure what they would like for donations for the auction or if there is a way to get in on the raffle. Maybe someone would know? Michele ( 22, spondy) Unbreakable Spirit Benefit for Maggie Wiederholt When: Saturday, December 5, 2009 from 3pm-11pm Where: Cedar Lanes Where: 605 E 7th St., Tipton, IA The celebration for Maggie's " Unbreakable Spirit " will include a steak dinner, a silent auction, " Bowling For Maggie " , a 50/50 raffle and a DJ dance wrapping up the night to celebrate all the wonderful memories Maggie has had in these 12 years she has blessed all of our hearts. Maggie Wiederholt is a 12 year old from Walcott, IA that was diagnosed with Osteogenesis Imperfecta also known as " Brittle Bones Disease " in 1997 as an infant. Maggie has spent countless months at a time in the hospital, all throughout her life, with numerous fractures and breaks all over her body. The majority of the last 3 years have been spent lying in hospitals beds while a baffling and serious medical condition known as Bechets Disease wreaks havoc on her frail body. Research done in the U. S. has found Maggie's case to be the worst one ever studied. This disease has taken over her entire body, and as early as September of this year, her condition worsened so much that she was admitted to the Pediatric Intensive Care Unit at the University of Iowa Hospital so that she could be monitored around the clock. Since being diagnosed with Bechets Disease, her doctors have found the only known medication to help with this disease that would not attack other organs in her body, but it is only legal in Turkey. Her doctors are working with other doctors in Turkey to find a way to have this drug approved and sent to the United States. This is her only chance for survival. Please send donations to Event Coordinator: Neilson 1576 Highway 61 Delmar, IA 52037 Or Donations Advisor: Schlotfeldt 4322 W. Lombard Davenport, IA 52804 Subject: Re: Maggie? ____________ _________ _________ __ From: @group s.com [mailto: @group s.com] On Behalf Of veristroudaol (DOT) com Sent: Friday, November 13, 2009 9:17 PM @group s.com , I sent a note to Diane asking about the benefit but have not received a response. But then that was a couple of weeks ago I think. I have not heard any more about the benefit. She did mention on one of her updates that Maggie will be singing on the radio for the Children's Miracle Network soon. If any one hears I hope they will post info here. Veri & Jaye 15 poly Maggie? Anyone hear anything recently from Diane? I was just checking the carepage and there has not been an update since the 8th. Just wondering how she is doing. Also, some messages mention a benefit for Maggie. Does anyone know anything about that? I would love to help somehow if I can. Thanks, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Prayers still coming for our strongest warrior.Go Maggie Go!!!! ________________________________ From: Diane Wiederholt <hockeytough@...> Sent: Monday, November 16, 2009 5:46:36 PM Subject: RE: Maggie?  Hi Michele,    Well, I haven't checked out here on the list for quite awhile since Maggie has been sick, I am so very thankful that today I decided to take a peek and see what was going on now that Maggie is a little more stable.     When I went out to the radio station to check out what was written I almost fell off my chair!! Dr. Hong (Peds Rheumy) was sitting here by my side and I asked her how I could fix the entire last paragraph that was written. She laughed! (I didn't think it was so funny!) The medication that is said to be the " Cure All " for Maggie is sitting over on the counter in her room by the sink, it may help Maggie in some area's but is no way close to keeping her alive!! She is taking her Chemo, Kineret and Methotrexate for the Behcets, may take Thalidomide again someday but for now.....it does nothing but sit there.     We have been here almost 4 months now, Maggie is doing better this month then she was two months ago but still has a long way to go.. We live in a very old farm house that has a teenie tiny bathroom that is not even big enough for Maggie to get into with her wheelchair. We would like to use the money from the benefit to help us  remodel ou bathroom and make it bigger and get a bigger tub that Maggie can walk into so that she can soak her joints and ease her pain. She can no longer stand in our shower.        I haven't been a very good group member lately. I don't get out here much at all to see what is going on. We do keep all of you in our prayers, and believe me, we pray a lot!!        Because I haven't been out here in so long I now have hundreds of email to go through so I think there is no time like the present!!        Thank you for being such a great friend and sticking with our family throughout Maggie's entire journey, you guys have all gotten me through some extremely tough times over the last 4 months, I couldn't have done this without your support!!     With Love,      Diane and Maggie age 12 (Neuro Behcets/ Behcets, Glaucoma, Uveitis, Vasculitis)              and Allyson age 15 (Lupus)           From: Tepper, Michele <MTepper@ftportfolio s.com> Subject: RE: Maggie? " @group s.com " < @group s.com> Date: Monday, November 16, 2009, 4:26 PM  I found this information online at a website www.2dorks.com<http://www.2dorks. com> I am not sure what they would like for donations for the auction or if there is a way to get in on the raffle. Maybe someone would know? Michele ( 22, spondy) Unbreakable Spirit Benefit for Maggie Wiederholt When: Saturday, December 5, 2009 from 3pm-11pm Where: Cedar Lanes Where: 605 E 7th St., Tipton, IA The celebration for Maggie's " Unbreakable Spirit " will include a steak dinner, a silent auction, " Bowling For Maggie " , a 50/50 raffle and a DJ dance wrapping up the night to celebrate all the wonderful memories Maggie has had in these 12 years she has blessed all of our hearts. Maggie Wiederholt is a 12 year old from Walcott, IA that was diagnosed with Osteogenesis Imperfecta also known as " Brittle Bones Disease " in 1997 as an infant. Maggie has spent countless months at a time in the hospital, all throughout her life, with numerous fractures and breaks all over her body. The majority of the last 3 years have been spent lying in hospitals beds while a baffling and serious medical condition known as Bechets Disease wreaks havoc on her frail body. Research done in the U. S. has found Maggie's case to be the worst one ever studied. This disease has taken over her entire body, and as early as September of this year, her condition worsened so much that she was admitted to the Pediatric Intensive Care Unit at the University of Iowa Hospital so that she could be monitored around the clock. Since being diagnosed with Bechets Disease, her doctors have found the only known medication to help with this disease that would not attack other organs in her body, but it is only legal in Turkey. Her doctors are working with other doctors in Turkey to find a way to have this drug approved and sent to the United States. This is her only chance for survival. Please send donations to Event Coordinator: Neilson 1576 Highway 61 Delmar, IA 52037 Or Donations Advisor: Schlotfeldt 4322 W. Lombard Davenport, IA 52804 Subject: Re: Maggie? ____________ _________ _________ __ From: @group s.com [mailto:jra- list@group s.com] On Behalf Of veristroudaol (DOT) com Sent: Friday, November 13, 2009 9:17 PM @group s.com , I sent a note to Diane asking about the benefit but have not received a response. But then that was a couple of weeks ago I think. I have not heard any more about the benefit. She did mention on one of her updates that Maggie will be singing on the radio for the Children's Miracle Network soon. If any one hears I hope they will post info here. Veri & Jaye 15 poly Maggie? Anyone hear anything recently from Diane? I was just checking the carepage and there has not been an update since the 8th. Just wondering how she is doing. Also, some messages mention a benefit for Maggie. Does anyone know anything about that? I would love to help somehow if I can. Thanks, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Diane, We understand your being busy. You've not seen your home in four months. We continue to pray for you every day and check the carepage to see how you are all getting along. I am glad that you had a moment to check in. Please know that we think of you so very often and Maggie also. How is doing? She must miss her mom at home but I know that she comes to see you regularly. Veri & Jaye 15 poly Maggie? Anyone hear anything recently from Diane? I was just checking the carepage and there has not been an update since the 8th. Just wondering how she is doing. Also, some messages mention a benefit for Maggie. Does anyone know anything about that? I would love to help somehow if I can. Thanks, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Please do not think you have not been a good group member! We all do what we can, when we can. I just worry if I do not see an update to the Carepage for a few days. I was happy to find the info on the benefit, but you are right, the info contained was a bit off. But at least they got something out there. I love your idea of using some of the proceeds to make accomodations for Maggie. She deserves things to be a bit easier for her. As do you. I'll keep checking that carepage, and you check in when you can, or when you need a safe place to vent. Praying for your family, the medical staff, and all of your supporters, Michele ( 22, spondy) ________________________________ From: [mailto: ] On Behalf Of Diane Wiederholt Sent: Monday, November 16, 2009 5:47 PM Subject: RE: Maggie? Hi Michele, Well, I haven't checked out here on the list for quite awhile since Maggie has been sick, I am so very thankful that today I decided to take a peek and see what was going on now that Maggie is a little more stable. When I went out to the radio station to check out what was written I almost fell off my chair!! Dr. Hong (Peds Rheumy) was sitting here by my side and I asked her how I could fix the entire last paragraph that was written. She laughed! (I didn't think it was so funny!) The medication that is said to be the " Cure All " for Maggie is sitting over on the counter in her room by the sink, it may help Maggie in some area's but is no way close to keeping her alive!! She is taking her Chemo, Kineret and Methotrexate for the Behcets, may take Thalidomide again someday but for now.....it does nothing but sit there. We have been here almost 4 months now, Maggie is doing better this month then she was two months ago but still has a long way to go.. We live in a very old farm house that has a teenie tiny bathroom that is not even big enough for Maggie to get into with her wheelchair. We would like to use the money from the benefit to help us remodel ou bathroom and make it bigger and get a bigger tub that Maggie can walk into so that she can soak her joints and ease her pain. She can no longer stand in our shower. I haven't been a very good group member lately. I don't get out here much at all to see what is going on. We do keep all of you in our prayers, and believe me, we pray a lot!! Because I haven't been out here in so long I now have hundreds of email to go through so I think there is no time like the present!! Thank you for being such a great friend and sticking with our family throughout Maggie's entire journey, you guys have all gotten me through some extremely tough times over the last 4 months, I couldn't have done this without your support!! With Love, Diane and Maggie age 12 (Neuro Behcets/ Behcets, Glaucoma, Uveitis, Vasculitis) and Allyson age 15 (Lupus) From: Tepper, Michele <MTepper@...<mailto:MTepper%40ftportfolios.com>> Subject: RE: Maggie? " <mailto: %40> " < <mailto: %40>> Date: Monday, November 16, 2009, 4:26 PM I found this information online at a website www.2dorks.com<http://www.2dorks. com> I am not sure what they would like for donations for the auction or if there is a way to get in on the raffle. Maybe someone would know? Michele ( 22, spondy) Unbreakable Spirit Benefit for Maggie Wiederholt When: Saturday, December 5, 2009 from 3pm-11pm Where: Cedar Lanes Where: 605 E 7th St., Tipton, IA The celebration for Maggie's " Unbreakable Spirit " will include a steak dinner, a silent auction, " Bowling For Maggie " , a 50/50 raffle and a DJ dance wrapping up the night to celebrate all the wonderful memories Maggie has had in these 12 years she has blessed all of our hearts. Maggie Wiederholt is a 12 year old from Walcott, IA that was diagnosed with Osteogenesis Imperfecta also known as " Brittle Bones Disease " in 1997 as an infant. Maggie has spent countless months at a time in the hospital, all throughout her life, with numerous fractures and breaks all over her body. The majority of the last 3 years have been spent lying in hospitals beds while a baffling and serious medical condition known as Bechets Disease wreaks havoc on her frail body. Research done in the U. S. has found Maggie's case to be the worst one ever studied. This disease has taken over her entire body, and as early as September of this year, her condition worsened so much that she was admitted to the Pediatric Intensive Care Unit at the University of Iowa Hospital so that she could be monitored around the clock. Since being diagnosed with Bechets Disease, her doctors have found the only known medication to help with this disease that would not attack other organs in her body, but it is only legal in Turkey. Her doctors are working with other doctors in Turkey to find a way to have this drug approved and sent to the United States. This is her only chance for survival. Please send donations to Event Coordinator: Neilson 1576 Highway 61 Delmar, IA 52037 Or Donations Advisor: Schlotfeldt 4322 W. Lombard Davenport, IA 52804 Subject: Re: Maggie? ____________ _________ _________ __ From: @group s.com [mailto: @group s.com] On Behalf Of veristroudaol (DOT) com Sent: Friday, November 13, 2009 9:17 PM @group s.com , I sent a note to Diane asking about the benefit but have not received a response. But then that was a couple of weeks ago I think. I have not heard any more about the benefit. She did mention on one of her updates that Maggie will be singing on the radio for the Children's Miracle Network soon. If any one hears I hope they will post info here. Veri & Jaye 15 poly Maggie? Anyone hear anything recently from Diane? I was just checking the carepage and there has not been an update since the 8th. Just wondering how she is doing. Also, some messages mention a benefit for Maggie. Does anyone know anything about that? I would love to help somehow if I can. Thanks, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Hi Diane, Don't you even worry about trying to catch up with all of the emails! That can feel overwhelming, sometimes! Just know that we are all keeping you and Maggie (and the rest of the family) close in our hearts and thoughts and when the time is right for you, we'll all be here. Fortunately, we have some very special people here that do their best to help keep everyone in the loop by reposting some of the important carepage bulletins. Many have signed up to get emails with those updates, as well. Your focus is exactly where it needs to be. As far as the bathroom re-model ... that sounds like such a fantastic idea! Accessibility is such an important factor to take into consideration, especially since they're talking about Maggie going home for the new year. I've done a bit of research on some of those walk-in tubs and some sound just fabulous. It's a big project but very exciting! Lots of love to all of you but especially our dear Maggie! Aloha, Georgina Maggie? Anyone hear anything recently from Diane? I was just checking the carepage and there has not been an update since the 8th. Just wondering how she is doing. Also, some messages mention a benefit for Maggie. Does anyone know anything about that? I would love to help somehow if I can. Thanks, Michele ( 22, spondy) Quote Link to comment Share on other sites More sharing options...
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