Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Hi all, it's me, . I have been away too long! I miss this group very much. But, I am still working a demanding job from home and being a Mom so I can't get as involved as I used to. I still read your posts. But I must admit, I can't keep up there are so many new members! I wish you all success in your journeys with this fight. There are many of us (including me) who were given very bad prognoses and then went on to have a healthy child. So hang in there. If there is any advice I could give, is to go to an A list doc if you have moderate to severe Ashermans. And joining this group is the best thing you ever did. There is no better way to learn about this affliction and its treatment and to find hope. This group was always so good to give me hope throughout all the disappointments I had in almost 2 years of this struggle. After my first very poor prognosis, I switched to Dr. Indman and I owe my daughter to him. And guess what this wonderful man just did? He sent me flowers for my Birthday! He wanted to thank me (can you believe this?) for all the wonderful Ashermans patients I have sent his way. All I can think of is how will I thank him and then he goes and sends me flowers. Imagine! What a wonderful man! Corinna, it was wonderful to talk to you by phone the other day. You truly are an ambassador for Europe. I am awaiting to hear of Lesia's appointment. I hope it went better then anticipated. Indman's video. Well now that I have an excuse to call Dr. Indman to thank him for the flowers, I will ask him about the video he had taken during my surgery. Everyone, I feel all your disappointments and your fear and I feel all your joy when the miracles happen. I am still here...I just read rather then engage right now. I would love to get back into helping, but I simply can't right now. Take care and I wish you all good luck and strength from the deepest part of my heart. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Hi all, it's me, . I have been away too long! I miss this group very much. But, I am still working a demanding job from home and being a Mom so I can't get as involved as I used to. I still read your posts. But I must admit, I can't keep up there are so many new members! I wish you all success in your journeys with this fight. There are many of us (including me) who were given very bad prognoses and then went on to have a healthy child. So hang in there. If there is any advice I could give, is to go to an A list doc if you have moderate to severe Ashermans. And joining this group is the best thing you ever did. There is no better way to learn about this affliction and its treatment and to find hope. This group was always so good to give me hope throughout all the disappointments I had in almost 2 years of this struggle. After my first very poor prognosis, I switched to Dr. Indman and I owe my daughter to him. And guess what this wonderful man just did? He sent me flowers for my Birthday! He wanted to thank me (can you believe this?) for all the wonderful Ashermans patients I have sent his way. All I can think of is how will I thank him and then he goes and sends me flowers. Imagine! What a wonderful man! Corinna, it was wonderful to talk to you by phone the other day. You truly are an ambassador for Europe. I am awaiting to hear of Lesia's appointment. I hope it went better then anticipated. Indman's video. Well now that I have an excuse to call Dr. Indman to thank him for the flowers, I will ask him about the video he had taken during my surgery. Everyone, I feel all your disappointments and your fear and I feel all your joy when the miracles happen. I am still here...I just read rather then engage right now. I would love to get back into helping, but I simply can't right now. Take care and I wish you all good luck and strength from the deepest part of my heart. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2002 Report Share Posted October 24, 2002 Hi all, it's me, . I have been away too long! I miss this group very much. But, I am still working a demanding job from home and being a Mom so I can't get as involved as I used to. I still read your posts. But I must admit, I can't keep up there are so many new members! I wish you all success in your journeys with this fight. There are many of us (including me) who were given very bad prognoses and then went on to have a healthy child. So hang in there. If there is any advice I could give, is to go to an A list doc if you have moderate to severe Ashermans. And joining this group is the best thing you ever did. There is no better way to learn about this affliction and its treatment and to find hope. This group was always so good to give me hope throughout all the disappointments I had in almost 2 years of this struggle. After my first very poor prognosis, I switched to Dr. Indman and I owe my daughter to him. And guess what this wonderful man just did? He sent me flowers for my Birthday! He wanted to thank me (can you believe this?) for all the wonderful Ashermans patients I have sent his way. All I can think of is how will I thank him and then he goes and sends me flowers. Imagine! What a wonderful man! Corinna, it was wonderful to talk to you by phone the other day. You truly are an ambassador for Europe. I am awaiting to hear of Lesia's appointment. I hope it went better then anticipated. Indman's video. Well now that I have an excuse to call Dr. Indman to thank him for the flowers, I will ask him about the video he had taken during my surgery. Everyone, I feel all your disappointments and your fear and I feel all your joy when the miracles happen. I am still here...I just read rather then engage right now. I would love to get back into helping, but I simply can't right now. Take care and I wish you all good luck and strength from the deepest part of my heart. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi Steph, Welcome to the group! The pain that you are having sounds like a salivary gland. When I had this problem after my RAI, I used warm compresses (I actually went between the hot water bottle and the heating pad), but you could also use warm washclothes and massage it gently to get the glands to open. I hope this helps! Good luck to you and stick with this group! They are WONDERFUL people and they are very helpful in any way they can!! Take care, land *Currently waiting for thyrogen to get to Endo's office to begin the LID and go for my first WBS *Pathology report for biopsy that was done on knee--benign!!! YEAH!! *Thyroid Ultrasound (June 01) 6 nodules found; 3 on right and 3 on left *Uptake Scan (end June 01) nodules found to be solid *FNB (October 01) suspicious for cancer *TT (Dec 01) papillary cancer, spreading to lymph nodes in neck and muscle *RAI (Jan 02) *Levoxyl-175mcg (Mon.-Friday); 200 mcg (Sat. & Sun.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi Steph, Welcome to the group! The pain that you are having sounds like a salivary gland. When I had this problem after my RAI, I used warm compresses (I actually went between the hot water bottle and the heating pad), but you could also use warm washclothes and massage it gently to get the glands to open. I hope this helps! Good luck to you and stick with this group! They are WONDERFUL people and they are very helpful in any way they can!! Take care, land *Currently waiting for thyrogen to get to Endo's office to begin the LID and go for my first WBS *Pathology report for biopsy that was done on knee--benign!!! YEAH!! *Thyroid Ultrasound (June 01) 6 nodules found; 3 on right and 3 on left *Uptake Scan (end June 01) nodules found to be solid *FNB (October 01) suspicious for cancer *TT (Dec 01) papillary cancer, spreading to lymph nodes in neck and muscle *RAI (Jan 02) *Levoxyl-175mcg (Mon.-Friday); 200 mcg (Sat. & Sun.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 Hi Steph, Welcome to the group! The pain that you are having sounds like a salivary gland. When I had this problem after my RAI, I used warm compresses (I actually went between the hot water bottle and the heating pad), but you could also use warm washclothes and massage it gently to get the glands to open. I hope this helps! Good luck to you and stick with this group! They are WONDERFUL people and they are very helpful in any way they can!! Take care, land *Currently waiting for thyrogen to get to Endo's office to begin the LID and go for my first WBS *Pathology report for biopsy that was done on knee--benign!!! YEAH!! *Thyroid Ultrasound (June 01) 6 nodules found; 3 on right and 3 on left *Uptake Scan (end June 01) nodules found to be solid *FNB (October 01) suspicious for cancer *TT (Dec 01) papillary cancer, spreading to lymph nodes in neck and muscle *RAI (Jan 02) *Levoxyl-175mcg (Mon.-Friday); 200 mcg (Sat. & Sun.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 > Hello everyone, I am new here. Also new w/ thyroid cancer. I > have a quick question, I had RAI on 12-17-02, and now for the past 3 > days I have this pain just under my jawbone, in my throat. It is > very painful!!! I believe that it may be a salivary gland....any > thoughts? > > Steph Hi, Steph - and welcome! Sounds like it may be salivary gland problems. Definitely no fun :-( Here are some links to posts that may be of help: salivary gland solutions (includes link to members' suggestions) http://groups.yahoo.com/group/Thyca/message/16624 Nick's collection of doctors' letters http://groups.yahoo.com/group/Thyca/message/13119 Sharon's doctor's suggestions http://groups.yahoo.com/group/Thyca/message/17961 's plan of action to ease her salivary gland woes http://groups.yahoo.com/group/Thyca/message/21389 Cheers, Alisa Currently - 140mcg Levoxyl 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: WBS (2 mCi) and 100 mCi RAI --- 6/6/2002: WBS - No mets 12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!! Age: 49 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 LID thoughts, tips, ideas - http://groups.yahoo.com/group/Thyca/message/25430 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2003 Report Share Posted January 9, 2003 > Hello everyone, I am new here. Also new w/ thyroid cancer. I > have a quick question, I had RAI on 12-17-02, and now for the past 3 > days I have this pain just under my jawbone, in my throat. It is > very painful!!! I believe that it may be a salivary gland....any > thoughts? > > Steph Hi, Steph - and welcome! Sounds like it may be salivary gland problems. Definitely no fun :-( Here are some links to posts that may be of help: salivary gland solutions (includes link to members' suggestions) http://groups.yahoo.com/group/Thyca/message/16624 Nick's collection of doctors' letters http://groups.yahoo.com/group/Thyca/message/13119 Sharon's doctor's suggestions http://groups.yahoo.com/group/Thyca/message/17961 's plan of action to ease her salivary gland woes http://groups.yahoo.com/group/Thyca/message/21389 Cheers, Alisa Currently - 140mcg Levoxyl 2/15/2002: Nodule found 2/27/2002: FNA 3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!! 4/9/2002: TT - Stage 2 pap 2.5 x 2 x 1.6 cm nodule, dx Hashimotos 5/28/2002: WBS (2 mCi) and 100 mCi RAI --- 6/6/2002: WBS - No mets 12/16/02: WBS (5 mCi): clean scan - no thyroid tissue in body!!! Age: 49 -- Location: near Seattle WA --- Check out my posts: Radioactive Girl - http://groups.yahoo.com/group/Thyca/message/19472 My LID - http://groups.yahoo.com/group/Thyca/message/15872 My RAI - http://groups.yahoo.com/group/Thyca/message/15873 LID thoughts, tips, ideas - http://groups.yahoo.com/group/Thyca/message/25430 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 > Hi Ladies, > > I just joined this post today after hearing of it on another site. > I'm a 24 year old female and am actually at home recovering from > laparascopy for endometriosis right now. I wanted to reach out for > some input from some who are perhaps more experienced in this area > than I. I went to my doctor this summer for pelvic pain. I'll spare > you the long boring details but after tons of tests, both GI and > female related it was determined likely endoemtriosis, and also > during all the testing a septate uterus was found. That was not the > reason for the pain, as I'm told that a septate in itself would not > cause any pain. Hello Keli, Glad you found us. Actually, a septum can be a cause for menstrual pain. And since there is a correlation between müllerian anomalies and endometriosis, the septum might possibly contribute to the endo. Some theories about retrograde menstruation hold up fairly well, and septa tend to cause menstrual blood to back up into the tubes more so than in an open uterus. >So anyways, just this past week I had surgery to > remove the endometriosis. My doctor debated with the idea to remove > the septate at the time as well. However, I am not currently trying > to get pregnant, nor have I ever before, and since we don't know that > septum will automatically be a problem for me, he decided that for > now it was probably in my best interest to leave it alone. You can't go wrong leaving well enough alone, especially since you do not want to TTC for now. How long is your septum, by the way? The ones that come all the way down the uterus cause the most trouble, including losses later in pregnancy, or prematurity. Shorter septa tend not to cause as much loss. Aside from their association with increased incidence of early miscarriage, septa do not cause infertility per se, but they do have the poorest pregnancy outcome compared to other uterine anomalies. The consensus seems to be that it is better to get a septum out of the way if it is large, or if infertility treatments also need to be done, to minimize the risk of loss. And if you get the septum taken care of now, you'll have the recuperation and follow-up testing (and repeat resection, if necessary) out of the way ahead of time. Believe me, it is crazy- making to have to wait before getting the green light :-) Just trying to give you a pro to go along with the con. > He sought > the advice of many reproductive specialists in this area and nobody > seemed to really have a 100% sure answer as to what the right thing > was to do. No one will ever have an absolutely certain answer. My own decision was made for me because I had multiple losses and a full-length septum (and other infertility factors). Took me four years to get our baby boy. Started TTC when I was 33 and will be 40 before I can try for a second baby--if my FSH level isn't shot by then. > It seems that my chances are slightly > above 50% right now, and if they would have removed it now there was > always the risk of further damage. Just wondering if anyone out > there has had any situation similiar and could offer me some > insight. I think I'm just wanting reassurance that I did the right > thing for the time being. Thanks to all! Let me just say that risk of decreasing fertility by having a septum out is minimal. Sorry I can't reassure you more. I personally would choose to have the septum out (unless it was tiny) and TTC right now while fertility was high and endometriosis has not had a chance to progress. I should also say that my mother and her three sisters all had endo and only my mother was blessed with normal fertility. The other three had extreme difficulty. Hope you get plenty of opinions here and much comfort and good information. Beth SU, resected x 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 > Hi Ladies, > > I just joined this post today after hearing of it on another site. > I'm a 24 year old female and am actually at home recovering from > laparascopy for endometriosis right now. I wanted to reach out for > some input from some who are perhaps more experienced in this area > than I. I went to my doctor this summer for pelvic pain. I'll spare > you the long boring details but after tons of tests, both GI and > female related it was determined likely endoemtriosis, and also > during all the testing a septate uterus was found. That was not the > reason for the pain, as I'm told that a septate in itself would not > cause any pain. Hello Keli, Glad you found us. Actually, a septum can be a cause for menstrual pain. And since there is a correlation between müllerian anomalies and endometriosis, the septum might possibly contribute to the endo. Some theories about retrograde menstruation hold up fairly well, and septa tend to cause menstrual blood to back up into the tubes more so than in an open uterus. >So anyways, just this past week I had surgery to > remove the endometriosis. My doctor debated with the idea to remove > the septate at the time as well. However, I am not currently trying > to get pregnant, nor have I ever before, and since we don't know that > septum will automatically be a problem for me, he decided that for > now it was probably in my best interest to leave it alone. You can't go wrong leaving well enough alone, especially since you do not want to TTC for now. How long is your septum, by the way? The ones that come all the way down the uterus cause the most trouble, including losses later in pregnancy, or prematurity. Shorter septa tend not to cause as much loss. Aside from their association with increased incidence of early miscarriage, septa do not cause infertility per se, but they do have the poorest pregnancy outcome compared to other uterine anomalies. The consensus seems to be that it is better to get a septum out of the way if it is large, or if infertility treatments also need to be done, to minimize the risk of loss. And if you get the septum taken care of now, you'll have the recuperation and follow-up testing (and repeat resection, if necessary) out of the way ahead of time. Believe me, it is crazy- making to have to wait before getting the green light :-) Just trying to give you a pro to go along with the con. > He sought > the advice of many reproductive specialists in this area and nobody > seemed to really have a 100% sure answer as to what the right thing > was to do. No one will ever have an absolutely certain answer. My own decision was made for me because I had multiple losses and a full-length septum (and other infertility factors). Took me four years to get our baby boy. Started TTC when I was 33 and will be 40 before I can try for a second baby--if my FSH level isn't shot by then. > It seems that my chances are slightly > above 50% right now, and if they would have removed it now there was > always the risk of further damage. Just wondering if anyone out > there has had any situation similiar and could offer me some > insight. I think I'm just wanting reassurance that I did the right > thing for the time being. Thanks to all! Let me just say that risk of decreasing fertility by having a septum out is minimal. Sorry I can't reassure you more. I personally would choose to have the septum out (unless it was tiny) and TTC right now while fertility was high and endometriosis has not had a chance to progress. I should also say that my mother and her three sisters all had endo and only my mother was blessed with normal fertility. The other three had extreme difficulty. Hope you get plenty of opinions here and much comfort and good information. Beth SU, resected x 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2003 Report Share Posted December 23, 2003 > Hi Ladies, > > I just joined this post today after hearing of it on another site. > I'm a 24 year old female and am actually at home recovering from > laparascopy for endometriosis right now. I wanted to reach out for > some input from some who are perhaps more experienced in this area > than I. I went to my doctor this summer for pelvic pain. I'll spare > you the long boring details but after tons of tests, both GI and > female related it was determined likely endoemtriosis, and also > during all the testing a septate uterus was found. That was not the > reason for the pain, as I'm told that a septate in itself would not > cause any pain. Hello Keli, Glad you found us. Actually, a septum can be a cause for menstrual pain. And since there is a correlation between müllerian anomalies and endometriosis, the septum might possibly contribute to the endo. Some theories about retrograde menstruation hold up fairly well, and septa tend to cause menstrual blood to back up into the tubes more so than in an open uterus. >So anyways, just this past week I had surgery to > remove the endometriosis. My doctor debated with the idea to remove > the septate at the time as well. However, I am not currently trying > to get pregnant, nor have I ever before, and since we don't know that > septum will automatically be a problem for me, he decided that for > now it was probably in my best interest to leave it alone. You can't go wrong leaving well enough alone, especially since you do not want to TTC for now. How long is your septum, by the way? The ones that come all the way down the uterus cause the most trouble, including losses later in pregnancy, or prematurity. Shorter septa tend not to cause as much loss. Aside from their association with increased incidence of early miscarriage, septa do not cause infertility per se, but they do have the poorest pregnancy outcome compared to other uterine anomalies. The consensus seems to be that it is better to get a septum out of the way if it is large, or if infertility treatments also need to be done, to minimize the risk of loss. And if you get the septum taken care of now, you'll have the recuperation and follow-up testing (and repeat resection, if necessary) out of the way ahead of time. Believe me, it is crazy- making to have to wait before getting the green light :-) Just trying to give you a pro to go along with the con. > He sought > the advice of many reproductive specialists in this area and nobody > seemed to really have a 100% sure answer as to what the right thing > was to do. No one will ever have an absolutely certain answer. My own decision was made for me because I had multiple losses and a full-length septum (and other infertility factors). Took me four years to get our baby boy. Started TTC when I was 33 and will be 40 before I can try for a second baby--if my FSH level isn't shot by then. > It seems that my chances are slightly > above 50% right now, and if they would have removed it now there was > always the risk of further damage. Just wondering if anyone out > there has had any situation similiar and could offer me some > insight. I think I'm just wanting reassurance that I did the right > thing for the time being. Thanks to all! Let me just say that risk of decreasing fertility by having a septum out is minimal. Sorry I can't reassure you more. I personally would choose to have the septum out (unless it was tiny) and TTC right now while fertility was high and endometriosis has not had a chance to progress. I should also say that my mother and her three sisters all had endo and only my mother was blessed with normal fertility. The other three had extreme difficulty. Hope you get plenty of opinions here and much comfort and good information. Beth SU, resected x 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 I just wanted to add my thoughts also. I know that when Rob first lost his hearing (almost 5 yrs. old), I noticed him acting like that in a lot of situations. He would seem overstimulated, hyper, distracted, and bored with what was going on around him. I had several doctors tell me that he had ADHD and one said he was bipolar. They NEVER took into account that hearing impaired children are distracted easier. He is a lot better now than he was then. (He also has had many tests ran that have excluded bipolar disorder and ADHD. He is normal!!) I know how frustrating that is for you, the parent and I can imagine how frustrated the child is also. I would ask the school to place him closer to the speakers or the FM system that was mentioned is an excellent idea also. I know that my sons school sometimes forgets to place him where he can benefit most when they are in the auditorium. I just simply ask them to move him to a better position. Anyway, I hope the little input I have helps.. Deborah Mom of -10 severe/profound hearing loss- CI user Marissa-4 Reagan-3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 I just wanted to add my thoughts also. I know that when Rob first lost his hearing (almost 5 yrs. old), I noticed him acting like that in a lot of situations. He would seem overstimulated, hyper, distracted, and bored with what was going on around him. I had several doctors tell me that he had ADHD and one said he was bipolar. They NEVER took into account that hearing impaired children are distracted easier. He is a lot better now than he was then. (He also has had many tests ran that have excluded bipolar disorder and ADHD. He is normal!!) I know how frustrating that is for you, the parent and I can imagine how frustrated the child is also. I would ask the school to place him closer to the speakers or the FM system that was mentioned is an excellent idea also. I know that my sons school sometimes forgets to place him where he can benefit most when they are in the auditorium. I just simply ask them to move him to a better position. Anyway, I hope the little input I have helps.. Deborah Mom of -10 severe/profound hearing loss- CI user Marissa-4 Reagan-3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 I just wanted to add my thoughts also. I know that when Rob first lost his hearing (almost 5 yrs. old), I noticed him acting like that in a lot of situations. He would seem overstimulated, hyper, distracted, and bored with what was going on around him. I had several doctors tell me that he had ADHD and one said he was bipolar. They NEVER took into account that hearing impaired children are distracted easier. He is a lot better now than he was then. (He also has had many tests ran that have excluded bipolar disorder and ADHD. He is normal!!) I know how frustrating that is for you, the parent and I can imagine how frustrated the child is also. I would ask the school to place him closer to the speakers or the FM system that was mentioned is an excellent idea also. I know that my sons school sometimes forgets to place him where he can benefit most when they are in the auditorium. I just simply ask them to move him to a better position. Anyway, I hope the little input I have helps.. Deborah Mom of -10 severe/profound hearing loss- CI user Marissa-4 Reagan-3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 , My name is also and I think I have the equivilant of your daughter in boy form. Your description of your daughter matches him to a T. My isn't profoundly deaf but until 8 months ago had severe auditory processing and didn't understand anything we said to him. He also didn't respond to sign and still doesn't take to it well. He has been doing so good though learning things. We believe he has a mild low frequency loss. He is deffinately the biggest challange in my life. I also have another son who is physically disabled and we are going through a really hard time with him right now regarding surgery, and while has also had 3 surgeries (major ones to reconstruct his head) I have to say I've had my share of pain aside from . is so challanging, he is overly active and so strong willed, he won't do anything unless he wants to. But as you said he is so so sweet and he squeezes my cheeks with this loving look and kisses my cheek and he does this all the time and I just melt. I think that his stubborn attitude will actually at some point bennefit him. He is 3 1/2 years old and just such a challange and a joy at the same time. It sounds like you really understand what I mean. He also sais I love you like that kind of, he very rarely will say I-u-oo. Anyway welcome to the group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 , I lived in Little Rock Arkansas when we learned that was deaf. She was almost 3. We used Arkansas Children's Hospital for her implant (april 2000) and A/V for 3 years. We really struggled in AR. I was on the board for AGBell's local chapter AAHIC. Please tell , Gayle, Theresa, , Shaun and the rest " says Hello and is doing GREAT " . The school district in LR wasn't willing to start an oral classroom. I even worked with Hastings to try and get the Arkansas School for the Deaf to include an oral approach that would work for . We moved to St. Louis last year for to attend Moog Center for Deaf Education's Oral School. When she started at Moog she had very little expressive language (she was 6 and talked like an 18 month old) and a bit more receptive (3 years). She has made incredible gains in the first year. She made almost 2 years gain in expressive when tested in April and now I'll bet another year in the past 6 months. She is reading and talking and singing (not well but she sure likes to plug into the CD player and try). Please keep your expectations high for your Leyla Jo. She sounds like our daughter. I remember how alone I would feel and how much connecting with others through AAHIC and online (cicircle and Listen-up) helped. If ever I can help please let me know I also worked with the state (Millie) on information for parents. Do you know Crumpler? Tell her a special Hello from me. Please feel free to contact me directly. Mom to 12, 7 (n24 4/00) and 4 Hello everyone Hi there everybody, I'm the new person so I thought I'd greet everyone and tell you all a little about myself. My name is , and I have a beautiful, sweet, loving (bossy, strong-willed, wild-as-a-march-hare) 2 year old little girl named Leyla Jo who is profoundly deaf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 , I lived in Little Rock Arkansas when we learned that was deaf. She was almost 3. We used Arkansas Children's Hospital for her implant (april 2000) and A/V for 3 years. We really struggled in AR. I was on the board for AGBell's local chapter AAHIC. Please tell , Gayle, Theresa, , Shaun and the rest " says Hello and is doing GREAT " . The school district in LR wasn't willing to start an oral classroom. I even worked with Hastings to try and get the Arkansas School for the Deaf to include an oral approach that would work for . We moved to St. Louis last year for to attend Moog Center for Deaf Education's Oral School. When she started at Moog she had very little expressive language (she was 6 and talked like an 18 month old) and a bit more receptive (3 years). She has made incredible gains in the first year. She made almost 2 years gain in expressive when tested in April and now I'll bet another year in the past 6 months. She is reading and talking and singing (not well but she sure likes to plug into the CD player and try). Please keep your expectations high for your Leyla Jo. She sounds like our daughter. I remember how alone I would feel and how much connecting with others through AAHIC and online (cicircle and Listen-up) helped. If ever I can help please let me know I also worked with the state (Millie) on information for parents. Do you know Crumpler? Tell her a special Hello from me. Please feel free to contact me directly. Mom to 12, 7 (n24 4/00) and 4 Hello everyone Hi there everybody, I'm the new person so I thought I'd greet everyone and tell you all a little about myself. My name is , and I have a beautiful, sweet, loving (bossy, strong-willed, wild-as-a-march-hare) 2 year old little girl named Leyla Jo who is profoundly deaf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 , I lived in Little Rock Arkansas when we learned that was deaf. She was almost 3. We used Arkansas Children's Hospital for her implant (april 2000) and A/V for 3 years. We really struggled in AR. I was on the board for AGBell's local chapter AAHIC. Please tell , Gayle, Theresa, , Shaun and the rest " says Hello and is doing GREAT " . The school district in LR wasn't willing to start an oral classroom. I even worked with Hastings to try and get the Arkansas School for the Deaf to include an oral approach that would work for . We moved to St. Louis last year for to attend Moog Center for Deaf Education's Oral School. When she started at Moog she had very little expressive language (she was 6 and talked like an 18 month old) and a bit more receptive (3 years). She has made incredible gains in the first year. She made almost 2 years gain in expressive when tested in April and now I'll bet another year in the past 6 months. She is reading and talking and singing (not well but she sure likes to plug into the CD player and try). Please keep your expectations high for your Leyla Jo. She sounds like our daughter. I remember how alone I would feel and how much connecting with others through AAHIC and online (cicircle and Listen-up) helped. If ever I can help please let me know I also worked with the state (Millie) on information for parents. Do you know Crumpler? Tell her a special Hello from me. Please feel free to contact me directly. Mom to 12, 7 (n24 4/00) and 4 Hello everyone Hi there everybody, I'm the new person so I thought I'd greet everyone and tell you all a little about myself. My name is , and I have a beautiful, sweet, loving (bossy, strong-willed, wild-as-a-march-hare) 2 year old little girl named Leyla Jo who is profoundly deaf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 , doesn't get mad at me for trying to correct him, only because we aren't at the point yet where we can correct him. He doesn't understand most of what we say. He is repeating more lately. I don't know if you read the post where I said he repeated " I know " and when I told my husband " see " after he said it, he started saying " I know see " we were laughing so hard. We are really excited about all this, but the fact remains that he doesn't understand most of what he is saying. He is basically at the repeat when he hears stuff but not really understand what it means. I've been working with putting meaning to things but it's hard. So until he understands what he is saying there's not a whole lot we can do to correct how he says it. When he is really focused I will sit in front of him and get him to watch me say it and he will try to repeat, but the moments where he is that focused are few and far between. Like I said before he only does anything when " he " wants to. We are thrilled that he knows his alphabet though. He only knows the upper case letters though. My older son brought home a book with the letter A on it. There is a upper case and lower case. was saying " A " and pointing to it. I pointed to the lower case to try to show him that is A too he just took my hand moved it to the big A and said " A " . He was trying to correct me. Anyway we have a lot of ground to make up and it is slow going, but at least it's going. My older son does have a speech delay and he does get frustrated when I correct him. If I repeat something properly he says " yes " and goes on. When I tell him to say it he just sais " no " . Sometimes I make him other times I just let him have a rest. Anyway I do understand the limiting the sign so she learns how to listen better. I told our ST that she needs to work on sign and speech seperately and speech reading seperately as well. Anyway we are constantly trying to figure out how to get him to cooperate. But they are so precious. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 , doesn't get mad at me for trying to correct him, only because we aren't at the point yet where we can correct him. He doesn't understand most of what we say. He is repeating more lately. I don't know if you read the post where I said he repeated " I know " and when I told my husband " see " after he said it, he started saying " I know see " we were laughing so hard. We are really excited about all this, but the fact remains that he doesn't understand most of what he is saying. He is basically at the repeat when he hears stuff but not really understand what it means. I've been working with putting meaning to things but it's hard. So until he understands what he is saying there's not a whole lot we can do to correct how he says it. When he is really focused I will sit in front of him and get him to watch me say it and he will try to repeat, but the moments where he is that focused are few and far between. Like I said before he only does anything when " he " wants to. We are thrilled that he knows his alphabet though. He only knows the upper case letters though. My older son brought home a book with the letter A on it. There is a upper case and lower case. was saying " A " and pointing to it. I pointed to the lower case to try to show him that is A too he just took my hand moved it to the big A and said " A " . He was trying to correct me. Anyway we have a lot of ground to make up and it is slow going, but at least it's going. My older son does have a speech delay and he does get frustrated when I correct him. If I repeat something properly he says " yes " and goes on. When I tell him to say it he just sais " no " . Sometimes I make him other times I just let him have a rest. Anyway I do understand the limiting the sign so she learns how to listen better. I told our ST that she needs to work on sign and speech seperately and speech reading seperately as well. Anyway we are constantly trying to figure out how to get him to cooperate. But they are so precious. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 , doesn't get mad at me for trying to correct him, only because we aren't at the point yet where we can correct him. He doesn't understand most of what we say. He is repeating more lately. I don't know if you read the post where I said he repeated " I know " and when I told my husband " see " after he said it, he started saying " I know see " we were laughing so hard. We are really excited about all this, but the fact remains that he doesn't understand most of what he is saying. He is basically at the repeat when he hears stuff but not really understand what it means. I've been working with putting meaning to things but it's hard. So until he understands what he is saying there's not a whole lot we can do to correct how he says it. When he is really focused I will sit in front of him and get him to watch me say it and he will try to repeat, but the moments where he is that focused are few and far between. Like I said before he only does anything when " he " wants to. We are thrilled that he knows his alphabet though. He only knows the upper case letters though. My older son brought home a book with the letter A on it. There is a upper case and lower case. was saying " A " and pointing to it. I pointed to the lower case to try to show him that is A too he just took my hand moved it to the big A and said " A " . He was trying to correct me. Anyway we have a lot of ground to make up and it is slow going, but at least it's going. My older son does have a speech delay and he does get frustrated when I correct him. If I repeat something properly he says " yes " and goes on. When I tell him to say it he just sais " no " . Sometimes I make him other times I just let him have a rest. Anyway I do understand the limiting the sign so she learns how to listen better. I told our ST that she needs to work on sign and speech seperately and speech reading seperately as well. Anyway we are constantly trying to figure out how to get him to cooperate. But they are so precious. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 --- You wrote: I think in some ways we do end up speaking their language...lol. Oh it's nice to have someone who knows what they are like. Maybe some day your daughter and my son will get married and become a royal couple...lol. --- end of quote --- I think that's so true! My younger son at one point called hot dogs " dah dahs " . Of course he can say hot dog fine and dandy now, but we still call them dah-dahs - much to his dismay! Barbara ******************************* Barbara Mellert Manager, Social Science Computing Kiewit Computing Services Dartmouth College 13A Silsby Hall; HB 6121 Hanover NH 03755 Telephone: 603/646-2877 URL: http://www.dartmouth.edu/~ssc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 --- You wrote: I think in some ways we do end up speaking their language...lol. Oh it's nice to have someone who knows what they are like. Maybe some day your daughter and my son will get married and become a royal couple...lol. --- end of quote --- I think that's so true! My younger son at one point called hot dogs " dah dahs " . Of course he can say hot dog fine and dandy now, but we still call them dah-dahs - much to his dismay! Barbara ******************************* Barbara Mellert Manager, Social Science Computing Kiewit Computing Services Dartmouth College 13A Silsby Hall; HB 6121 Hanover NH 03755 Telephone: 603/646-2877 URL: http://www.dartmouth.edu/~ssc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 --- You wrote: I think in some ways we do end up speaking their language...lol. Oh it's nice to have someone who knows what they are like. Maybe some day your daughter and my son will get married and become a royal couple...lol. --- end of quote --- I think that's so true! My younger son at one point called hot dogs " dah dahs " . Of course he can say hot dog fine and dandy now, but we still call them dah-dahs - much to his dismay! Barbara ******************************* Barbara Mellert Manager, Social Science Computing Kiewit Computing Services Dartmouth College 13A Silsby Hall; HB 6121 Hanover NH 03755 Telephone: 603/646-2877 URL: http://www.dartmouth.edu/~ssc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 I think in some ways we do end up speaking their language...lol. Oh it's nice to have someone who knows what they are like. Maybe some day your daughter and my son will get married and become a royal couple...lol. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.