Guest guest Posted June 22, 2005 Report Share Posted June 22, 2005 This is such a huge decision. And the decision is different for different families. I will try to answer your questions by giving you the reasons why we decided to go with this. First of all, yes, CI is forever. What I mean by that is once it is done you can never go back. You destroy any residual hearing in that ear. So if you implant and then decide that it wasn't for her then you can not use a hearing aid in that ear. So it will change her life forever. Now for us that was not a bad decision. We had our daughter bilaterally implanted about 1 1/2 years ago and she is doing just awesome. She was getting the most from her hearing aids but really wasn't able to hear enough to be able to use speech. We did try sing language but she did not like it. She refused to sign. But would try to use her voice. This was the reason that we chose to look into implants. So Annika will never be the same as before. But now she can talk and she can hear. Yes, it is a more mechanical sound(or so I am told) but she doesn't know any different. This is kind of my simplistic explanation in the difference between hearing aids and CI's. With aids the sound is amplified, all of it. With the CI, she hears but in a different way. But to her this is what hearing is like. She doesn't remember anything different(she lost her hearing at 2 1/2 months old). Now for devices. I think to just say that they all work and that is what is important. We have the Advanced Bionics Hi Res implant. We chose this one for very personal reasons. We liked it better than the others for us. But also because it was the one implant that her CI center had the most experience with. Now if we wanted the other one all that would mean would be to either switch CI centers or do it anyway. It is not like they don't have any experience with the other one but just not as much. As far as problems later on. Yes, the implant will fail in her lifetime. That is something that you can probably count on but that just means she will have to go back and reimplant. I am not trying to make this a small issue because it really is not something you wish to happen. But for us the risk is not a big deal in comparison to her being able to hear and listen and speak. There are days I have to remind myself that she is deaf. She can't hear me without the implants. She can talk with her implants on or off(she is just an incredible lip reader already). Now yes there is a difference she cannot hear with them off. What is so neat for us is that there was a day that people would notice that she was deaf(either because we signed or she wasn't able to hear sounds) but now people notice her physical delays (she has spastic cerebral palsy) and hardly ever question her " buttons " on her head. Most people just think that they are some hair pretties. Totally amazing to us. I think that is all your questions. I hope this helps. Mom of 4 Marcus 14 13 Jon 11 Annika 3 bilaterally implanted 3/1/04 hookup 3/25/04 spastic diaplegic CP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 In a message dated 6/22/2005 7:47:54 A.M. Eastern Daylight Time, muneeba_mahmood@... writes: I want to ask u what r the perfered divices used in CI and secondly is CI is for ever? like If once she had it then she will have no problem in her operated ear later on?? how many of u think that hearing thru CI is far more better then listening thru hearing aid, ( definitly it is not going to be that clear but the other one is machanically voice)????????? Muneeba, First of all, there are no stupid questions on this list. Almost all of the parents on this list had a point in our lives when we knew almost nothing about hearing loss or deafness. We all asked questions of anyone who might be able to help us learn. I asked questions of anyone and everyone who I thought might be able to help me to help my son. And by sharing what we learned, we help the newer parents learn. It is much friendlier and easier than trying to sort out all the technical information from all the different doctors. Doctors are great, but their technical explanations can be overwhelming. As the other parents have already said, a CI is forever. By implanting the CI device into the ear, the inner ear, the cochlea is basically destroyed. That is why a CI is suggested only after it is found that there is little or no help from wearing hearing aids. After the operation, when the child cannot wear the CI (like when they are swimming) they are deaf. But you cannot wear a hearing aid when swimming either, so that is not a big difference. A CI is an electronic device. When we found out that our son, Ian, could become a candidate, he started calling it the " computer for my ears " and " the computer in my head. " But it is not a little computer voice repeating what it hears. It takes the sound and stimulates the nerves. It replaces the cochlea (inner ear) in the process of getting the sound impulses to the auditory nerve. It is not a little robot voice. The CI does not talk. It replaces the cochlea. A CI skips past the eardrum and middle ear and brings the impulses right to the auditory nerve which passes that info to the brain which interprets the impulses as sounds. It does sound different to what we hearing-people hear, but I am told that after a while, it does not seem to be different at all. I know this because I asked my own silly questions. Our son started losing his hearing around kindergarten, so he use to hear just fine. He requested that I ask people on this list how the sound was different. The funniest response was that right after getting the CI, one lady thought it sounded like " a Smurf underwater " but after a very short time, she stopped noticing anything odd and it was just normal sounds because her brain had adjusted. If the time comes that Ian can get a CI, then he will be able to tell me what the difference is. Please ask more questions. If anything we have said does not make sense to you, or if you want more information, just ask. We are here to help, as well as to learn. Best -- Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2005 Report Share Posted June 24, 2005 Hi Muneeba, I am a mom with a sever to profoundly deaf daughter. I can give you the point of view from a family who chose not to get a CI. No matter what choices we make we all still have children with hearing loss. With hearing aids, or implants our lives have been changed forever. I think when making such a decision it's important to think about what device or method will work best for your family and the way you live your life. Doctors are very quick to make the choice for us, but they are not the ones to live with the choice. The first thing I did upon finding out about my daughter hearing loss was research. I went out and found organizations, conferences, and fun events where I could meet other people with hearing loss. I needed desperately to understand what it meant to be deaf. Everyone around me was full of information. The teachers, doctors, audiologist, but none of them had a hearing loss. Once I spoke with various deaf adults and children, and began educating myself on the " culture " I was able to breath again. I knew that no matter what choice we made our daughter could live a happy and successful life. For our family we decided that we could not make such a major decision that involves surgery and physically changing her body for our daughter. We feel very strong that once she is older and fully understands what a CI is and how it works, she may decide to have it done. However, this means that we will miss the window of opportunity for the speech skills that can be aquired through the CI. Making the choice to give her the choice meant that we would have to work ten tims harder and give her every available tool to succeed with hearing aids. It also means that we are accepting the fact that ASL is her first and strongest language. Although we use sign language and spoken english, total communication, we have to know that Zahra is not going to be a strictly oral child. I do not know if I lived in another city and did not have the resources available to me that we would have made such a choice. Because we live in Los Angeles California and there is a huge Deaf community, our system of support is amazing! All of our family and friends have changed their lives to communicate with Zahra. We actually have several friends who decided to take sign language class on their own time in order to learn our daughter's first language. I was practially in tears when just last month we had our first party with our hearing and deaf friends together. To see my crazy friends, artist, musicians, actors, people who you'd never expect, making an effort to communicate with our deaf friends with painfully slow finger spelling was so awesome! This works for our family, we were able to adapt and change our views on life and language and accept Deaf Culture as a part of our family. And if one day my daughter comes to me and says, mom I want to get a CI. Then we will happily accept that as a part of our life too! Just know that your daughter can have a fantastic life no matter what choice you make. Best of Luck, Apryl > Dear All > Hello > I am receiving ur letters full with new ideas, and > suggestions from last two yrs. My daughter is hard of > hearing profound, using digital hearing aid since she > was 1 yr old. our dr is now suggesting us to get her > CI done. I want to ask u what r the perfered divices > used in CI and secondly is CI is for ever? like If > once she had it then she will have no problem in her > operated ear later on?? how many of u think that > hearing thru CI is far more better then listening thru > hearing aid, ( definitly it is not going to be that > clear but the other one is machanically > voice)????????? > I think my Question will look like i am so stupid > asking these silly questions but i want to satisfy my > self before taking the decision. > Hoping to get a good responce from u all. As i live in > third world country where we don't get much > informations. > Thanks > muneeba ( mom of Adiva Ahmad 3yr old) > > > > ____________________________________________________ > Yahoo! Sports > Rekindle the Rivalries. Sign up for Fantasy Football > http://football.fantasysports.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2005 Report Share Posted June 26, 2005 Hi- May I ask where in LA you are learning ASL? It occured to me that everyone that has suggested we use a complete oral approach has typical hearing. Just an hour ago, a DHOH list mate on another group pointed out that asking a pedi audi about ASL is similar to asking a formula company about breastfeeding. Thank you in advance for any info. mom to Kate 12 mos mild/mod loss In Listen-Up , " geminigroove " <geminigroove@y...> wrote: > Hi Muneeba, > > I am a mom with a sever to profoundly deaf daughter. I can give you > the point of view from a family who chose not to get a CI. No matter > what choices we make we all still have children with hearing loss. > With hearing aids, or implants our lives have been changed forever. > I think when making such a decision it's important to think about > what device or method will work best for your family and the way you > live your life. Doctors are very quick to make the choice for us, > but they are not the ones to live with the choice. > > The first thing I did upon finding out about my daughter hearing > loss was research. I went out and found organizations, conferences, > and fun events where I could meet other people with hearing loss. I > needed desperately to understand what it meant to be deaf. Everyone > around me was full of information. The teachers, doctors, > audiologist, but none of them had a hearing loss. Once I spoke with > various deaf adults and children, and began educating myself on > the " culture " I was able to breath again. I knew that no matter what > choice we made our daughter could live a happy and successful life. > > For our family we decided that we could not make such a major > decision that involves surgery and physically changing her body for > our daughter. We feel very strong that once she is older and fully > understands what a CI is and how it works, she may decide to have it > done. However, this means that we will miss the window of > opportunity for the speech skills that can be aquired through the > CI. Making the choice to give her the choice meant that we would > have to work ten tims harder and give her every available tool to > succeed with hearing aids. It also means that we are accepting the > fact that ASL is her first and strongest language. Although we use > sign language and spoken english, total communication, we have to > know that Zahra is not going to be a strictly oral child. I do not > know if I lived in another city and did not have the resources > available to me that we would have made such a choice. Because we > live in Los Angeles California and there is a huge Deaf community, > our system of support is amazing! All of our family and friends have > changed their lives to communicate with Zahra. We actually have > several friends who decided to take sign language class on their own > time in order to learn our daughter's first language. I was > practially in tears when just last month we had our first party with > our hearing and deaf friends together. To see my crazy friends, > artist, musicians, actors, people who you'd never expect, making an > effort to communicate with our deaf friends with painfully slow > finger spelling was so awesome! This works for our family, we were > able to adapt and change our views on life and language and accept > Deaf Culture as a part of our family. And if one day my daughter > comes to me and says, mom I want to get a CI. Then we will happily > accept that as a part of our life too! > > Just know that your daughter can have a fantastic life no matter > what choice you make. > > Best of Luck, > Apryl > > > > Dear All > > Hello > > I am receiving ur letters full with new ideas, and > > suggestions from last two yrs. My daughter is hard of > > hearing profound, using digital hearing aid since she > > was 1 yr old. our dr is now suggesting us to get her > > CI done. I want to ask u what r the perfered divices > > used in CI and secondly is CI is for ever? like If > > once she had it then she will have no problem in her > > operated ear later on?? how many of u think that > > hearing thru CI is far more better then listening thru > > hearing aid, ( definitly it is not going to be that > > clear but the other one is machanically > > voice)????????? > > I think my Question will look like i am so stupid > > asking these silly questions but i want to satisfy my > > self before taking the decision. > > Hoping to get a good responce from u all. As i live in > > third world country where we don't get much > > informations. > > Thanks > > muneeba ( mom of Adiva Ahmad 3yr old) > > > > > > > > ____________________________________________________ > > Yahoo! Sports > > Rekindle the Rivalries. Sign up for Fantasy Football > > http://football.fantasysports.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 --- You wrote: Hi- May I ask where in LA you are learning ASL? It occured to me that everyone that has suggested we use a complete oral approach has typical hearing. Just an hour ago, a DHOH list mate on another group pointed out that asking a pedi audi about ASL is similar to asking a formula company about breastfeeding. --- end of quote --- HI - I think that's true to some degree. I certainly feel like I'm better informed on hearing loss issues than our pediatrician, but on the other hand, she sends HER residents to US if they have questions so fortunately, she knows that she doesn't know. Barbara ****************************** Barbara Mellert Manager, Social Science Computing Kiewit Computing Services Dartmouth College Hanover NH 03755 Tel: 603/646-2877 URL: http://www.dartmouth.edu/~ssc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 You can get pediatric audiologists who know sign. We had one (in Thousand Oaks). Her name is Eleanor . Some of the audis at UCLA sign - the CI coordinator signs, and also UCLA provides an interpreter for mapping sessions. If you call any school for the deaf that uses TC or simultaneous communication (sim/com) they also have pediatric audiologists who sign. I also met an audiologist in Ventura who signs ( with Gold Coast Audiologists). I took ASL at Moorpark College, but I would recommend you contact Greater Los Angeles Agency on Deafness at http://www.gladinc.org/ and ask where they recommend you take classes. The base office is LA and they have satellite offices in Bakersfield, Ventura, etc (see the site). I also totally agree with Geminigroove's recommendations! She is right on! A great thing to do is Deaf Day at Disneyland usually the first week of March. One note - I did decide to implant my daughter at age 11. This was more my choice than hers, but now we are both happy with the decision. ---> Hi- May I ask where in LA you are learning ASL? It occured to me > that everyone that has suggested we use a complete oral approach has > typical hearing. Just an hour ago, a DHOH list mate on another group > pointed out that asking a pedi audi about ASL is similar to asking a > formula company about breastfeeding. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 We had found the same to be true of our pediatricians when it came to food allergies. Our son has multiple life-threatening food allergies and the practice we go to had very little knowledge of life with allergies to that extent. They've been great about learning what they need to know to accommodate us and other families. They've learned with us and from us. On the other note, we started learning ASL at home through a state program. Our son was still covered under early intervention so our state agency paid for it. A HOH adult came to our house for 10 weeks (2 hours each time) and taught us as a family. It was a wonderful experience for us all. We live in NH. I'm not sure if other states have such programs. They have a second 10-week course that we'd love to take, but our school district won't pay and we can't afford it right now. In the meantime, my husband has taken ASL classes at the deaf/hoh school 45 minutes from our house. johanna Barbara.T.Mellert@... wrote: --- You wrote: Hi- May I ask where in LA you are learning ASL? It occured to me that everyone that has suggested we use a complete oral approach has typical hearing. Just an hour ago, a DHOH list mate on another group pointed out that asking a pedi audi about ASL is similar to asking a formula company about breastfeeding. --- end of quote --- HI - I think that's true to some degree. I certainly feel like I'm better informed on hearing loss issues than our pediatrician, but on the other hand, she sends HER residents to US if they have questions so fortunately, she knows that she doesn't know. Barbara ****************************** Barbara Mellert Manager, Social Science Computing Kiewit Computing Services Dartmouth College Hanover NH 03755 Tel: 603/646-2877 URL: http://www.dartmouth.edu/~ssc 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 April 18, 2006 Report Share Posted April 18, 2006 lol Don't ask me, Carolyn. 84 is my normal resting heart rate! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 Well, that certainly adds a new perspective! LOL CarolynTammy Wolfgram wrote: lol Don't ask me, Carolyn. 84 is my normal resting heart rate!Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 > > Hi, Everyone-- > > I hope you're all doing well. I have a few questions about the adrenal glands/function, as I'm becoming suspicious of my newest bout of symptoms. > > Do I get a blood test to see if my adrenals are out of whack? If so/If not, what is the test called? > > My New Goofy Symptoms > I spend almost every other night staring at the ceiling, tired but not able to sleep until about 3am. My heart rate, even with beta blockers, won't go below 84 beats per minute on these occasions, as well. The next day, I'm exhausted and my meds kick in. > > Action Steps > I have an appointment to see my doctor on Saturday, April 29th. How worried should I be--meaning, do I try to get an earlier appointment? > > Best to all-- > > Carolyn > What meds are you taking and how are you taking them? Dose, etc?? Kats3boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 Hi Liz, I am peri meno as well. However, after doing some research, I chose not to use estrogen to combat it. As our bodies grow older and start going thru meno...the body's level of progestrone drops. Estrogen and Prog need to be balanced. Many docs say that you need to add estrogen, but if that is increasing due to the decrease in prog, it didn't make sense to me. I use a natural progesterone cream 14 days out of the month. It took a couple of months to get the hot flashes etc...under control, but at this point, I might have one or two hotflashes a month ( rather than two or three a day). Rhonda Beagan that posts here sometimes, can explain it much better than I can. Anyway, HTH. Kat > > Dear Group, > > Just as there are certain foods those of us with thyroid disease (hypothyroidism) should avoid, are there certain foods that enhance thyroid function? > > Also, I recently started on HRT (Prempro, which I don't like) and was told it would not interfere with the thyroid medication I am taking (levothyroxine.) This synthetic hormone replacement therapy is supposed to relieve some of the unpleasant peri-menopausal symptoms I've been experiencing lately. > > Is anyone else on this list undergoing a similar treatment? If so, how's it going for you? > > I've got an appointment with my GP in a couple weeks, and I'm going to request a safer HRT alternative than the Prempro. After researching this product online, and although I'm taking a very small dose, I am concerned about the possibility of exposing myself to more serious health problems over time. > > Liz > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 Dear Kat, and thanks for your post. I understand the process, yet the symptoms I've started experiencing got to the point where they were interfering with my daily life. It's been six months since I had my last "barely there" period, and am hoping to make it through the next six months without another one in order to be done with it...yes! The goal, of course, is to start feeling better as soon as possible and recovering some semblance of feeling as good as I used to (or as much as possible) before starting peri-menopause. Liz Hi Liz, I am peri meno as well. However, after doing some research, I chose not to use estrogen to combat it. As our bodies grow older and start going thru meno...the body's level of progestrone drops. Estrogen and Prog need to be balanced. Many docs say that you need to add estrogen, but if that is increasing due to the decrease in prog, it didn't make sense to me. I use a natural progesterone cream 14 days out of the month. It took a couple of months to get the hot flashes etc...under control, but at this point, I might have one or two hotflashes a month ( rather than two or three a day). Rhonda Beagan that posts here sometimes, can explain it much better than I can.Anyway, HTH.Kat>> Dear Group,> > Just as there are certain foods those of us with thyroid disease (hypothyroidism) should avoid, are there certain foods that enhance thyroid function? > > Also, I recently started on HRT (Prempro, which I don't like) and was told it would not interfere with the thyroid medication I am taking (levothyroxine.) This synthetic hormone replacement therapy is supposed to relieve some of the unpleasant peri-menopausal symptoms I've been experiencing lately. > > Is anyone else on this list undergoing a similar treatment? If so, how's it going for you?> > I've got an appointment with my GP in a couple weeks, and I'm going to request a safer HRT alternative than the Prempro. After researching this product online, and although I'm taking a very small dose, I am concerned about the possibility of exposing myself to more serious health problems over time. > > Liz> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 Hi Liz There are a couple of foods that I know of which can help your thyroid, and I'm sure there are many others. Brazil nuts are good for selenium which is essential to help convert your T4 to T3. Virgin Coconut Oil and coconut products in general help speed up the metabolism, helping with body temperature, cold extremeties and metabolism of your meals, etc. I've also read that zucchini are good for the thyroid - I think it is to do with the sodium level? Celtic Sea Salt also provides a whole range of trace minerals which you may be lacking. HTH Katy > > Dear Group, > > Just as there are certain foods those of us with thyroid disease (hypothyroidism) should avoid, are there certain foods that enhance thyroid function? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 Thanks for your input, Katy. Although I have read about the benefits of coconut oil, it is a saturated fat, and not very healthy. Liz Quote Link to comment Share on other sites More sharing options...
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