Guest guest Posted February 21, 2005 Report Share Posted February 21, 2005 , Maybe the volume map has auto sens enabled. You and I will need to make sure we dont drown each other out when trying to talk in the rain. LOL *---* *---* *---* *---* *---* Whether they find a life there or not, I think Jupiter should be called an enemy planet. --Jack Handley & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Hi Jackie! Welcome back from your vacation! Looking forward to " hearing " about it! Here's hoping the insurance company does a turnaround and you have your approval soon. Best wishes to you! Patti Surgery Day 11/25/02 (What A Day!) Hook Up Day BWP 1/2/03 (A Happy Day!) 3G 1/31/03 (An Even Happier Day!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2005 Report Share Posted October 1, 2005 Jackie, Congratulations on getting bilateral hearing capabilities. Mazel Tov! You gave yourself an excellent gift on the occasion of Rosh Hashanah. Happy New Year to you and all others in this glorius forum. Ravi Re: Faye Hi, Faye, All the very best to you with your upcoming surgery. I sincerely hope that, once you are hooked up, you can get some real results this time. Who knows - the new implant may even work as a " trainer " for the old one to follow. It could happen! Easy surgery and recovery! ) Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2005 Report Share Posted October 8, 2005 I just had to respond! I have PBC, just dx a few weeks ago but also have polymyositis (another autoimmune disease similar to lupus), endometriosis, ibm, had an ovary removed, have osteoarthritis, and more and was also made to feel like I was a hypochondriac or it was all in my head before my dx of polymyositis 7 years ago. It was enough to make me crazy....I was only 30 with that dx too. Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 Hi, Lori, Thanks for sharing your experience with Kiera & the glow bracelet. I'm glad things are settling down & her eyes are going to be fine. The ruined clothing and car seat spots are the least of it. These things aren't just for Halloween. They are used to make all kinds of things used as party favors for kids all through the year. So your message is worth repeating. See? Things CAN happen! (We worrywort moms DID have something to worry about! LOL) Just glad this didn't turn out to be catastrophic & Lori was so quick to react in exactly the right way. ) Jackie jackie... yes, i'm glad it wasn't worse & yes, it does need to be passed on ~ THE SHEPLERS ~ Spike & Lori , Brit, Kiara, Ruby & Karleigh " What I've said, that will I bring about & what I've planned, THAT WILL I DO. " Isaiah 46:11 †+ + + + + + + + + + + + + + + + + + ~ join & read about our family ~ thesheplercrew Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Oh Annita, Iam sorry hun, I am going to have to delete your original post.As the owner of hepcassoc.org ask us not to post anything without her permission. So in keeping with her request I am going to do that. But there is another letter similar that is on www.heppo.com that is by the original write of this letter that she gives you permission to use her letter. > > > This is a great letter .... > > > Here is that letter u mentioned > I hope you dont mind i posted it for you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 But here is one that we can use. And it is so sweet. The author said you can print and give to your friends. I love it. It is from http://www.heppoworld.com And it a really wonderful site to visit. Letter to People Without Hepatitis C Note: This letter is one of the best found written for people without Hepatitis C. Please feel free to print this letter and give it to those that need to understand. Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me... Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too. Please understand the difference between " happy " and " healthy " . When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, " Oh, you're sounding better! " . I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome. Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, " sitting " , " walking " , " thinking " , " being sociable " and so on ... it applies to everything. That's what Hepatitis does to you. Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, " But you did it before! " , if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that " getting out and doing things " does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, " You just need to push yourself more, exercise harder... " Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, Hepatitis may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive. If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me. Authored by Bek Oberin Thank you Bek Oberin for your wonderful spirit!!! > > > > > > This is a great letter .... > > > > > > Here is that letter u mentioned > > I hope you dont mind i posted it for you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 That was really sad to have to do that....It hurts me deeply... I was given permission months ago to share with whoever I though it may help....Maybe i dont understand > > > > > > This is a great letter .... > > > > > > Here is that letter u mentioned > > I hope you dont mind i posted it for you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Im sorry you got your feeling hurt Annita , I think there must be a mis-understanding, if the person who wrote that asked Janet not to post it without permission, she might not have known if you got that permission,, thats all, I think she was trying to keep things straight.. dont be hurt honey! sodapop_4you <sodapop_4you@...> wrote: That was really sad to have to do that....It hurts me deeply...I was given permission months ago to share with whoever I though it may help....Maybe i dont understand> >> > > > This is a great letter ....> > > > > > Here is that letter u mentioned> > I hope you dont mind i posted it for you> >> Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2005 Report Share Posted December 3, 2005 The site owner of Hepcassoc. wrote Doug and I ask us not to post anything from her site without permission from her. So in keep with our agreement, I have to do so. As a responsible owner, I must make sure that I keep the peace with all other site owners and their rights to privacy. Annita honey, I didn't mean anything against you honey. Just keeping a agreement with the site owner at Hepcassoc. Love JanetJackie on <redjaxjm@...> wrote: Im sorry you got your feeling hurt Annita , I think there must be a mis-understanding, if the person who wrote that asked Janet not to post it without permission, she might not have known if you got that permission,, thats all, I think she was trying to keep things straight.. dont be hurt honey! sodapop_4you <sodapop_4you@...> wrote: That was really sad to have to do that....It hurts me deeply...I was given permission months ago to share with whoever I though it may help....Maybe i dont understand> >> > > > This is a great letter ....> > > > > > Here is that letter u mentioned> > I hope you dont mind i posted it for you> >> Jackie I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2005 Report Share Posted December 3, 2005 OH Janet I totally understand,, Annita told me she wrote them and got permission when she first saw that to post anywhere she wanted.. you certainly do not have to justify that to me,, honest!!! love you jackiejanet <doc_jade@...> wrote: The site owner of Hepcassoc. wrote Doug and I ask us not to post anything from her site without permission from her. So in keep with our agreement, I have to do so. As a responsible owner, I must make sure that I keep the peace with all other site owners and their rights to privacy. Annita honey, I didn't mean anything against you honey. Just keeping a agreement with the site owner at Hepcassoc. Love JanetJackie on <redjaxjm@...> wrote: Im sorry you got your feeling hurt Annita , I think there must be a mis-understanding, if the person who wrote that asked Janet not to post it without permission, she might not have known if you got that permission,, thats all, I think she was trying to keep things straight.. dont be hurt honey! sodapop_4you <sodapop_4you@...> wrote: That was really sad to have to do that....It hurts me deeply...I was given permission months ago to share with whoever I though it may help....Maybe i dont understand> >> > > > This is a great letter ....> > > > > > Here is that letter u mentioned> > I hope you dont mind i posted it for you> >> Jackie I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Hello , Thank you so much for reading my posts as well as some the information about not bracing if it is congential. I want to reassure you that I am not blaiming Leigh Ann, Jessie's birth mother, for anything more than not being more clear about what Jessie's condition is as well as what the doctors are planing. Leigh Ann has cerebal paslsy in which she does not have any use of her left arm. She can walk but with a cane, therefore is mostly wheelchair bound. She picks Jessie up by his arms in which we know could dislocate bones. I am pretty sure picking him up by his limbs cannot be good on his back either. We had Jessie the month of July in which Jessie was 8 months old. Jessie was behind on doing things like holding his bottle, he could crawl but not very well. Jessie is very smart and had learned 4 words, to hold his bottle, crawl a lot better, even pull himself up on things while he was here in July. He is now 14 months, nearly 15 months, and still hasn't learned anything more than what he had in July. We are currently going through a custody suit. has no access to any medical information due to Leigh Ann not putting him down on Jessie's medical contact list. Leigh Ann makes up numerous stories about Jessie. Back in August she told that Jessie was having back surgery where he was getting rods in his spine. After numerous phone calls we found out that he hadn't even seen a doctor for his scoliosis yet. The most frustrating part is not knowing if what she says is true or just another story. Today Jessie was to have a CAT scan. Leigh Ann waited until 6pm this evening to tell us it was rescheduled for next wednesday due to Jessie having a cold. Talk about a long day of worry. All we could think is that something must of went poorly. Leigh Ann also makes it very difficult for to reach her. She hangs up or doesn't answer the phone. When you ask her questions she either repeats the same answers or claims it is to hard on her to talk about it. She has even claimed that all the questions are threatening her. Leigh Ann also changes email addresses weekly sometimes daily making it difficult to reach her by email. I believe we now have a total well over 30 since August 1st. She is very bitter over the devorce and seems to be using Jessie as a way of payback to . There is much more than just Jessie's medical she isn't being honest about. WoW I just reread all this and it is no wonder we don't sleep well around here. I wanted you to know none of us here are blaiming Leigh Ann for Jessie's scoliosis, just upset that we cannot get any information on what is the truth and what isn't. It could be that she is not even giving us the correct degrees on the curvature. Hopefully Jessie's medical records will be here soon. We have an attorney who is starting to give his full attention to our case this monday. Maybe he can obtain the information about Jessie's scoliosis quicker as we will need it for court. I want to add that we have no intentions of keeping Jessie from Leigh Ann, we just want what is best for Jessie. For Jessie to be where he will get the best care. Thanks again. I am off to do some research on congental scoliosis. Jackie > > Hi Jackie, > I have read some of the posts, but may have missed some... I am not > sure of the exact situation, but I can tell you that our dd has > birth defects and congenital scoliosis. We were actually going to > adopt 6 years ago, got all the paper work and tests and were on a > waiting list to adopt when we were surprised by a pregnancy, (and > then another). My husband and myself have discussed many times how > if we would have adopted our daughter we would have been saying that > her birth mother must have done drugs or not taken the proper care > of herself, in order for our daughter to have the birth defects. I > took prenatal vitamins, thought I took pretty good care of myself, > yet the feeling of guilt I still have is always nagging at me. My > point is that this can happen to anyone, it does not necessarily > mean that the birth mother has done something wrong. I don't know > the facts of your situation, but Curve progression usually happens > at a growth spurt, not usually as a function of what someone has or > has not done. This sis what If the curve is congenital, meaning > there are defects in the bones of the spine, a brace is usually not > prescribed. We have been told that casting or bracing is only used > for idiopathic scoliosis not for congenital. It must be very > frustrating to be in your position. I can see that it weighs > heavily on your heart to do everything you can to help . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Wow, what a tangled situation! If I may ask, are you Jessie's grandma? I am having a hard time figuring out the family dynamics. Sorry! As for lifting him by his arms, it really isn't good for any child never mind one that has spinal issues. I wish I could help you sort this out - I am actually surprised that they didn't do the CT scan - unless they were going to be putting him out for it, then I am not surprised. What I am wondering is if the appt. was even scheduled. Jackie, I am in Ohio as well - if I can offer any support to you here, please let me know! gail Re: Jackie Hello ,Thank you so much for reading my posts as well as some the information about not bracing if it is congential. I want to reassure you that I am not blaiming Leigh Ann, Jessie's birth mother, for anything more than not being more clear about what Jessie's condition is as well as what the doctors are planing. Leigh Ann has cerebal paslsy in which she does not have any use of her left arm. She can walk but with a cane, therefore is mostly wheelchair bound. She picks Jessie up by his arms in which we know could dislocate bones. I am pretty sure picking him up by his limbs cannot be good on his back either. We had Jessie the month of July in which Jessie was 8 months old. Jessie was behind on doing things like holding his bottle, he could crawl but not very well. Jessie is very smart and had learned 4 words, to hold his bottle, crawl a lot better, even pull himself up on things while he was here in July. He is now 14 months, nearly 15 months, and still hasn't learned anything more than what he had in July. We are currently going through a custody suit. has no access to any medical information due to Leigh Ann not putting him down on Jessie's medical contact list. Leigh Ann makes up numerous stories about Jessie. Back in August she told that Jessie was having back surgery where he was getting rods in his spine. After numerous phone calls we found out that he hadn't even seen a doctor for his scoliosis yet. The most frustrating part is not knowing if what she says is true or just another story. Today Jessie was to have a CAT scan. Leigh Ann waited until 6pm this evening to tell us it was rescheduled for next wednesday due to Jessie having a cold. Talk about a long day of worry. All we could think is that something must of went poorly. Leigh Ann also makes it very difficult for to reach her. She hangs up or doesn't answer the phone. When you ask her questions she either repeats the same answers or claims it is to hard on her to talk about it. She has even claimed that all the questions are threatening her. Leigh Ann also changes email addresses weekly sometimes daily making it difficult to reach her by email. I believe we now have a total well over 30 since August 1st. She is very bitter over the devorce and seems to be using Jessie as a way of payback to . There is much more than just Jessie's medical she isn't being honest about. WoW I just reread all this and it is no wonder we don't sleep well around here. I wanted you to know none of us here are blaiming Leigh Ann for Jessie's scoliosis, just upset that we cannot get any information on what is the truth and what isn't. It could be that she is not even giving us the correct degrees on the curvature. Hopefully Jessie's medical records will be here soon. We have an attorney who is starting to give his full attention to our case this monday. Maybe he can obtain the information about Jessie's scoliosis quicker as we will need it for court. I want to add that we have no intentions of keeping Jessie from Leigh Ann, we just want what is best for Jessie. For Jessie to be where he will get the best care. Thanks again. I am off to do some research on congental scoliosis. Jackie>> Hi Jackie,> I have read some of the posts, but may have missed some... I am not > sure of the exact situation, but I can tell you that our dd has > birth defects and congenital scoliosis. We were actually going to > adopt 6 years ago, got all the paper work and tests and were on a > waiting list to adopt when we were surprised by a pregnancy, (and > then another). My husband and myself have discussed many times how > if we would have adopted our daughter we would have been saying that > her birth mother must have done drugs or not taken the proper care > of herself, in order for our daughter to have the birth defects. I > took prenatal vitamins, thought I took pretty good care of myself, > yet the feeling of guilt I still have is always nagging at me. My > point is that this can happen to anyone, it does not necessarily > mean that the birth mother has done something wrong. I don't know > the facts of your situation, but Curve progression usually happens > at a growth spurt, not usually as a function of what someone has or > has not done. This sis what If the curve is congenital, meaning > there are defects in the bones of the spine, a brace is usually not > prescribed. We have been told that casting or bracing is only used > for idiopathic scoliosis not for congenital. It must be very > frustrating to be in your position. I can see that it weighs > heavily on your heart to do everything you can to help . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Gail, I think Jackie mentioned that she is his stepmother. --------- Re: Jackie Hello ,Thank you so much for reading my posts as well as some the information about not bracing if it is congential. I want to reassure you that I am not blaiming Leigh Ann, Jessie's birth mother, for anything more than not being more clear about what Jessie's condition is as well as what the doctors are planing. Leigh Ann has cerebal paslsy in which she does not have any use of her left arm. She can walk but with a cane, therefore is mostly wheelchair bound. She picks Jessie up by his arms in which we know could dislocate bones. I am pretty sure picking him up by his limbs cannot be good on his back either. We had Jessie the month of July in which Jessie was 8 months old. Jessie was behind on doing things like holding his bottle, he could crawl but not very well. Jessie is very smart and had learned 4 words, to hold his bottle, crawl a lot better, even pull himself up on things while he was here in July. He is now 14 months, nearly 15 months, and still hasn't learned anything more than what he had in July. We are currently going through a custody suit. has no access to any medical information due to Leigh Ann not putting him down on Jessie's medical contact list. Leigh Ann makes up numerous stories about Jessie. Back in August she told that Jessie was having back surgery where he was getting rods in his spine. After numerous phone calls we found out that he hadn't even seen a doctor for his scoliosis yet. The most frustrating part is not knowing if what she says is true or just another story. Today Jessie was to have a CAT scan. Leigh Ann waited until 6pm this evening to tell us it was rescheduled for next wednesday due to Jessie having a cold. Talk about a long day of worry. All we could think is that something must of went poorly. Leigh Ann also makes it very difficult for to reach her. She hangs up or doesn't answer the phone. When you ask her questions she either repeats the same answers or claims it is to hard on her to talk about it. She has even claimed that all the questions are threatening her. Leigh Ann also changes email addresses weekly sometimes daily making it difficult to reach her by email. I believe we now have a total well over 30 since August 1st. She is very bitter over the devorce and seems to be using Jessie as a way of payback to . There is much more than just Jessie's medical she isn't being honest about. WoW I just reread all this and it is no wonder we don't sleep well around here. I wanted you to know none of us here are blaiming Leigh Ann for Jessie's scoliosis, just upset that we cannot get any information on what is the truth and what isn't. It could be that she is not even giving us the correct degrees on the curvature. Hopefully Jessie's medical records will be here soon. We have an attorney who is starting to give his full attention to our case this monday. Maybe he can obtain the information about Jessie's scoliosis quicker as we will need it for court. I want to add that we have no intentions of keeping Jessie from Leigh Ann, we just want what is best for Jessie. For Jessie to be where he will get the best care. Thanks again. I am off to do some research on congental scoliosis. Jackie>> Hi Jackie,> I have read some of the posts, but may have missed some... I am not > sure of the exact situation, but I can tell you that our dd has > birth defects and congenital scoliosis. We were actually going to > adopt 6 years ago, got all the paper work and tests and were on a > waiting list to adopt when we were surprised by a pregnancy, (and > then another). My husband and myself have discussed many times how > if we would have adopted our daughter we would have been saying that > her birth mother must have done drugs or not taken the proper care > of herself, in order for our daughter to have the birth defects. I > took prenatal vitamins, thought I took pretty good care of myself, > yet the feeling of guilt I still have is always nagging at me. My > point is that this can happen to anyone, it does not necessarily > mean that the birth mother has done something wrong. I don't know > the facts of your situation, but Curve progression usually happens > at a growth spurt, not usually as a function of what someone has or > has not done. This sis what If the curve is congenital, meaning > there are defects in the bones of the spine, a brace is usually not > prescribed. We have been told that casting or bracing is only used > for idiopathic scoliosis not for congenital. It must be very > frustrating to be in your position. I can see that it weighs > heavily on your heart to do everything you can to help . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Naw, I am not Jessie's grandma. Come Feb. 14th I will be Jessie's step mother. I love him like my own. Nice to hear from you Gail. As far as I know they where putting him out for the CT Scan. Today we are going to try and see if Jessie really had the appointment yesterday and try to see if he really has one next wednesday. Sometimes, if you can get the right receptionist, they will give out that information. Unfortunately, the situation is worse than just that. She also claims to move all the time. Now isn't allowed to phone her again. Hopefully that won't last to awful long. In 16 days we will be in Arkansas. Then we will personally go to Arkansas Childrens Hospital. Thank you very much Gail for offering support. I am surely going to need it specially if what we are told by Leigh Ann is true. Jackie > > > > Hi Jackie, > > I have read some of the posts, but may have missed some... I am > not > > sure of the exact situation, but I can tell you that our dd has > > birth defects and congenital scoliosis. We were actually going to > > adopt 6 years ago, got all the paper work and tests and were on a > > waiting list to adopt when we were surprised by a pregnancy, (and > > then another). My husband and myself have discussed many times > how > > if we would have adopted our daughter we would have been saying > that > > her birth mother must have done drugs or not taken the proper care > > of herself, in order for our daughter to have the birth defects. > I > > took prenatal vitamins, thought I took pretty good care of myself, > > yet the feeling of guilt I still have is always nagging at me. > My > > point is that this can happen to anyone, it does not necessarily > > mean that the birth mother has done something wrong. I don't know > > the facts of your situation, but Curve progression usually happens > > at a growth spurt, not usually as a function of what someone has > or > > has not done. This sis what If the curve is congenital, meaning > > there are defects in the bones of the spine, a brace is usually > not > > prescribed. We have been told that casting or bracing is only > used > > for idiopathic scoliosis not for congenital. It must be very > > frustrating to be in your position. I can see that it weighs > > heavily on your heart to do everything you can to help . > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Jackie, Scoliosis treatment can be very controversial . I can tell you that when our dd was diagnosed with congenital scoliosis, my husband and I were in a very big disagreement about what to do. He wanted surgery immediately and I did not. He liked the dr. and I did not trust him. It was terrible and there was no way I was going to do major surgery on our dd without thoroughly investigating all the possibilities. We finally ended up traveling far away to a different dr. that we both agreed we trusted. It was very hard though. I was and still am pretty defensive, I hope I didn't offend you. Just wanted to give my point of view. I have met a few people who have used a brace for congenital, but not too many. Let me know if you need specifics about congenital. If the curve gets to where it is affecting the lungs, then surgery is considered necessary. The latest surgery is the VEPTR surgery. Gail and can tell you about that if it gets to where you need to know about it. If my dd had idiopathic I would be doing the casting in a heartbeat. > > > > Hi Jackie, > > I have read some of the posts, but may have missed some... I am > not > > sure of the exact situation, but I can tell you that our dd has > > birth defects and congenital scoliosis. We were actually going to > > adopt 6 years ago, got all the paper work and tests and were on a > > waiting list to adopt when we were surprised by a pregnancy, (and > > then another). My husband and myself have discussed many times > how > > if we would have adopted our daughter we would have been saying > that > > her birth mother must have done drugs or not taken the proper care > > of herself, in order for our daughter to have the birth defects. > I > > took prenatal vitamins, thought I took pretty good care of myself, > > yet the feeling of guilt I still have is always nagging at me. > My > > point is that this can happen to anyone, it does not necessarily > > mean that the birth mother has done something wrong. I don't know > > the facts of your situation, but Curve progression usually happens > > at a growth spurt, not usually as a function of what someone has > or > > has not done. This sis what If the curve is congenital, meaning > > there are defects in the bones of the spine, a brace is usually > not > > prescribed. We have been told that casting or bracing is only > used > > for idiopathic scoliosis not for congenital. It must be very > > frustrating to be in your position. I can see that it weighs > > heavily on your heart to do everything you can to help . > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 , No worries I am not one to get offended. If we find out Jessie does have congenital scoliosis I will take you up on the information. and I will be more at ease on the whole situation when we are able to make the trip to Arkansas and find out up front exactally what the situation is. Unfortunately we both got laid-off from our jobs December 22nd. Therefore our trip we had planned December 26th had to be delayed. Since Leigh Ann has made it difficult to get any information about Jessie our goal is to learn as much as we can before we make our January trip so we know what to ask and maybe understand what we will be told. I apologize if I appear overly anxious about something being done for Jessie now, I just fear the waiting will give time for the curve to worsen. I try to ease both and I's mind by thinking that there is a great possiblity that Leigh Ann is over exaggerating as she has a bad habit of doing so. It seems that every day she comes up with something new that was never mentioned before. We have looked up at the Arkansas Childrens Hospital website information on Dr. Blasier. He looks impressive in which is the reason why we are wondering if Leigh Ann is only telling us the worse case options. So far since September the only facts she has given us are... Jessie does have scoliosis, Jessie's curve went from 35 degrees to a 57 degree from September to December, Jessie's will have a CAT scan in which was to be on the 28th but was delayed to this coming wednesday due to not wanting to put him under with a cold (understandable), that surgery is a good possibility, also that Leigh Ann thinks it is a C curve (when asked she stated that is almostly on the left side, whatever almostly means). When you ask her more questions she feels offended, overwelmed, sometimes threatened in which isn't our intent. We have told her numerous times to just write down the questions and ask Dr. Blasier or simply add to the medical contact list so he can ask himself. Oh goodness, now I am rambling on about things we cannot unfortunately change. We just pray this all can be resolved at the next court date January 17th. I do want to thank you all for responding to my thoughts. All of you have been very helpful. Please don't worry about offending me. I look at everything each one of you can tell me as an eduacation rather it be good or bad. Jackie > > > > > > Hi Jackie, > > > I have read some of the posts, but may have missed some... I am > > not > > > sure of the exact situation, but I can tell you that our dd has > > > birth defects and congenital scoliosis. We were actually going > to > > > adopt 6 years ago, got all the paper work and tests and were on > a > > > waiting list to adopt when we were surprised by a pregnancy, > (and > > > then another). My husband and myself have discussed many times > > how > > > if we would have adopted our daughter we would have been saying > > that > > > her birth mother must have done drugs or not taken the proper > care > > > of herself, in order for our daughter to have the birth > defects. > > I > > > took prenatal vitamins, thought I took pretty good care of > myself, > > > yet the feeling of guilt I still have is always nagging at me. > > My > > > point is that this can happen to anyone, it does not necessarily > > > mean that the birth mother has done something wrong. I don't > know > > > the facts of your situation, but Curve progression usually > happens > > > at a growth spurt, not usually as a function of what someone has > > or > > > has not done. This sis what If the curve is congenital, meaning > > > there are defects in the bones of the spine, a brace is usually > > not > > > prescribed. We have been told that casting or bracing is only > > used > > > for idiopathic scoliosis not for congenital. It must be very > > > frustrating to be in your position. I can see that it weighs > > > heavily on your heart to do everything you can to help . > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Jackie, My suggestion would be to gather as much solid info on early treatment as possible, and get it the the birth mother anonymously. Maybe through another family member........Please read the entire website when you get a chance, and go to the Files section of the CAST Support Group. Download/print the article "Growth as a corrective force in the early treatment of infantile scoliosis" written by Dr. Min Mehta. Also, obtain a copy of "A New Direction". This video will expain the early treatment process and its benefits for infants/young children with progresive infantile scoliosis. E-mail me privately at heather@... with the address you would like the video/info sent to, if you are interested. If Jessie ends up having congenital scoli of some type, definately look into to the VEPTR procedure. Many on this group are familiar with that procedure, as well. My little girl (8yrs) will undergo this procedure in March. Hang in there! HRH Re: Jackie Hello ,Thank you so much for reading my posts as well as some the information about not bracing if it is congential. I want to reassure you that I am not blaiming Leigh Ann, Jessie's birth mother, for anything more than not being more clear about what Jessie's condition is as well as what the doctors are planing. Leigh Ann has cerebal paslsy in which she does not have any use of her left arm. She can walk but with a cane, therefore is mostly wheelchair bound. She picks Jessie up by his arms in which we know could dislocate bones. I am pretty sure picking him up by his limbs cannot be good on his back either. We had Jessie the month of July in which Jessie was 8 months old. Jessie was behind on doing things like holding his bottle, he could crawl but not very well. Jessie is very smart and had learned 4 words, to hold his bottle, crawl a lot better, even pull himself up on things while he was here in July. He is now 14 months, nearly 15 months, and still hasn't learned anything more than what he had in July. We are currently going through a custody suit. has no access to any medical information due to Leigh Ann not putting him down on Jessie's medical contact list. Leigh Ann makes up numerous stories about Jessie. Back in August she told that Jessie was having back surgery where he was getting rods in his spine. After numerous phone calls we found out that he hadn't even seen a doctor for his scoliosis yet. The most frustrating part is not knowing if what she says is true or just another story. Today Jessie was to have a CAT scan. Leigh Ann waited until 6pm this evening to tell us it was rescheduled for next wednesday due to Jessie having a cold. Talk about a long day of worry. All we could think is that something must of went poorly. Leigh Ann also makes it very difficult for to reach her. She hangs up or doesn't answer the phone. When you ask her questions she either repeats the same answers or claims it is to hard on her to talk about it. She has even claimed that all the questions are threatening her. Leigh Ann also changes email addresses weekly sometimes daily making it difficult to reach her by email. I believe we now have a total well over 30 since August 1st. She is very bitter over the devorce and seems to be using Jessie as a way of payback to . There is much more than just Jessie's medical she isn't being honest about. WoW I just reread all this and it is no wonder we don't sleep well around here. I wanted you to know none of us here are blaiming Leigh Ann for Jessie's scoliosis, just upset that we cannot get any information on what is the truth and what isn't. It could be that she is not even giving us the correct degrees on the curvature. Hopefully Jessie's medical records will be here soon. We have an attorney who is starting to give his full attention to our case this monday. Maybe he can obtain the information about Jessie's scoliosis quicker as we will need it for court. I want to add that we have no intentions of keeping Jessie from Leigh Ann, we just want what is best for Jessie. For Jessie to be where he will get the best care. Thanks again. I am off to do some research on congental scoliosis. Jackie>> Hi Jackie,> I have read some of the posts, but may have missed some... I am not > sure of the exact situation, but I can tell you that our dd has > birth defects and congenital scoliosis. We were actually going to > adopt 6 years ago, got all the paper work and tests and were on a > waiting list to adopt when we were surprised by a pregnancy, (and > then another). My husband and myself have discussed many times how > if we would have adopted our daughter we would have been saying that > her birth mother must have done drugs or not taken the proper care > of herself, in order for our daughter to have the birth defects. I > took prenatal vitamins, thought I took pretty good care of myself, > yet the feeling of guilt I still have is always nagging at me. My > point is that this can happen to anyone, it does not necessarily > mean that the birth mother has done something wrong. I don't know > the facts of your situation, but Curve progression usually happens > at a growth spurt, not usually as a function of what someone has or > has not done. This sis what If the curve is congenital, meaning > there are defects in the bones of the spine, a brace is usually not > prescribed. We have been told that casting or bracing is only used > for idiopathic scoliosis not for congenital. It must be very > frustrating to be in your position. I can see that it weighs > heavily on your heart to do everything you can to help . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Jackie, The main thing is to find out if it is idiopathic or congenital. Perhaps it is congenital and that is why they are talking about surgery. I hope you get some info soon. I would be going crazy not knowing. -------------- Original message -------------- From: "Jaqzy" <buckijackie@...> ,No worries I am not one to get offended. If we find out Jessie does have congenital scoliosis I will take you up on the information. and I will be more at ease on the whole situation when we are able to make the trip to Arkansas and find out up front exactally what the situation is. Unfortunately we both got laid-off from our jobs December 22nd. Therefore our trip we had planned December 26th had to be delayed. Since Leigh Ann has made it difficult to get any information about Jessie our goal is to learn as much as we can before we make our January trip so we know what to ask and maybe understand what we will be told. I apologize if I appear overly anxious about something being done for Jessie now, I just fear the waiting will give time for the curve to worsen. I try to ease both and I's mind by thinking that there is a great possiblity that Leigh Ann is over exaggerating as she has a bad habit of doing so. It seems that every day she comes up with something new that was never mentioned before. We have looked up at the Arkansas Childrens Hospital website information on Dr. Blasier. He looks impressive in which is the reason why we are wondering if Leigh Ann is only telling us the worse case options. So far since September the only facts she has given us are... Jessie does have scoliosis, Jessie's curve went from 35 degrees to a 57 degree from September to December, Jessie's will have a CAT scan in which was to be on the 28th but was delayed to this coming wednesday due to not wanting to put him under with a cold (understandable), that surgery is a good possibility, also that Leigh Ann thinks it is a C curve (when asked she stated that is almostly on the left side, whatever almostly means). When you ask her more questions she feels offended, overwelmed, sometimes threatened in which isn't our intent. We have told her numerous times to just write down the questions and ask Dr. Blasier or simply add to the medical contact list so he can ask himself. Oh goodness, now I am rambling on about things we cannot unfortunately change. We just pray this all can be resolved at the next court date January 17th.I do want to thank you all for responding to my thoughts. All of you have been very helpful. Please don't worry about offending me. I look at everything each one of you can tell me as an eduacation rather it be good or bad. Jackie> > >> > > Hi Jackie,> > > I have read some of the posts, but may have missed some... I am > > not > > > sure of the exact situation, but I can tell you that our dd has > > > birth defects and congenital scoliosis. We were actually going > to > > > adopt 6 years ago, got all the paper work and tests and were on > a > > > waiting list to adopt when we were surprised by a pregnancy, > (and > > > then another). My husband and myself have discussed many times > > how > > > if we would have adopted our daughter we would have been saying > > that > > > her birth mother must have done drugs or not taken the proper > care > > > of herself, in order for our daughter to have the birth > defects. > > I > > > took prenatal vitamins, thought I took pretty good care of > myself, > > > yet the feeling of guilt I still have is always nagging at me. > > My > > > point is that this can happen to anyone, it does not necessarily > > > mean that the birth mother has done something wrong. I don't > know > > > the facts of your situation, but Curve progression usually > happens > > > at a growth spurt, not usually as a function of what someone has > > or > > > has not done. This sis what If the curve is congenital, meaning > > > there are defects in the bones of the spine, a brace is usually > > not > > > prescribed. We have been told that casting or bracing is only > > used > > > for idiopathic scoliosis not for congenital. It must be very > > > frustrating to be in your position. I can see that it weighs > > > heavily on your heart to do everything you can to help . > > > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2005 Report Share Posted December 30, 2005 Thanks! I apologize, that I may have missed a message with all this info. I do hope you weren't offended. Gail Re: Jackie Naw, I am not Jessie's grandma. Come Feb. 14th I will be Jessie's step mother. I love him like my own. Nice to hear from you Gail. As far as I know they where putting him out for the CT Scan. Today we are going to try and see if Jessie really had the appointment yesterday and try to see if he really has one next wednesday. Sometimes, if you can get the right receptionist, they will give out that information. Unfortunately, the situation is worse than just that. She also claims to move all the time. Now isn't allowed to phone her again. Hopefully that won't last to awful long. In 16 days we will be in Arkansas. Then we will personally go to Arkansas Childrens Hospital. Thank you very much Gail for offering support. I am surely going to need it specially if what we are told by Leigh Ann is true. Jackie > >> > Hi Jackie,> > I have read some of the posts, but may have missed some... I am > not > > sure of the exact situation, but I can tell you that our dd has > > birth defects and congenital scoliosis. We were actually going to > > adopt 6 years ago, got all the paper work and tests and were on a > > waiting list to adopt when we were surprised by a pregnancy, (and > > then another). My husband and myself have discussed many times > how > > if we would have adopted our daughter we would have been saying > that > > her birth mother must have done drugs or not taken the proper care > > of herself, in order for our daughter to have the birth defects. > I > > took prenatal vitamins, thought I took pretty good care of myself, > > yet the feeling of guilt I still have is always nagging at me. > My > > point is that this can happen to anyone, it does not necessarily > > mean that the birth mother has done something wrong. I don't know > > the facts of your situation, but Curve progression usually happens > > at a growth spurt, not usually as a function of what someone has > or > > has not done. This sis what If the curve is congenital, meaning > > there are defects in the bones of the spine, a brace is usually > not > > prescribed. We have been told that casting or bracing is only > used > > for idiopathic scoliosis not for congenital. It must be very > > frustrating to be in your position. I can see that it weighs > > heavily on your heart to do everything you can to help . > > > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 no I REFUSE to take Steroids, but I have had the sarcoid membrane removed from my retina twice!!! so far it looks like this time it might NOT grow back,, Im hoping that is the case,, the surgery isnt so bad but the recovery drives me nuts, cuz the sutures in the white part of your eye itches like mad and you cant scratch it,, lolus2china2 <us2china2@...> wrote: Have you been treated for sarcoidosis? If so, how are you now? What I found said more than half of those treated have complete resolution. Sorry for you girl! But many trails will make Jackie one tough cookie.My best and please let me know,ChrisEat, drink, and be !Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 <<<<<Major Shudder>>>>> EYE SURGERY! uhhhh I'll just be over here... I hope you never have another problem for the rest of your life!Jackie on <redjaxjm@...> wrote: no I REFUSE to take Steroids, but I have had the sarcoid membrane removed from my retina twice!!! so far it looks like this time it might NOT grow back,, Im hoping that is the case,, the surgery isnt so bad but the recovery drives me nuts, cuz the sutures in the white part of your eye itches like mad and you cant scratch it,, lolus2china2 <us2china2@...> wrote: Have you been treated for sarcoidosis? If so, how are you now? What I found said more than half of those treated have complete resolution. Sorry for you girl! But many trails will make Jackie one tough cookie.My best and please let me know,ChrisEat, drink, and be !Jackie Brings words and photos together (easily) with PhotoMail - it's free and works with . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 hehe,, shudder huh?? it wasnt bad,, they gave me conscious sedation for a min to put me way down under so they could put my eye to sleep and put that gawdawful apparatus into my eye,, but once they do that, you have NO vision in that eye,, cant see a thing,, its really weird.. but when they are done, you barely have time to even get dressed and they are sending you home,,,Hunter <us2china2@...> wrote: <<<<<Major Shudder>>>>> EYE SURGERY! uhhhh I'll just be over here... I hope you never have another problem for the rest of your life!Jackie on <redjaxjm@...> wrote: no I REFUSE to take Steroids, but I have had the sarcoid membrane removed from my retina twice!!! so far it looks like this time it might NOT grow back,, Im hoping that is the case,, the surgery isnt so bad but the recovery drives me nuts, cuz the sutures in the white part of your eye itches like mad and you cant scratch it,, lolus2china2 <us2china2@...> wrote: Have you been treated for sarcoidosis? If so, how are you now? What I found said more than half of those treated have complete resolution. Sorry for you girl! But many trails will make Jackie one tough cookie.My best and please let me know,ChrisEat, drink, and be !Jackie Brings words and photos together (easily) withPhotoMail - it's free and works with . Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 hi hon,, things are busy here but all is well,, I hope you are ok too,, I just emailed you this morning,, Ill talk with you soon,, sodapop_4you <sodapop_4you@...> wrote: Miss you Jackie..Hope all is wellAnnitaJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 Hiya Jackie, Glad to say hello to you again from Highland Park. The town latest news is that they are planning to build a new " Y " (I hope you where it is?) along with a high rise condo's on the banks of the Raritan River. Now Highland Park has a new Quizno's sub take away. I'm doing real good after one year of activation and have been hearing all kinds of sounds (some not to be heard - LOL) coming from folks and things with all kinds of sizes and shapes (LOL). Jackie, you don't destroy a stinkbug to He** but kill it He**, so that it RIP's (Return IF Possible). Looking back one year post activation and the time I spent, nagging folks like you all since 2004 for information on CI from this forum, really makes me wonder.oh really!! was I deaf? You know that I was deaf of both the ears and spent two years in absolute silence, was so desperate for a CI and even almost skied to NYC for my surgery following a blizzard and the great nor'easter. I am engulfed in a complete world of sounds and He** what a noisy world this is. I spend a lot of time sitting on a bench by the river at son Park (where you spent your high school years 'whispering nothing' to Jeff) and hear the river gurgling, an occasional fish being plucked out by the migratory birds there. I can hear the " plop, plop " of the flamingoes walking in water, the wooshing sounds of wind blowing through the tree leaves. Sounds of traffic from a distant Route 18 and Route 1. These days I'm trying not to be an eavesdropper, but can't help the habit, since I am training to hear anew from as far as 25 feet away. I hear so many new sounds each day it is CI Moment every day and time. The college students (girls) near my apartment are really loud when they speak goody nothings to their boy friends using their cell phone. I hear my son's wrist watch beeping at a distance of 20 feet away and also the neighbor's phone ringing. Each day, I can easily determine, whose car is coming in from the sounds of their engines into our apartment parking lot. I can hear birds chirping, despite being deaf in my right ear and only the left ear helps, that has the CI on. My last audio report says that I was hearing at 5 to 10dB from 120 dB. Speech comprehension is at 98% and 88% with white noise. I have also noticed that I am able to hear conversation of a caller on a cell phone and phone, when I am not using it, meaning suppose, if you are speaking on a phone, I am able to hear the person on the other end of the line, while standing about 5 feet away from you. I am stunned and shocked with my CI experience and performance. My Audie team and Surgeon at NYC are also equally surprised. Recently, I was doing medicals for Life Insurance and the Dr, who was asking me questions from a form, just blindly went ahead and checked the " No hearing Defects " box. I had to remind him " Hey Doc, I am deaf as a stone, then he asked me again, then Doc how do you hear so well? Do you read my lips? I replied, no Doc, I hearing using this " gizmo " called the CI and this really shocked him to " He** " as he said that many of his patients who have a CI are really finding it hard. God! I really pray that each an every one having a CI hears well and does well. This has been my fervent prayers for all, CI'ers, candidates, contemplators etc. Hope you are doing well, " stereographically " and are content with the performance of both the CI's. You are really bionic now, with two different brands on each ear, so what is the quality assurance on these two? Ok then let me end this very " short mail " . Ravi _____ Quote Link to comment Share on other sites More sharing options...
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