Guest guest Posted July 8, 2001 Report Share Posted July 8, 2001 Hello Everyone, well, have you ever had one of those days where nothing goes right and then the next day everything is completely different. brandon is much better, his puls ox is 89-93 % he don't need oxygen for now , able to run around the hospital as he wants. totally different than the other day. the dr still wants to keep him for a total of 3 weeks. she is changing his enzymes, from pancreacarb back to ultrase mt 20. not sure what his co2 level is now, still don't know how much damage this has done, if it did damage at all. but we still have to look and find a place for transplant. thanks everyone chris mom of 3 brandon 12 yrs w cf _______________________________________________________ Send a cool gift with your E-Card http://www.bluemountain.com/giftcenter/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 Nan I really feel for you and your family. Going through this must be so very hard. I hope things can be worked out so her son can see her, for both of their sakes. Hugs, laurie > > Reply-To: > Date: Thu, 28 Aug 2003 20:02:36 -0000 > To: > Subject: Update > > Yesterday, after an extended visit at the hospital, and in the face > of ongoing protests from that she was doing " just fine " and > didn't need Potassium or TPN or anything more than juice and water, > my husband again had to invoke his power of attorney to have her > sedated so that they could start her TPN (again). She has repeatedly > pulled out her IV lines and continues to argue that she knows her > body better than anyone and she knows that her values are all fine > (trust me, they aren't). This was a necessary step because she was > headed into renal failure. She is now resting comfortably and will > continue to be sedated for several days until it is felt that the > imminent danger of renal failure has passed. > > She is not at this point aware of the severity of her medical > condition and believes that she has a simple thyroid problem that > could be treated with medication. > > It is so sad for us to watch this. We have been in touch with her > counselor on an ongoing basis and are working out the best way for > her son to see her without being unduly traumatized by the fact that > she currently weighs under 70 lbs. When not sedated, she says she is > ready for " battle " and that she doesn't want her " son to see her with > all of these tubes " . She keeps removing them for his benefit (she > thinks). > > Thanks for all of your thoughts and prayers -- > > Nan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 Dear Nan, I am very sorry to hear of the difficult time (and your family is going through). You all are in my prayers. Vivian > Yesterday, after an extended visit at the hospital, and in the face > of ongoing protests from that she was doing " just fine " and > didn't need Potassium or TPN or anything more than juice and water, > my husband again had to invoke his power of attorney to have her > sedated so that they could start her TPN (again). She has repeatedly > pulled out her IV lines and continues to argue that she knows her > body better than anyone and she knows that her values are all fine > (trust me, they aren't). This was a necessary step because she was > headed into renal failure. She is now resting comfortably and will > continue to be sedated for several days until it is felt that the > imminent danger of renal failure has passed. > > She is not at this point aware of the severity of her medical > condition and believes that she has a simple thyroid problem that > could be treated with medication. > > It is so sad for us to watch this. We have been in touch with her > counselor on an ongoing basis and are working out the best way for > her son to see her without being unduly traumatized by the fact that > she currently weighs under 70 lbs. When not sedated, she says she is > ready for " battle " and that she doesn't want her " son to see her with > all of these tubes " . She keeps removing them for his benefit (she > thinks). > > Thanks for all of your thoughts and prayers -- > > Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2003 Report Share Posted September 27, 2003 Nan, I am so sorry to hear that is in critical condition. Do you have guardianship so that you can make sure she gets what she needs or is she making her medical decisions? I sure hope they can get her infections taken care of and get back on the recovery road. Nan wrote: >Just a quick note to update you on 's current situation. > >She remains hospitalized and is currently considered in critical >condition. Her weight is down to 63 lbs. All of her lines have been >pulled due to infections and she is receiving limited feeding until >she is infection free for 3 full days. In the meantime she has little >energy and drifts in and out of sleep/consciousness. All of our >contact with her (unless we are physically present) is through the >nursing staff because she no longer seems to answer the phone. > >Please pray for her. > >Nan in Illinois > > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2003 Report Share Posted September 27, 2003 My husband, her father, has medical power of attorney and has been making her medical decisions since she has been unable to make them on her own. We went to see her last night (the hospital is about 1.5 hours from our home) and stayed with her while they tried to do a CT of her abdomen. Unfortunately, she was in too much pain for them to get more than about 5 pictures so we don't know how valuable it will be from a diagnostic standpoint. She looked well hydrated and they are giving her lipids and hyper-al via her new pic line, but it is a slow process and we won't know for a while if it is actually helping. She is on a 24 hour infusion. She knew we were there and we stayed until she seemed to be sleeping somewhat comfortably. We will be going back up this afternoon. Her son turns 5 on Oct 2. She turns 26 on Oct 9. Peace to all of you and thank you so much for your thoughts and prayers. Nan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2003 Report Share Posted September 27, 2003 Nan please know that you and yours are in our prayers Hugs Jan Re: Update > My husband, her father, has medical power of attorney and has been making her > medical decisions since she has been unable to make them on her own. > > We went to see her last night (the hospital is about 1.5 hours from our home) > and stayed with her while they tried to do a CT of her abdomen. > Unfortunately, she was in too much pain for them to get more than about 5 > pictures so we don't know how valuable it will be from a diagnostic > standpoint. > > She looked well hydrated and they are giving her lipids and hyper-al via her > new pic line, but it is a slow process and we won't know for a while if it is > actually helping. She is on a 24 hour infusion. She knew we were there and we > stayed until she seemed to be sleeping somewhat comfortably. We will be going > back up this afternoon. > > Her son turns 5 on Oct 2. She turns 26 on Oct 9. > > Peace to all of you and thank you so much for your thoughts and prayers. > > Nan > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 My mother was diagnosed with ovarian cancer by blood test yesterday. I had suspected she had another cyst, as several years ago she had a benign ovarian cyst that weighed 11 pounds! Anyway, I took her in to see if there was one Wednesday, and then Thursday we got the call. The test tests for a certain hormone that becomes elevated when ovarian cancer is present. She has been having kidney problems lately, which I suspect is interrelated. If nothing else, the cyst is putting pressure on them. Meantime, my mother has a visit with a urologist Monday, and an ultrasound Tuesday. I will keep you all updated. Prayers much appreciated. HUGS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 You might want to teach the sign language yes and no. They are easy and she can learn them even if she can't see. I have two students who are non-verbal and that is what we use and it is helpful. Being able to say them would be nice, but the signs might work in the meantime. laurie > > Reply-To: > Date: Fri, 30 Jan 2004 00:26:06 -0500 > To: < > > Subject: update > > > > > We saw Dr Hersh yesterday.He feels that most of the problems she is having are > due to more neurological involvement.He also does not want to change the > Depakote,we've had so much trouble with the other seizure meds.We'll just keep > a check on the level and liver function.He did want us to get a cooling > blanket,she has some trouble regulating body temp.Also wants us to try a > precussion vest,we tried the massager but she had such fit everytime we did it > that I finally gave up. has some real spacial issues and telling her > she's not falling is a waste of time.Hopefully if we just have to put the vest > on her,she'll be allright with it.I would love to at least increase her lung > capacity enough for her to be able to answer yes or no questions.Right now she > can't get sounds out.It's VERY flustrating for both of us,I want her to be > able to tell me what she wants and she can't. > > She has been very protective of her right arm lately,he felt she showed quite > a bit of resistance in her shoulder so he sent her for x-rays.I haven't heard > back on those yet. > > I do think is doing better on the Dantrium,her muscles are more > relaxed.She is still sleeping to much to suit me but when she is awake she > seems more awake (if that makes sense).She is still not eating much,but she > does have a g-tube so I shouldn't worry about that.The only thing is I don't > want her to forget HOW to eat. > > Every body is still in my prayers. > > ,Mom to > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Thank you for the update on . It sounds like the doc is trying to help her, so that is good. I'm glad to hear that the Depakote levels and liver function will be checked often. Try to keep your chin up and tell we said hi. DeMoss wrote: We saw Dr Hersh yesterday.He feels that most of the problems she is having are due to more neurological involvement.He also does not want to change the Depakote,we've had so much trouble with the other seizure meds.We'll just keep a check on the level and liver function.He did want us to get a cooling blanket,she has some trouble regulating body temp.Also wants us to try a precussion vest,we tried the massager but she had such fit everytime we did it that I finally gave up. has some real spacial issues and telling her she's not falling is a waste of time.Hopefully if we just have to put the vest on her,she'll be allright with it.I would love to at least increase her lung capacity enough for her to be able to answer yes or no questions.Right now she can't get sounds out.It's VERY flustrating for both of us,I want her to be able to tell me what she wants and she can't. She has been very protective of her right arm lately,he felt she showed quite a bit of resistance in her shoulder so he sent her for x-rays.I haven't heard back on those yet. I do think is doing better on the Dantrium,her muscles are more relaxed.She is still sleeping to much to suit me but when she is awake she seems more awake (if that makes sense).She is still not eating much,but she does have a g-tube so I shouldn't worry about that.The only thing is I don't want her to forget HOW to eat. Every body is still in my prayers. ,Mom to Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 I have had some episodes of not speaking, and someone suggested carrying pen and paper. Can you get a write-on/wipe-off board, maybe the size of a sheet of paper, and she could write on that maybe? Another idea is to buy a kid's scratch pad, the kind with a gray plastic sheet over a black waxy board, that the pen pushes on to write. Then the sheet is lifted to erase it. It's really frustrating for me when I can't talk, and my mom went through 6 months of that, and we weren't even thinking about ideas on how to help her communicate. Any potential for using a computer (change font size to real big if there is a vision issue)? How about really simple things, like a traffic light with a green light for " YES " and a traffic light with a red light for " NO " ? I am totally interested in this issue, because I've dealt with this myself, and feel that although I didn't think of options at the time, I could have used something to communicate. Weakness made obvious nodding and shaking my head impossible. And I'm really interested to see if the ability to speak was lost, but I could write. Any stories of similar experiences would help me out a lot. Take care, RH > > > > > > > > > > > We saw Dr Hersh yesterday.He feels that most of the problems she > > is having are due to more neurological involvement.He also does > > not want to change the Depakote,we've had so much trouble with the > > other seizure meds.We'll just keep a check on the level and liver > > function.He did want us to get a cooling blanket,she has some > > trouble regulating body temp.Also wants us to try a precussion > > vest,we tried the massager but she had such fit everytime we did > > it that I finally gave up. has some real spacial issues and > > telling her she's not falling is a waste of time.Hopefully if we > > just have to put the vest on her,she'll be allright with it.I > > would love to at least increase her lung capacity enough for her > > to be able to answer yes or no questions.Right now she can't get > > sounds out.It's VERY flustrating for both of us,I want her to be > > able to tell me what she wants and she can't. > > > > She has been very protective of her right arm lately,he felt she > > showed quite a bit of resistance in her shoulder so he sent her > > for x-rays.I haven't heard back on those yet. > > > > I do think is doing better on the Dantrium,her muscles are > > more relaxed.She is still sleeping to much to suit me but when she > > is awake she seems more awake (if that makes sense).She is still > > not eating much,but she does have a g-tube so I shouldn't worry > > about that.The only thing is I don't want her to forget HOW to eat. > > > > Every body is still in my prayers. > > > > ,Mom to > > > > > > > > Medical advice, information, opinions, data and statements contained > > herein are not necessarily those of the list moderators. The author of > > this e mail is entirely responsible for its content. List members are > > reminded of their responsibility to evaluate the content of the > > postings and consult with their physicians regarding changes in their > > own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends > > one is automatically moderated or removed depending on the severity of > > the attack. > > > > > > > > ------------------------------------------------------------------ ------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 RH There is a universal symbol language if one can see well enough to see the symbols. You can produce the symbols in various sizes and in any combination of symbols. They can be simple ones like yes, no, eat, bathroom, drink, pain on a single board or very complex with many pages in a notebook. These are the symbols that are using used on communication devices. I use them with autistic students. Another thing I use is to take pictures of the person, doing a particular activity such as drinking and then put them together on a board or book. This is more concrete. The symbol system is the Bliss Symbol or Universal Symbols, such as the handicapped symbol, ladies room symbol, etc. I'm not sure if I have the symbol system to produce all the symbols on my computer at school or not. I know I have a sign language program, but may have taken the symbol one off as it took a lot of memory. laurie > > Reply-To: > Date: Fri, 30 Jan 2004 23:33:33 -0000 > To: > Subject: Re: update > > I have had some episodes of not speaking, and someone suggested > carrying pen and paper. Can you get a write-on/wipe-off board, maybe > the size of a sheet of paper, and she could write on that maybe? > > Another idea is to buy a kid's scratch pad, the kind with a gray > plastic sheet over a black waxy board, that the pen pushes on to > write. Then the sheet is lifted to erase it. > > It's really frustrating for me when I can't talk, and my mom went > through 6 months of that, and we weren't even thinking about ideas on > how to help her communicate. Any potential for using a computer > (change font size to real big if there is a vision issue)? > > How about really simple things, like a traffic light with a green > light for " YES " and a traffic light with a red light for " NO " ? > > I am totally interested in this issue, because I've dealt with this > myself, and feel that although I didn't think of options at the time, > I could have used something to communicate. Weakness made obvious > nodding and shaking my head impossible. And I'm really interested to > see if the ability to speak was lost, but I could write. Any stories > of similar experiences would help me out a lot. > > Take care, > RH > > > > > > >> >>> >>> >>> >>> >>> We saw Dr Hersh yesterday.He feels that most of the problems > she >>> is having are due to more neurological involvement.He also > does >>> not want to change the Depakote,we've had so much trouble > with the >>> other seizure meds.We'll just keep a check on the level and > liver >>> function.He did want us to get a cooling blanket,she has some >>> trouble regulating body temp.Also wants us to try a precussion >>> vest,we tried the massager but she had such fit everytime we > did >>> it that I finally gave up. has some real spacial issues > and >>> telling her she's not falling is a waste of time.Hopefully if > we >>> just have to put the vest on her,she'll be allright with it.I >>> would love to at least increase her lung capacity enough for > her >>> to be able to answer yes or no questions.Right now she can't > get >>> sounds out.It's VERY flustrating for both of us,I want her to > be >>> able to tell me what she wants and she can't. >>> >>> She has been very protective of her right arm lately,he felt > she >>> showed quite a bit of resistance in her shoulder so he sent > her >>> for x-rays.I haven't heard back on those yet. >>> >>> I do think is doing better on the Dantrium,her muscles > are >>> more relaxed.She is still sleeping to much to suit me but > when she >>> is awake she seems more awake (if that makes sense).She is > still >>> not eating much,but she does have a g-tube so I shouldn't > worry >>> about that.The only thing is I don't want her to forget HOW > to eat. >>> >>> Every body is still in my prayers. >>> >>> ,Mom to >>> >>> >>> >>> Medical advice, information, opinions, data and statements > contained >>> herein are not necessarily those of the list moderators. The > author of >>> this e mail is entirely responsible for its content. List members > are >>> reminded of their responsibility to evaluate the content of the >>> postings and consult with their physicians regarding changes in > their >>> own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who > sends >>> one is automatically moderated or removed depending on the > severity of >>> the attack. >>> >>> >>> >>> ------------------------------------------------------------------ > ------ >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Like this? Laureta Fitzgerald wrote: RH There is a universal symbol language if one can see well enough to see the symbols. You can produce the symbols in various sizes and in any combination of symbols. They can be simple ones like yes, no, eat, bathroom, drink, pain on a single board or very complex with many pages in a notebook. These are the symbols that are using used on communication devices. I use them with autistic students. Another thing I use is to take pictures of the person, doing a particular activity such as drinking and then put them together on a board or book. This is more concrete. The symbol system is the Bliss Symbol or Universal Symbols, such as the handicapped symbol, ladies room symbol, etc. I'm not sure if I have the symbol system to produce all the symbols on my computer at school or not. I know I have a sign language program, but may have taken the symbol one off as it took a lot of memory. laurie Reply-To: Date: Fri, 30 Jan 2004 23:33:33 -0000 To: Subject: Re: update I have had some episodes of not speaking, and someone suggested carrying pen and paper. Can you get a write-on/wipe-off board, maybe the size of a sheet of paper, and she could write on that maybe? Another idea is to buy a kid's scratch pad, the kind with a gray plastic sheet over a black waxy board, that the pen pushes on to write. Then the sheet is lifted to erase it. It's really frustrating for me when I can't talk, and my mom went through 6 months of that, and we weren't even thinking about ideas on how to help her communicate. Any potential for using a computer (change font size to real big if there is a vision issue)? How about really simple things, like a traffic light with a green light for "YES" and a traffic light with a red light for "NO"? I am totally interested in this issue, because I've dealt with this myself, and feel that although I didn't think of options at the time, I could have used something to communicate. Weakness made obvious nodding and shaking my head impossible. And I'm really interested to see if the ability to speak was lost, but I could write. Any stories of similar experiences would help me out a lot. Take care, RH We saw Dr Hersh yesterday.He feels that most of the problems she is having are due to more neurological involvement.He also does not want to change the Depakote,we've had so much trouble with the other seizure meds.We'll just keep a check on the level and liver function.He did want us to get a cooling blanket,she has some trouble regulating body temp.Also wants us to try a precussion vest,we tried the massager but she had such fit everytime we did it that I finally gave up. has some real spacial issues and telling her she's not falling is a waste of time.Hopefully if we just have to put the vest on her,she'll be allright with it.I would love to at least increase her lung capacity enough for her to be able to answer yes or no questions.Right now she can't get sounds out.It's VERY flustrating for both of us,I want her to be able to tell me what she wants and she can't. She has been very protective of her right arm lately,he felt she showed quite a bit of resistance in her shoulder so he sent her for x-rays.I haven't heard back on those yet. I do think is doing better on the Dantrium,her muscles are more relaxed.She is still sleeping to much to suit me but when she is awake she seems more awake (if that makes sense).She is still not eating much,but she does have a g-tube so I shouldn't worry about that.The only thing is I don't want her to forget HOW to eat. Every body is still in my prayers. ,Mom to Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. ------------------------------------------------------------------ ------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 > > Reply-To: > Date: Fri, 30 Jan 2004 23:33:33 -0000 > To: > Subject: Re: update > > I have had some episodes of not speaking, and someone suggested > carrying pen and paper. Can you get a write-on/wipe-off board, maybe > the size of a sheet of paper, and she could write on that maybe? > > Another idea is to buy a kid's scratch pad, the kind with a gray > plastic sheet over a black waxy board, that the pen pushes on to > write. Then the sheet is lifted to erase it. > > It's really frustrating for me when I can't talk, and my mom went > through 6 months of that, and we weren't even thinking about ideas on > how to help her communicate. Any potential for using a computer > (change font size to real big if there is a vision issue)? > > How about really simple things, like a traffic light with a green > light for " YES " and a traffic light with a red light for " NO " ? > > I am totally interested in this issue, because I've dealt with this > myself, and feel that although I didn't think of options at the time, > I could have used something to communicate. Weakness made obvious > nodding and shaking my head impossible. And I'm really interested to > see if the ability to speak was lost, but I could write. Any stories > of similar experiences would help me out a lot. > > Take care, > RH > > > > > > >> >>> >>> >>> >>> >>> We saw Dr Hersh yesterday.He feels that most of the problems > she >>> is having are due to more neurological involvement.He also > does >>> not want to change the Depakote,we've had so much trouble > with the >>> other seizure meds.We'll just keep a check on the level and > liver >>> function.He did want us to get a cooling blanket,she has some >>> trouble regulating body temp.Also wants us to try a precussion >>> vest,we tried the massager but she had such fit everytime we > did >>> it that I finally gave up. has some real spacial issues > and >>> telling her she's not falling is a waste of time.Hopefully if > we >>> just have to put the vest on her,she'll be allright with it.I >>> would love to at least increase her lung capacity enough for > her >>> to be able to answer yes or no questions.Right now she can't > get >>> sounds out.It's VERY flustrating for both of us,I want her to > be >>> able to tell me what she wants and she can't. >>> >>> She has been very protective of her right arm lately,he felt > she >>> showed quite a bit of resistance in her shoulder so he sent > her >>> for x-rays.I haven't heard back on those yet. >>> >>> I do think is doing better on the Dantrium,her muscles > are >>> more relaxed.She is still sleeping to much to suit me but > when she >>> is awake she seems more awake (if that makes sense).She is > still >>> not eating much,but she does have a g-tube so I shouldn't > worry >>> about that.The only thing is I don't want her to forget HOW > to eat. >>> >>> Every body is still in my prayers. >>> >>> ,Mom to >>> >>> >>> >>> Medical advice, information, opinions, data and statements > contained >>> herein are not necessarily those of the list moderators. The > author of >>> this e mail is entirely responsible for its content. List members > are >>> reminded of their responsibility to evaluate the content of the >>> postings and consult with their physicians regarding changes in > their >>> own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who > sends >>> one is automatically moderated or removed depending on the > severity of >>> the attack. >>> >>> >>> >>> ------------------------------------------------------------------ > ------ >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 This is one system, but there is another one that is a bit more discriptive (more visually similar to the actual thing). Some words are hard to make symbols for and have them be realistic, but I have found that you can get the meaning without these words. laurie > > Reply-To: > Date: Fri, 30 Jan 2004 16:28:46 -0800 > To: > Subject: Re: update > > > > > > Like this? > > > > Laureta Fitzgerald wrote: > >> RH >> >> There is a universal symbol language if one can see well enough to see the >> symbols. You can produce the symbols in various sizes and in any combination >> of symbols. They can be simple ones like yes, no, eat, bathroom, drink, pain >> on a single board or very complex with many pages in a notebook. These are >> the symbols that are using used on communication devices. I use them with >> autistic students. Another thing I use is to take pictures of the person, >> doing a particular activity such as drinking and then put them together on a >> board or book. This is more concrete. The symbol system is the Bliss Symbol >> or Universal Symbols, such as the handicapped symbol, ladies room symbol, >> etc. >> >> I'm not sure if I have the symbol system to produce all the symbols on my >> computer at school or not. I know I have a sign language program, but may >> have taken the symbol one off as it took a lot of memory. >> >> laurie >> >> >> >>> >>> Reply-To: >>> Date: Fri, 30 Jan 2004 23:33:33 -0000 >>> To: >>> Subject: Re: update >>> >>> I have had some episodes of not speaking, and someone suggested >>> carrying pen and paper. Can you get a write-on/wipe-off board, maybe >>> the size of a sheet of paper, and she could write on that maybe? >>> >>> Another idea is to buy a kid's scratch pad, the kind with a gray >>> plastic sheet over a black waxy board, that the pen pushes on to >>> write. Then the sheet is lifted to erase it. >>> >>> It's really frustrating for me when I can't talk, and my mom went >>> through 6 months of that, and we weren't even thinking about ideas on >>> how to help her communicate. Any potential for using a computer >>> (change font size to real big if there is a vision issue)? >>> >>> How about really simple things, like a traffic light with a green >>> light for " YES " and a traffic light with a red light for " NO " ? >>> >>> I am totally interested in this issue, because I've dealt with this >>> myself, and feel that although I didn't think of options at the time, >>> I could have used something to communicate. Weakness made obvious >>> nodding and shaking my head impossible. And I'm really interested to >>> see if the ability to speak was lost, but I could write. Any stories >>> of similar experiences would help me out a lot. >>> >>> Take care, >>> RH >>> >>> >>> >>> >>> >>> >>>> >>>> >>>> >>>>> >>>>> >>>>> We saw Dr Hersh yesterday.He feels that most of the problems >>>>> >>>>> >>> she >>> >>> >>>>> is having are due to more neurological involvement.He also >>>>> >>>>> >>> does >>> >>> >>>>> not want to change the Depakote,we've had so much trouble >>>>> >>>>> >>> with the >>> >>> >>>>> other seizure meds.We'll just keep a check on the level and >>>>> >>>>> >>> liver >>> >>> >>>>> function.He did want us to get a cooling blanket,she has some >>>>> trouble regulating body temp.Also wants us to try a precussion >>>>> vest,we tried the massager but she had such fit everytime we >>>>> >>>>> >>> did >>> >>> >>>>> it that I finally gave up. has some real spacial issues >>>>> >>>>> >>> and >>> >>> >>>>> telling her she's not falling is a waste of time.Hopefully if >>>>> >>>>> >>> we >>> >>> >>>>> just have to put the vest on her,she'll be allright with it.I >>>>> would love to at least increase her lung capacity enough for >>>>> >>>>> >>> her >>> >>> >>>>> to be able to answer yes or no questions.Right now she can't >>>>> >>>>> >>> get >>> >>> >>>>> sounds out.It's VERY flustrating for both of us,I want her to >>>>> >>>>> >>> be >>> >>> >>>>> able to tell me what she wants and she can't. >>>>> >>>>> She has been very protective of her right arm lately,he felt >>>>> >>>>> >>> she >>> >>> >>>>> showed quite a bit of resistance in her shoulder so he sent >>>>> >>>>> >>> her >>> >>> >>>>> for x-rays.I haven't heard back on those yet. >>>>> >>>>> I do think is doing better on the Dantrium,her muscles >>>>> >>>>> >>> are >>> >>> >>>>> more relaxed.She is still sleeping to much to suit me but >>>>> >>>>> >>> when she >>> >>> >>>>> is awake she seems more awake (if that makes sense).She is >>>>> >>>>> >>> still >>> >>> >>>>> not eating much,but she does have a g-tube so I shouldn't >>>>> >>>>> >>> worry >>> >>> >>>>> about that.The only thing is I don't want her to forget HOW >>>>> >>>>> >>> to eat. >>> >>> >>>>> Every body is still in my prayers. >>>>> >>>>> ,Mom to >>>>> >>>>> >>>>> >>>>> Medical advice, information, opinions, data and statements >>>>> >>>>> >>> contained >>> >>> >>>>> herein are not necessarily those of the list moderators. The >>>>> >>>>> >>> author of >>> >>> >>>>> this e mail is entirely responsible for its content. List members >>>>> >>>>> >>> are >>> >>> >>>>> reminded of their responsibility to evaluate the content of the >>>>> postings and consult with their physicians regarding changes in >>>>> >>>>> >>> their >>> >>> >>>>> own treatment. >>>>> >>>>> Personal attacks are not permitted on the list and anyone who >>>>> >>>>> >>> sends >>> >>> >>>>> one is automatically moderated or removed depending on the >>>>> >>>>> >>> severity of >>> >>> >>>>> the attack. >>>>> >>>>> >>>>> >>>>> ------------------------------------------------------------------ >>>>> >>>>> >>> ------ >>> >>> >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Laurie, I don't think that is mentally able to learn even simple sign language. One thing I had not thought about though ,she shakes her bed rails to get my attention,if I can get her to shake the left rail for yes and the right rail for no we would be in business.I'm going to work on this idea. Thanks for the suggestions. ,Mom to update > > > > > > > > > > We saw Dr Hersh yesterday.He feels that most of the problems she is having are > > due to more neurological involvement.He also does not want to change the > > Depakote,we've had so much trouble with the other seizure meds.We'll just keep > > a check on the level and liver function.He did want us to get a cooling > > blanket,she has some trouble regulating body temp.Also wants us to try a > > precussion vest,we tried the massager but she had such fit everytime we did it > > that I finally gave up. has some real spacial issues and telling her > > she's not falling is a waste of time.Hopefully if we just have to put the vest > > on her,she'll be allright with it.I would love to at least increase her lung > > capacity enough for her to be able to answer yes or no questions.Right now she > > can't get sounds out.It's VERY flustrating for both of us,I want her to be > > able to tell me what she wants and she can't. > > > > She has been very protective of her right arm lately,he felt she showed quite > > a bit of resistance in her shoulder so he sent her for x-rays.I haven't heard > > back on those yet. > > > > I do think is doing better on the Dantrium,her muscles are more > > relaxed.She is still sleeping to much to suit me but when she is awake she > > seems more awake (if that makes sense).She is still not eating much,but she > > does have a g-tube so I shouldn't worry about that.The only thing is I don't > > want her to forget HOW to eat. > > > > Every body is still in my prayers. > > > > ,Mom to > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 That sounds like a great idea, my son is communication impaired, and it's really difficult for him to convey what he wants, especially when he is upset. We use demonstrations a lot (even when silly) and waving hands like a ref in a football game for " no good " on a field goal. It is difficult for us to get his attention even sometimes. How about puppets or stuffed animals with happy and sad (or mad) faces? She could just hold up or shake the one for yes " happy " and no " sad or mad " . I should look around for some for us. Take care, RH > Laurie, > I don't think that is mentally able to learn even simple sign > language. > One thing I had not thought about though ,she shakes her bed rails to get my > attention,if I can get her to shake the left rail for yes and the right rail > for no we would be in business.I'm going to work on this idea. > Thanks for the suggestions. > ,Mom to > update > > > > > > > > > > > > > > > We saw Dr Hersh yesterday.He feels that most of the problems she is > having are > > > due to more neurological involvement.He also does not want to change the > > > Depakote,we've had so much trouble with the other seizure meds.We'll > just keep > > > a check on the level and liver function.He did want us to get a cooling > > > blanket,she has some trouble regulating body temp.Also wants us to try a > > > precussion vest,we tried the massager but she had such fit everytime we > did it > > > that I finally gave up. has some real spacial issues and telling > her > > > she's not falling is a waste of time.Hopefully if we just have to put > the vest > > > on her,she'll be allright with it.I would love to at least increase her > lung > > > capacity enough for her to be able to answer yes or no questions.Right > now she > > > can't get sounds out.It's VERY flustrating for both of us,I want her to > be > > > able to tell me what she wants and she can't. > > > > > > She has been very protective of her right arm lately,he felt she showed > quite > > > a bit of resistance in her shoulder so he sent her for x-rays.I haven't > heard > > > back on those yet. > > > > > > I do think is doing better on the Dantrium,her muscles are more > > > relaxed.She is still sleeping to much to suit me but when she is awake > she > > > seems more awake (if that makes sense).She is still not eating much,but > she > > > does have a g-tube so I shouldn't worry about that.The only thing is I > don't > > > want her to forget HOW to eat. > > > > > > Every body is still in my prayers. > > > > > > ,Mom to > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of this > e mail is entirely responsible for its content. List members are reminded of > their responsibility to evaluate the content of the postings and consult > with their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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