Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 .. hi jen this is mary ann..i am 31 and have the same story as you...i had a lump on my right side of throat...they did a needle biopsey and it came back 50/50 of folicullar cancer so i had the surgery to remove my right side of thyroid...this was last april...when the report came back it showed i had the cancer so they went back in to take my left side out..and no cancer was found inthat side ....ohh let me tell you i had tons of blood work before hand and my thyoid levels were always normal...so this shocked all of my doctors and surgeans..every one told me it wouldnt be cancer and boom..cancer...i had 100mc of radioactive pill...i wont lie..surgery sucked and the scar sucks...i can no longer wear vneck shirts....but its not the worse thing in the world...surgery it self isnt that bad..i was out the next morning..i never had no meds ...it was like having a really bad soar throat...i was back to normal in a couple of days..i dont work but i have a baby..at the time he was 16 months old..so it was hard..and rai wasnt that bad either...i just went to the hospitol and swallowed a pill and came home ..i had to stay ina spare bedroom for 5 days...i couldnt hangout with hubby or baby...but at least i was home and not in the hospitol....they gave me a walking dose thats what it is called...because i had a small amount of cancer ..it was only in my right side and it was contained in the capsule of the thyroid..but i did have the huge lump on my throat..it looked like a golf ball.....it was hiddius..well best of luck to you..and stay in touch if you have any questions...mocello26@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 > Hi everyone. > > I was informed of this group from someone who posts on another board > that I post on. After reading some of the past posts, I am glad that > I was told about this place. > > This Thursday I will be having surgery to remove my thyroid. I had a > FNB done a few days before Xmas and the results were not able to > determine whether or not it was cancerous, only that it was > suspicious. My right thyroid is extremely enlarged, but tests have > shown that my thyroid is normal. The doctor has recommended the > removal of my whole thyroid. From there they will test to see > whether or not it is cancerous. > > I will be in the hospital overnight. This is my first surgery ever, > so I am very nervous. I am only 27, so the thought of having a scar > on my neck is a frightening thought at the moment, not to mention any > of the other complications I have been warned about. > > I would appreciate any words of wisdom I can receive about what I can > expect after my surgery. When can I return back to my normal > routine, how long it takes for the wound area to heal, etc. > > Thanks so much- > Jen Jen, Having a scar isn't the worst thing in the world. I was nervous about how it would look at first too. I am 25. Anyways, people would ask me what happened and I got sick of going through my whole cancer story so I made something up. It was fun to mess with people. This is what I said. You're never gonna believe this. My husband and I were fishing with the boys. I was trying to help and my husband was fishing in front of us. He didn't notice me and he went to cast. Well, the hook got stuck in my neck and when he pulled, it pulled right through the front of my neck. People stare at my with there mouths open in shock. It's pretty funny. Then I of course tell them what really happened. It's amazing how gullible people actually are. I hope your surgery goes well and everything turns out good. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi, Jen. I too was scared before my TT. I was 19 when dx with pap. thyca. The surgery started at 8 am and took about 7 or 8 hours. I had a neck dissection on the right side, which removed about 30 cancerous lymph nodes. My cancer is so invasive it had spread to my lungs as well. I was in the hospital after the TT for about 5 days. I got blood drawn every few hours to check calcium levels. Testing calcium indicated whether or not your parathyroids have been damaged at all. Will you be keeping your parathyroids? If not, youll have to take calcium supplements. M scar healed pretty quickly. It looks very obvious even now; my docs says its b/c I am so young that my circulation to the area was too sufficient, therefore the incision has a good amount of scar tissue around it. I had a lot of swelling after the surgery. There was a drain to take care of that on one side of my neck....that was taken out before I went home. When I awoke from surgery I had the drain, a big incision on my neck, a catheter, and circulation pumps on my legs. I recall being very grouchy. I wanted to get up and move but wasnt allowed. Having a private room was a great help. There wasnt much pain.but I was on Percoset, which also helped me sleep in that bed. I had alot of trouble sleeping or being comfortable. I was afraid to move my neck a whole lot, so I was turning my torso instead. Stretching helps with the stiffness. I didnt go on any hormone until a month later when I first met my endocrinologist. I have been pursuing this cancer dx for a couple years now. I had 3 radiations done along with all the usual scans. Most recently I found out that I will need another surgery which will give me another scar. Vitamin E is a good scar healer. Sometimes even now I get some pain in the area, so heat helps alot to relax the muscles. I had my surgery November 13 of 2000. I started at a new school, at home here in Columbus Ohio in January of 2001. I didnt work in addition to school as I do now though. Psychologically, I wont ever completely heal from all this. Cancer and its consequences have had a major impact on my life and identity. Although I'd never wish it, I have learned so much from having cancer about myself, life, people, love, anger, and death. I hope your surgery goes well and that you dont have cancer. Good luck, youre in my thoughts. in Columbus,Ohio Dx w/pap. thyca. well-diff. 11/2000, 19 yrs. old Metastases to lungs TT w/pt. neck diss. w/30 cancerous lymph nodes removed on 11/13/2000 RAI's 3/2001, 9/2001, and 7/2002 Metastases to lungs GONE by 7/2002 3 cancerous tumors left in neck, 1/2003 Second surgery needed ASAP, 3/2003? > " >Reply-To: Thyca >To: Thyca >Subject: Introduction >Date: Tue, 21 Jan 2003 02:55:18 -0000 > >Hi everyone. > >I was informed of this group from someone who posts on another board >that I post on. After reading some of the past posts, I am glad that >I was told about this place. > >This Thursday I will be having surgery to remove my thyroid. I had a >FNB done a few days before Xmas and the results were not able to >determine whether or not it was cancerous, only that it was >suspicious. My right thyroid is extremely enlarged, but tests have >shown that my thyroid is normal. The doctor has recommended the >removal of my whole thyroid. From there they will test to see >whether or not it is cancerous. > >I will be in the hospital overnight. This is my first surgery ever, >so I am very nervous. I am only 27, so the thought of having a scar >on my neck is a frightening thought at the moment, not to mention any >of the other complications I have been warned about. > >I would appreciate any words of wisdom I can receive about what I can >expect after my surgery. When can I return back to my normal >routine, how long it takes for the wound area to heal, etc. > >Thanks so much- >Jen > > > > >This e-mail support group is one of many free services of ThyCa: Thyroid >Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do >not wish to belong to this group, you may UNSUBSCRIBE by >sending a blank e-mail to: >thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi, Jen. I too was scared before my TT. I was 19 when dx with pap. thyca. The surgery started at 8 am and took about 7 or 8 hours. I had a neck dissection on the right side, which removed about 30 cancerous lymph nodes. My cancer is so invasive it had spread to my lungs as well. I was in the hospital after the TT for about 5 days. I got blood drawn every few hours to check calcium levels. Testing calcium indicated whether or not your parathyroids have been damaged at all. Will you be keeping your parathyroids? If not, youll have to take calcium supplements. M scar healed pretty quickly. It looks very obvious even now; my docs says its b/c I am so young that my circulation to the area was too sufficient, therefore the incision has a good amount of scar tissue around it. I had a lot of swelling after the surgery. There was a drain to take care of that on one side of my neck....that was taken out before I went home. When I awoke from surgery I had the drain, a big incision on my neck, a catheter, and circulation pumps on my legs. I recall being very grouchy. I wanted to get up and move but wasnt allowed. Having a private room was a great help. There wasnt much pain.but I was on Percoset, which also helped me sleep in that bed. I had alot of trouble sleeping or being comfortable. I was afraid to move my neck a whole lot, so I was turning my torso instead. Stretching helps with the stiffness. I didnt go on any hormone until a month later when I first met my endocrinologist. I have been pursuing this cancer dx for a couple years now. I had 3 radiations done along with all the usual scans. Most recently I found out that I will need another surgery which will give me another scar. Vitamin E is a good scar healer. Sometimes even now I get some pain in the area, so heat helps alot to relax the muscles. I had my surgery November 13 of 2000. I started at a new school, at home here in Columbus Ohio in January of 2001. I didnt work in addition to school as I do now though. Psychologically, I wont ever completely heal from all this. Cancer and its consequences have had a major impact on my life and identity. Although I'd never wish it, I have learned so much from having cancer about myself, life, people, love, anger, and death. I hope your surgery goes well and that you dont have cancer. Good luck, youre in my thoughts. in Columbus,Ohio Dx w/pap. thyca. well-diff. 11/2000, 19 yrs. old Metastases to lungs TT w/pt. neck diss. w/30 cancerous lymph nodes removed on 11/13/2000 RAI's 3/2001, 9/2001, and 7/2002 Metastases to lungs GONE by 7/2002 3 cancerous tumors left in neck, 1/2003 Second surgery needed ASAP, 3/2003? > " >Reply-To: Thyca >To: Thyca >Subject: Introduction >Date: Tue, 21 Jan 2003 02:55:18 -0000 > >Hi everyone. > >I was informed of this group from someone who posts on another board >that I post on. After reading some of the past posts, I am glad that >I was told about this place. > >This Thursday I will be having surgery to remove my thyroid. I had a >FNB done a few days before Xmas and the results were not able to >determine whether or not it was cancerous, only that it was >suspicious. My right thyroid is extremely enlarged, but tests have >shown that my thyroid is normal. The doctor has recommended the >removal of my whole thyroid. From there they will test to see >whether or not it is cancerous. > >I will be in the hospital overnight. This is my first surgery ever, >so I am very nervous. I am only 27, so the thought of having a scar >on my neck is a frightening thought at the moment, not to mention any >of the other complications I have been warned about. > >I would appreciate any words of wisdom I can receive about what I can >expect after my surgery. When can I return back to my normal >routine, how long it takes for the wound area to heal, etc. > >Thanks so much- >Jen > > > > >This e-mail support group is one of many free services of ThyCa: Thyroid >Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do >not wish to belong to this group, you may UNSUBSCRIBE by >sending a blank e-mail to: >thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2003 Report Share Posted January 21, 2003 Hi, Jen. I too was scared before my TT. I was 19 when dx with pap. thyca. The surgery started at 8 am and took about 7 or 8 hours. I had a neck dissection on the right side, which removed about 30 cancerous lymph nodes. My cancer is so invasive it had spread to my lungs as well. I was in the hospital after the TT for about 5 days. I got blood drawn every few hours to check calcium levels. Testing calcium indicated whether or not your parathyroids have been damaged at all. Will you be keeping your parathyroids? If not, youll have to take calcium supplements. M scar healed pretty quickly. It looks very obvious even now; my docs says its b/c I am so young that my circulation to the area was too sufficient, therefore the incision has a good amount of scar tissue around it. I had a lot of swelling after the surgery. There was a drain to take care of that on one side of my neck....that was taken out before I went home. When I awoke from surgery I had the drain, a big incision on my neck, a catheter, and circulation pumps on my legs. I recall being very grouchy. I wanted to get up and move but wasnt allowed. Having a private room was a great help. There wasnt much pain.but I was on Percoset, which also helped me sleep in that bed. I had alot of trouble sleeping or being comfortable. I was afraid to move my neck a whole lot, so I was turning my torso instead. Stretching helps with the stiffness. I didnt go on any hormone until a month later when I first met my endocrinologist. I have been pursuing this cancer dx for a couple years now. I had 3 radiations done along with all the usual scans. Most recently I found out that I will need another surgery which will give me another scar. Vitamin E is a good scar healer. Sometimes even now I get some pain in the area, so heat helps alot to relax the muscles. I had my surgery November 13 of 2000. I started at a new school, at home here in Columbus Ohio in January of 2001. I didnt work in addition to school as I do now though. Psychologically, I wont ever completely heal from all this. Cancer and its consequences have had a major impact on my life and identity. Although I'd never wish it, I have learned so much from having cancer about myself, life, people, love, anger, and death. I hope your surgery goes well and that you dont have cancer. Good luck, youre in my thoughts. in Columbus,Ohio Dx w/pap. thyca. well-diff. 11/2000, 19 yrs. old Metastases to lungs TT w/pt. neck diss. w/30 cancerous lymph nodes removed on 11/13/2000 RAI's 3/2001, 9/2001, and 7/2002 Metastases to lungs GONE by 7/2002 3 cancerous tumors left in neck, 1/2003 Second surgery needed ASAP, 3/2003? > " >Reply-To: Thyca >To: Thyca >Subject: Introduction >Date: Tue, 21 Jan 2003 02:55:18 -0000 > >Hi everyone. > >I was informed of this group from someone who posts on another board >that I post on. After reading some of the past posts, I am glad that >I was told about this place. > >This Thursday I will be having surgery to remove my thyroid. I had a >FNB done a few days before Xmas and the results were not able to >determine whether or not it was cancerous, only that it was >suspicious. My right thyroid is extremely enlarged, but tests have >shown that my thyroid is normal. The doctor has recommended the >removal of my whole thyroid. From there they will test to see >whether or not it is cancerous. > >I will be in the hospital overnight. This is my first surgery ever, >so I am very nervous. I am only 27, so the thought of having a scar >on my neck is a frightening thought at the moment, not to mention any >of the other complications I have been warned about. > >I would appreciate any words of wisdom I can receive about what I can >expect after my surgery. When can I return back to my normal >routine, how long it takes for the wound area to heal, etc. > >Thanks so much- >Jen > > > > >This e-mail support group is one of many free services of ThyCa: Thyroid >Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do >not wish to belong to this group, you may UNSUBSCRIBE by >sending a blank e-mail to: >thyca-unsubscribe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2003 Report Share Posted November 6, 2003 I'm in the NW suburbs of Chicago. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 << (she understands signing very well, just has a hard time doing it). I have a lot of questions but I will save them for another email.>> Hi Jeane, Thanks for sharing your experience. I wanted to say that my son , who was diagnosed very late, really blossomed with the TC approach as well. still has some nice residual hearing and so he is a very verbal child now. Once we mainstreamed this year (after three years in a Deaf/HOH program), chose not to sign to us when we're at school and usually not in public. We consider this his choice and only ask him to sign occasionally so he doesn't lose all he has learned. (His loss is progressive.) However, even though he doesn't usually realize it, sign is still a wonderful support mechanism for as I use it frequently to clarify something he heard incorrectly. I find myself using it across the table in crowded restaurants or at sporting events where the noise is overwhelming. also understands what is going on at church services much better on the days the interpreter is there. I think it's terrific that you are continuing to use sign to make things easier for your daughter. As a pediatric occupational therapist, I often think about the Deaf and HOH kids who don't really have the capability of signing well or at all and I hope it doesn't discourage families and teachers from using it to convey language if sign would have been their choice otherwise. I loved reading your story. Carol - mom to , mod to profound, LVAS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 << (she understands signing very well, just has a hard time doing it). I have a lot of questions but I will save them for another email.>> Hi Jeane, Thanks for sharing your experience. I wanted to say that my son , who was diagnosed very late, really blossomed with the TC approach as well. still has some nice residual hearing and so he is a very verbal child now. Once we mainstreamed this year (after three years in a Deaf/HOH program), chose not to sign to us when we're at school and usually not in public. We consider this his choice and only ask him to sign occasionally so he doesn't lose all he has learned. (His loss is progressive.) However, even though he doesn't usually realize it, sign is still a wonderful support mechanism for as I use it frequently to clarify something he heard incorrectly. I find myself using it across the table in crowded restaurants or at sporting events where the noise is overwhelming. also understands what is going on at church services much better on the days the interpreter is there. I think it's terrific that you are continuing to use sign to make things easier for your daughter. As a pediatric occupational therapist, I often think about the Deaf and HOH kids who don't really have the capability of signing well or at all and I hope it doesn't discourage families and teachers from using it to convey language if sign would have been their choice otherwise. I loved reading your story. Carol - mom to , mod to profound, LVAS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2004 Report Share Posted February 4, 2004 << (she understands signing very well, just has a hard time doing it). I have a lot of questions but I will save them for another email.>> Hi Jeane, Thanks for sharing your experience. I wanted to say that my son , who was diagnosed very late, really blossomed with the TC approach as well. still has some nice residual hearing and so he is a very verbal child now. Once we mainstreamed this year (after three years in a Deaf/HOH program), chose not to sign to us when we're at school and usually not in public. We consider this his choice and only ask him to sign occasionally so he doesn't lose all he has learned. (His loss is progressive.) However, even though he doesn't usually realize it, sign is still a wonderful support mechanism for as I use it frequently to clarify something he heard incorrectly. I find myself using it across the table in crowded restaurants or at sporting events where the noise is overwhelming. also understands what is going on at church services much better on the days the interpreter is there. I think it's terrific that you are continuing to use sign to make things easier for your daughter. As a pediatric occupational therapist, I often think about the Deaf and HOH kids who don't really have the capability of signing well or at all and I hope it doesn't discourage families and teachers from using it to convey language if sign would have been their choice otherwise. I loved reading your story. Carol - mom to , mod to profound, LVAS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Welcome back, (or should it be Jeane?), Congratulations on how well your daughter is doing! You and her dad are obviously in touch with your daughter's ways and needs and that is why she has done so well. So I send you a small round of applause with my welcome. best - Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Marie, I understand your confusion and concerns about aiding. I don't know what the answer is. We chose to use total communication with our son since he does have a lot of hearing but he doesn't understand what he hears, we felt he needed auditory input as well as sign. We use ASL and English as that is the language we speek in the house. As far as being bilingual, I don't know how well that will work it may be way to early to tell if he is going to be proficiant as an oral child, but it's never too young to start introducing him to it in my opinion. If you are hoping for him to be oral as it sounds like you are, I would suggest something on the line of cued speech or total communication. That's my personal recommendation though. The problem with AN is that there is a large distortion factor there and the sound even if a lot of it is getting through isn't very clear. Some children even with profound hearing loss develop and understand very good speech. Others don't understand anything. For this reason I recommend some form of visual communication but would suggest you not give up on oral. While there are a lot of professionals out there who still insist that teaching a child sign will slow their speech progress down there have been many studies to the contrary. They often use sign with hearing children to help them develop speech quicker and it works wonderfully in many cases and reduces frustration. I am not sure what type of sign they have where you come from, but we use ASL, there is also a type called signed exact english, or SEE. This is an exact translation of English, so if you are really wanting him to become oral that may be a good way to go. As far as bilingual, I don't know how tough that would be and seeing how you don't really know at this point how well he is going to be able to understand language it may be too early to tell. I guess my very unprofessional opinion would be to choose one spoken language and one visual language and use both all the time. Others may have a very different experience with that and I would have to say they may be right, I don't know. You have some very tough decisions ahead of you right now, your son is so young you really have no idea how well he can hear at all except in dB which really doesn't mean a whole lot when it comes to AN. I would suggest reading up on AN, as well as all the different forms of communication before choosing on one spacific type. There are so many different opinions and options out there that you really need to find out as much as you can before making a decision. What is right for me may not be right for you, and what is right for someone else may not be what's right for you, so take in all kinds of opinions here on the list as well as professionally and read as much as you can about hearing loss, choices in communication and then make your decision. Hopefully there will be others on the list who have bilingual families who can help you out with that side of things. Hang in there it may seem really overwhelming at first, the more you learn the easier it gets. Introduction Hi, I have recently joined this group and would like to briefly introduce myself and my family. My name is Marie, and we (ie my husband and I) have 2 children; Felix is 2 1/4 years old and 4 months. has been diagnosed with auditory neuropathy with a (somewhat fluctuating) severe to profound hearing loss. We live in London. While is English, I am German, and Felix grows up bilingually - something we would really like for as well, although at the moment we don't even know yet how he will learn language at all, and are not sure whether to sign, use cued speech or what else - we are still very much at the beginning. has started to wear one hearing aid (in his worse ear) for 1-2 hours each day in order to find out whether it helps him - so far we are not sure whether it does. We hesitate to put the hearing aid in for too long as we don't want to destroy healthy structure, and his loss is fluctuating. Marie --------------------------------- BT Yahoo! Broadband - Free modem offer, sign up online today and save £80 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Hi Marie, Check out Auditory Verbal UK (http://www.oxfordav.co.uk/ click on family pages) for stories of families who have raised bilingual hearing impaired children. The profile of tells of a German family raising their daughter with a severe hearing loss with both German and English. I'm sure there are other stories out there as well, this is one I just happen to know of offhand. While the communication option should be made entirely by your family, I thought you might like to read about how a family has chosen to bring two languages into their child's life. There are also great UK resources on that site too-- I actually visit the page often!! Kerry Hi, I have recently joined this group and would like to briefly introduce myself and my family. My name is Marie, and we (ie my husband and I) have 2 children; Felix is 2 1/4 years old and 4 months. has been diagnosed with auditory neuropathy with a (somewhat fluctuating) severe to profound hearing loss. We live in London. While is English, I am German, and Felix grows up bilingually - something we would really like for as well, although at the moment we don't even know yet how he will learn language at all, and are not sure whether to sign, use cued speech or what else - we are still very much at the beginning. has started to wear one hearing aid (in his worse ear) for 1-2 hours each day in order to find out whether it helps him - so far we are not sure whether it does. We hesitate to put the hearing aid in for too long as we don't want to destroy healthy structure, and his loss is fluctuating. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Hi Marie, Check out Auditory Verbal UK (http://www.oxfordav.co.uk/ click on family pages) for stories of families who have raised bilingual hearing impaired children. The profile of tells of a German family raising their daughter with a severe hearing loss with both German and English. I'm sure there are other stories out there as well, this is one I just happen to know of offhand. While the communication option should be made entirely by your family, I thought you might like to read about how a family has chosen to bring two languages into their child's life. There are also great UK resources on that site too-- I actually visit the page often!! Kerry Hi, I have recently joined this group and would like to briefly introduce myself and my family. My name is Marie, and we (ie my husband and I) have 2 children; Felix is 2 1/4 years old and 4 months. has been diagnosed with auditory neuropathy with a (somewhat fluctuating) severe to profound hearing loss. We live in London. While is English, I am German, and Felix grows up bilingually - something we would really like for as well, although at the moment we don't even know yet how he will learn language at all, and are not sure whether to sign, use cued speech or what else - we are still very much at the beginning. has started to wear one hearing aid (in his worse ear) for 1-2 hours each day in order to find out whether it helps him - so far we are not sure whether it does. We hesitate to put the hearing aid in for too long as we don't want to destroy healthy structure, and his loss is fluctuating. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 nice to meet you. I wanted to say hi and welcome, I am , I have two children one with spina bifida and one with another condition and hearing loss. It's kind of funny to meet you here. Are you a member of any of the spina bifida lists? There is SB parents and sb moms n dads. Yes it says parents but grandparents are welcome too. There are also adults with sb on there as well. Anyway if you aren't already a member I would welcome you to join. My spina bifida son is 5 and my hearing impaired son is 3. I consider him Deaf because he doesn't understand any hearing even though the schools are having a hard time even accepting he is mildly hearing impaired. Very frustrating. My son also is in a class with the severely delayed children and he isn't severely delayed. He has been using the sign eat for years and the other day the teacher wrote home all excited that he signed eat, I'm thinking " HELLO!!! " I have said from the beginning their expectations of him are too low, they don't require him to sign back to them. He won't do it unless you make him, once you make him do it for a long time finally he will start doing it on his own, it's just his personallity to try to get by communicating his own way and do as little as you want as he can and he does really good at it which is why you have to push him. How is he ever supposed to communicate well if they don't make him sign? Anyway I understand your frustrations and if you would like to talk privately about either condition let me know. Introduction Hello, I have been lurking for a while and decided to come forward. I'm grandma to an almost four year old who is moderate to severely deaf. He does have hearing aides. He lives close by with his family and I see them often. He is in a " total communication " program. It is actually a class of severely handicapped children, he is the only hearing impaired child. His parents have been trying to get an inter-district transfer to a pre-school for deaf children, but they are having a hard time. The district with the deaf class is in another county and they say they want to save spaces for children in their own county. It is very frustrating to know there is a program close by but not be able to get in. Sometimes the school forgets the " total " communication part and just works on oral stuff. I'm learning ASL and sit with my grandson during Sunday School classes and try to help there. I just want to say that as have read your posts I really admire all of you. You are being great advocates for your children. You are very knowledgeable. I must say that I don't really understand very much about the technical part of deafness. So a lot of your terms are new to me and go right over my head. But slowly I will learn. Keep up the good work with your children. hugs, mom to six, grandma to two, including my little grandson Spencer, deaf and my youngest son Evan 16, spina bifida, hydrocephalus, RTA type 4, nephrocalcinosis etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 nice to meet you. I wanted to say hi and welcome, I am , I have two children one with spina bifida and one with another condition and hearing loss. It's kind of funny to meet you here. Are you a member of any of the spina bifida lists? There is SB parents and sb moms n dads. Yes it says parents but grandparents are welcome too. There are also adults with sb on there as well. Anyway if you aren't already a member I would welcome you to join. My spina bifida son is 5 and my hearing impaired son is 3. I consider him Deaf because he doesn't understand any hearing even though the schools are having a hard time even accepting he is mildly hearing impaired. Very frustrating. My son also is in a class with the severely delayed children and he isn't severely delayed. He has been using the sign eat for years and the other day the teacher wrote home all excited that he signed eat, I'm thinking " HELLO!!! " I have said from the beginning their expectations of him are too low, they don't require him to sign back to them. He won't do it unless you make him, once you make him do it for a long time finally he will start doing it on his own, it's just his personallity to try to get by communicating his own way and do as little as you want as he can and he does really good at it which is why you have to push him. How is he ever supposed to communicate well if they don't make him sign? Anyway I understand your frustrations and if you would like to talk privately about either condition let me know. Introduction Hello, I have been lurking for a while and decided to come forward. I'm grandma to an almost four year old who is moderate to severely deaf. He does have hearing aides. He lives close by with his family and I see them often. He is in a " total communication " program. It is actually a class of severely handicapped children, he is the only hearing impaired child. His parents have been trying to get an inter-district transfer to a pre-school for deaf children, but they are having a hard time. The district with the deaf class is in another county and they say they want to save spaces for children in their own county. It is very frustrating to know there is a program close by but not be able to get in. Sometimes the school forgets the " total " communication part and just works on oral stuff. I'm learning ASL and sit with my grandson during Sunday School classes and try to help there. I just want to say that as have read your posts I really admire all of you. You are being great advocates for your children. You are very knowledgeable. I must say that I don't really understand very much about the technical part of deafness. So a lot of your terms are new to me and go right over my head. But slowly I will learn. Keep up the good work with your children. hugs, mom to six, grandma to two, including my little grandson Spencer, deaf and my youngest son Evan 16, spina bifida, hydrocephalus, RTA type 4, nephrocalcinosis etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2004 Report Share Posted February 16, 2004 nice to meet you. I wanted to say hi and welcome, I am , I have two children one with spina bifida and one with another condition and hearing loss. It's kind of funny to meet you here. Are you a member of any of the spina bifida lists? There is SB parents and sb moms n dads. Yes it says parents but grandparents are welcome too. There are also adults with sb on there as well. Anyway if you aren't already a member I would welcome you to join. My spina bifida son is 5 and my hearing impaired son is 3. I consider him Deaf because he doesn't understand any hearing even though the schools are having a hard time even accepting he is mildly hearing impaired. Very frustrating. My son also is in a class with the severely delayed children and he isn't severely delayed. He has been using the sign eat for years and the other day the teacher wrote home all excited that he signed eat, I'm thinking " HELLO!!! " I have said from the beginning their expectations of him are too low, they don't require him to sign back to them. He won't do it unless you make him, once you make him do it for a long time finally he will start doing it on his own, it's just his personallity to try to get by communicating his own way and do as little as you want as he can and he does really good at it which is why you have to push him. How is he ever supposed to communicate well if they don't make him sign? Anyway I understand your frustrations and if you would like to talk privately about either condition let me know. Introduction Hello, I have been lurking for a while and decided to come forward. I'm grandma to an almost four year old who is moderate to severely deaf. He does have hearing aides. He lives close by with his family and I see them often. He is in a " total communication " program. It is actually a class of severely handicapped children, he is the only hearing impaired child. His parents have been trying to get an inter-district transfer to a pre-school for deaf children, but they are having a hard time. The district with the deaf class is in another county and they say they want to save spaces for children in their own county. It is very frustrating to know there is a program close by but not be able to get in. Sometimes the school forgets the " total " communication part and just works on oral stuff. I'm learning ASL and sit with my grandson during Sunday School classes and try to help there. I just want to say that as have read your posts I really admire all of you. You are being great advocates for your children. You are very knowledgeable. I must say that I don't really understand very much about the technical part of deafness. So a lot of your terms are new to me and go right over my head. But slowly I will learn. Keep up the good work with your children. hugs, mom to six, grandma to two, including my little grandson Spencer, deaf and my youngest son Evan 16, spina bifida, hydrocephalus, RTA type 4, nephrocalcinosis etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Hi, Every case is different but a good integrated FM system may really help Spencer. Phonax and others are available. In terms of the school situation he should be in a Deaf/Hard of Hearing Classroom. He can not identify with the other kids in the class. The distridt has an obligation to provide him an appropriate education and this is not appropriate. Parents usually have to become very aggressive advocates in these situations and sometimes get and advocate from DCARA or one of the other organizations to attend IEP's with them. Parents can also file for due process and sue the district for not providing the apporpriate education. You may want to check out the information on the Listen- up web site. Many of us have been through many of these battles and can be a resource and support. My son is going to High School in the fall and has a moderate to profound loss in one ear and a profound loss in t he other. He has made it with the use of a GOOD FM system, and real time transcription in the classroom - that was a tough one to get. Unfortunately, we have now had to move in order for him to go to a smaller High school with his friends since we were on an interdistrict transfer. The High School District diecided this year to not allow transfers of any special ed students. Feel free to e-mail me. Vern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Hi, Every case is different but a good integrated FM system may really help Spencer. Phonax and others are available. In terms of the school situation he should be in a Deaf/Hard of Hearing Classroom. He can not identify with the other kids in the class. The distridt has an obligation to provide him an appropriate education and this is not appropriate. Parents usually have to become very aggressive advocates in these situations and sometimes get and advocate from DCARA or one of the other organizations to attend IEP's with them. Parents can also file for due process and sue the district for not providing the apporpriate education. You may want to check out the information on the Listen- up web site. Many of us have been through many of these battles and can be a resource and support. My son is going to High School in the fall and has a moderate to profound loss in one ear and a profound loss in t he other. He has made it with the use of a GOOD FM system, and real time transcription in the classroom - that was a tough one to get. Unfortunately, we have now had to move in order for him to go to a smaller High school with his friends since we were on an interdistrict transfer. The High School District diecided this year to not allow transfers of any special ed students. Feel free to e-mail me. Vern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Hi . Welcome to the list. I'm in the Chicago area also. McHenry county. een Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Hey , Welcome. I'm Jill, mom to 2 kids, one Ian (13 HOH) and the other (10 hearing). It's a good list. Many different styles of communication, many different opinions and lots of help and support ... nice people! --Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Hey , Welcome. I'm Jill, mom to 2 kids, one Ian (13 HOH) and the other (10 hearing). It's a good list. Many different styles of communication, many different opinions and lots of help and support ... nice people! --Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Hey , Welcome. I'm Jill, mom to 2 kids, one Ian (13 HOH) and the other (10 hearing). It's a good list. Many different styles of communication, many different opinions and lots of help and support ... nice people! --Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Welcome to the group . I've found this group to be very supportive and highly informative. Let us know what state you are in -- there could very well be some parents who live or have lived in the past in your state. Services vary from state to sate so this information will help. I cannot supply specific info on CI's; my daughter has a moderate loss and wears HAs. But, when I read your post, I wondered if your daughter might be reading lips and has learned to say mamamam this way. My daughter gets wonderful benefit from her aids but also is a self taught lip reader. She can her in the tub/pool if I really project my voice but really relies in the lip reading then. My daughter is 3. Did your daughter have an ABR test? I would make sure this is done, especially if you suspect that she might be hearing better than diagnosed. I'm sure others will supply some helpful CI info. The whole process is overwhelming at first; and you have been through a lot already. Keep the questions coming. H Mom to Jessie 3, moderate loss. HA introduction Hello My name is and my daughter was born June 2, 2003 on June 11, 2003 she had open heart surgery and we finally got to bring her home on July 22. She is repaired, and we thought the road to the Medical Center here in Houston was in the past. She was diagnosed in April with severe to profound hearing loss, after many test and 2 different ENT's - we finally found out why she could not hear. Kaila's cochlea's did not fully develop. I found out Monday August 16th that she has been referred for cochlear implants. She was wearing one hearing aid (a loaner) - when she would leave it alone. Now the ENT has advised me not to invest in hearing aids yet. I've done some reading and know that it is very important for her to hear sounds. (by the way I know she can hear sounds, because I taught her to say mamamama - and that's about all she says)the hearing aid we have has a very loud ringing noise and she cries when I put it into her " good " ear. I'm not happy with her audiologist, I found out more information from another parent I spotted at Chuck E Cheese. My insurance does not pay for hearing aids or hearing test. And we are still trying to pay off the hospital bills from her heart surgery. I would like to know more about cochlear implants before her appointments, so I can bring up any questions to the doctor. From what I've read, I really want her to have them - but after everything she has been through I am a little apprehensive. Mother of Kaila 14 months - severe to profound hearing loss & Tara 6 yrs old - normal hearing All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Welcome to the group . I've found this group to be very supportive and highly informative. Let us know what state you are in -- there could very well be some parents who live or have lived in the past in your state. Services vary from state to sate so this information will help. I cannot supply specific info on CI's; my daughter has a moderate loss and wears HAs. But, when I read your post, I wondered if your daughter might be reading lips and has learned to say mamamam this way. My daughter gets wonderful benefit from her aids but also is a self taught lip reader. She can her in the tub/pool if I really project my voice but really relies in the lip reading then. My daughter is 3. Did your daughter have an ABR test? I would make sure this is done, especially if you suspect that she might be hearing better than diagnosed. I'm sure others will supply some helpful CI info. The whole process is overwhelming at first; and you have been through a lot already. Keep the questions coming. H Mom to Jessie 3, moderate loss. HA introduction Hello My name is and my daughter was born June 2, 2003 on June 11, 2003 she had open heart surgery and we finally got to bring her home on July 22. She is repaired, and we thought the road to the Medical Center here in Houston was in the past. She was diagnosed in April with severe to profound hearing loss, after many test and 2 different ENT's - we finally found out why she could not hear. Kaila's cochlea's did not fully develop. I found out Monday August 16th that she has been referred for cochlear implants. She was wearing one hearing aid (a loaner) - when she would leave it alone. Now the ENT has advised me not to invest in hearing aids yet. I've done some reading and know that it is very important for her to hear sounds. (by the way I know she can hear sounds, because I taught her to say mamamama - and that's about all she says)the hearing aid we have has a very loud ringing noise and she cries when I put it into her " good " ear. I'm not happy with her audiologist, I found out more information from another parent I spotted at Chuck E Cheese. My insurance does not pay for hearing aids or hearing test. And we are still trying to pay off the hospital bills from her heart surgery. I would like to know more about cochlear implants before her appointments, so I can bring up any questions to the doctor. From what I've read, I really want her to have them - but after everything she has been through I am a little apprehensive. Mother of Kaila 14 months - severe to profound hearing loss & Tara 6 yrs old - normal hearing All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 Welcome to the group . I've found this group to be very supportive and highly informative. Let us know what state you are in -- there could very well be some parents who live or have lived in the past in your state. Services vary from state to sate so this information will help. I cannot supply specific info on CI's; my daughter has a moderate loss and wears HAs. But, when I read your post, I wondered if your daughter might be reading lips and has learned to say mamamam this way. My daughter gets wonderful benefit from her aids but also is a self taught lip reader. She can her in the tub/pool if I really project my voice but really relies in the lip reading then. My daughter is 3. Did your daughter have an ABR test? I would make sure this is done, especially if you suspect that she might be hearing better than diagnosed. I'm sure others will supply some helpful CI info. The whole process is overwhelming at first; and you have been through a lot already. Keep the questions coming. H Mom to Jessie 3, moderate loss. HA introduction Hello My name is and my daughter was born June 2, 2003 on June 11, 2003 she had open heart surgery and we finally got to bring her home on July 22. She is repaired, and we thought the road to the Medical Center here in Houston was in the past. She was diagnosed in April with severe to profound hearing loss, after many test and 2 different ENT's - we finally found out why she could not hear. Kaila's cochlea's did not fully develop. I found out Monday August 16th that she has been referred for cochlear implants. She was wearing one hearing aid (a loaner) - when she would leave it alone. Now the ENT has advised me not to invest in hearing aids yet. I've done some reading and know that it is very important for her to hear sounds. (by the way I know she can hear sounds, because I taught her to say mamamama - and that's about all she says)the hearing aid we have has a very loud ringing noise and she cries when I put it into her " good " ear. I'm not happy with her audiologist, I found out more information from another parent I spotted at Chuck E Cheese. My insurance does not pay for hearing aids or hearing test. And we are still trying to pay off the hospital bills from her heart surgery. I would like to know more about cochlear implants before her appointments, so I can bring up any questions to the doctor. From what I've read, I really want her to have them - but after everything she has been through I am a little apprehensive. Mother of Kaila 14 months - severe to profound hearing loss & Tara 6 yrs old - normal hearing All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
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