Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 <<, I have no usable vision on the left just shadows...I know the doctor's hand is waving but cannot distinguish how many fingers. My right eye has near perfect distance vision and minimal close...I use ZoomText on the computer and will have to resort to something in the near future for reading books. I also have what has been called crowding effect so reading a word or two at a time helps. My vision also tilts to the left and soon after the ci surgery I lost color perception...am I legally blind, I doubt it but it certainly sucks! It is thought that this combined with the deafness contributes greatly to my balance problems.>> Hi Debra, I understand exactly what you " see " in your left eye. On a very bright sunny day I have shadow vision but it wasn't enough to help me really see anything. I'm familiar with ZoomText...a friend of mine uses it on her computer. As far as reading books, depending on how easy it is for you to read, perhaps you could get a closed circuit television (CCTV) which can enlarge print up to 60X. Legal blindness (in the U.S.) is defined as best corrected vision of 20/200 in both eyes or a visual field of 10 degrees or less. From your description, it doesn't sound as if you are legally blind, but you are visually impaired. I can emphasize with you about how frustrating it is to live with a dual sensory loss. When I started losing my hearing in 1995, everything in my life was 110% more difficult than it was when I was only blind. I prayed day after day that God would restore my hearing. Not only was it frustrating trying to function on a day to day basis, it was also quite frightening too. The thought of losing my music -- something I had loved since age 7 -- was devastating. I haven't told many people this, but I went through a serious depression for a few years. It wasn't until I started learning tactile sign and other alternative communication techniques that I felt my world starting to open up a little. I can't believe how much my life has changed between then and now! If you ever need any techniques to help you around the house, etc. I'd be happy to share them. I have all kinds of techniques that fully sighted people have found helpful and efficient. Surgery date: 12/22/04 (18 days and counting!) Activation date: 1/18/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Dear , Its actually " having a central visual acuity of 20/200 in the better eye with best corrective lens, or a visual field of 20 degrees or less. Dont we make wonderful partners? LOL I need a mocha, want one? *---* *---* *---* *---* *---* Ever consider what our dogs must think of us? I mean, here we come back from a grocery store with the most amazing haul -- chicken, pork, half a cow. They must think we're the greatest hunters on earth! -- Anne Tyler & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , The definition I gave was the one I heard regularly by my opthalmologist -- although I couldn't remember the degree of visual field. And yes, we do make a great team! What would we do without each other? <smile> Surgery date: 12/22/04 (18 days and counting!) Activation date: 1/18/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , Then that doc needs to get updated. LOL I dont know what I woudl do without you. I am making brownies now, just to have an excuse to turn the oven on. LOL (think she wants some. she can have some. hurry is the key word tho!) *---* *---* *---* *---* *---* Time flies like an arrow. Fruit flies like a banana. --Anonymous & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 In a message dated 12/4/2004 8:18:28 PM Pacific Standard Time, rlclark77@... writes: Me bake for 800+ people? I'd have to be outa my gourd to do that! why not,, while at it,, i must have missed something,, have you move yet and open a bakery? Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , I thought 20 degrees or less was the legal criteria for peripheral fields. Re: and > > <<, I have no usable vision on the left just shadows...I know the > doctor's hand is waving but cannot distinguish how many fingers. My right > eye has near perfect distance vision and minimal close...I use ZoomText on > the computer and will have to resort to something in the near future for > reading books. I also have what has been called crowding effect so reading > a word or two at a time helps. My vision also tilts to the left and soon > after the ci surgery I lost color perception...am I legally blind, I doubt > it but it certainly sucks! It is thought that this combined with the > deafness contributes greatly to my balance problems.>> > > Hi Debra, > > I understand exactly what you " see " in your left eye. On a very bright sunny > day I have shadow vision but it wasn't enough to help me really see > anything. I'm familiar with ZoomText...a friend of mine uses it on her > computer. As far as reading books, depending on how easy it is for you to > read, perhaps you could get a closed circuit television (CCTV) which can > enlarge print up to 60X. > > Legal blindness (in the U.S.) is defined as best corrected vision of 20/200 > in both eyes or a visual field of 10 degrees or less. From your description, > it doesn't sound as if you are legally blind, but you are visually impaired. > > I can emphasize with you about how frustrating it is to live with a dual > sensory loss. When I started losing my hearing in 1995, everything in my > life was 110% more difficult than it was when I was only blind. I prayed day > after day that God would restore my hearing. Not only was it frustrating > trying to function on a day to day basis, it was also quite frightening too. > The thought of losing my music -- something I had loved since age 7 -- was > devastating. I haven't told many people this, but I went through a serious > depression for a few years. It wasn't until I started learning tactile sign > and other alternative communication techniques that I felt my world starting > to open up a little. I can't believe how much my life has changed between > then and now! > > If you ever need any techniques to help you around the house, etc. I'd be > happy to share them. I have all kinds of techniques that fully sighted > people have found helpful and efficient. > > > Surgery date: 12/22/04 (18 days and counting!) > Activation date: 1/18/05 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , where's my brownie?! Re: and > > , > Then that doc needs to get updated. LOL I dont know what I woudl do > without you. I am making brownies now, just to have an excuse to turn the > oven on. LOL > > (think she wants some. she can have some. hurry is the key word tho!) > *---* *---* *---* *---* *---* > Time flies like an arrow. > Fruit flies like a banana. > --Anonymous > & Gimlet (Guide Dawggie) > Portland, Oregon > N24C 3G 8/2000 Hookup > rlclark77@... > http://home.comcast.net/~rlclark77/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , Brownies are right here in the pan, want some? Come on over! Going fast! And I am going to be bouncing off the walls in a few! LOL *---* *---* *---* *---* *---* If you think dogs can't count, try putting three dog biscuits in your pocket and then giving Fido only two of them. -- Phil Pastoret & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , You're right. I'm not sure why I thought it was 10 degrees or less. Surgery date: 12/22/04 (18 days and counting!) Activation date: 1/18/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , Do you have any more brownies left? It's been a long day and I'm hungry!! , who can't wait to see bouncing off the walls. LOL! Surgery date: 12/22/04 (18 days and counting!) Activation date: 1/18/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , Still some left! Hurry! I would love to share with you! But, hey Wait! A! Minute! Me bake for 800+ people? I'd have to be outa my gourd to do that! The thought alone makes me want to sleep for the next 5 years! I did make turtle brownies earlier this year and they were a success! *---* *---* *---* *---* *---* Don't worry. I forgot your name too. & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Oooooooooooops not fair! Two 's ganging up on me is enough to confuse the cotton outa me! (runs to Gimlet for comfort) *---* *---* *---* *---* *---* Not one shred of evidence supports the notion that life is serious. & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Lee, Ita bad enough baking for 20 people let alone 800. You try it, I want to watch! LOL Havent moved yet, waiting for an apartment. Probably wont open a bakery, tho am not closing the door on that. Getting a partner might help. LOL *---* *---* *---* *---* *---* For those who think they know it all, should ask those who do Know it all, when you do, let me know and I will show that They Don't Know It all! --Hobo's Probverb & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 But Snoopy that wont leave me time for.... well, yuh know, uhm, I mean, errrrrrr..... LOL *---* *---* *---* *---* *---* " Whenever I feel blue, I start breathing again. " --Larry Baum & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Hey How about baking brownies for 800+ members of ? That would be your Christmas and Hanukah gift to us!!! Snoopy PS you have me hankering for a batch of turtle brownies. Re: and , Brownies are right here in the pan, want some? Come on over! Going fast! And I am going to be bouncing off the walls in a few! LOL *---* *---* *---* *---* *---* If you think dogs can't count, try putting three dog biscuits in your pocket and then giving Fido only two of them. -- Phil Pastoret & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/<http://home.comcast.net/~rlclark77/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 -- baking for all of us will keep you and from bouncing off the walls. LOL Snoopy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , That won't leave you time for what? Or do I already know?? <grinning> Surgery date: 12/22/04 (18 days and counting!) Activation date: 1/18/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , If you can bake brownies for over 800 people, I'd say you're ready to open up your own bakery. <grin> Now how about it? Think you're up for the challenge? LOL! Surgery date: 12/22/04 (18 days and counting!) Activation date: 1/18/05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 , I sorta think you know already. LOL Now as to baking for 800? Are you going to helo me? Do you want to be my partner? Gimlet and Tigger can do their share too. LOL *---* *---* *---* *---* *---* Do not walk behind me, for I may not lead. Do not walk ahead of me, for I may not follow. Do not walk beside me, either; just leave me the hell alone. & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 and Telly to the rescue. Want that Turtle brownie. Re: and > > Oooooooooooops not fair! Two 's ganging up on me is enough to > confuse the cotton outa me! > > (runs to Gimlet for comfort) > *---* *---* *---* *---* *---* > Not one shred of evidence supports the notion that life is serious. > & Gimlet (Guide Dawggie) > Portland, Oregon > N24C 3G 8/2000 Hookup > rlclark77@... > http://home.comcast.net/~rlclark77/ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 and Telly come get it.... give and Gimlet about 2 months notice. LOL Hmmmmm, I think Turtle Brownies sound good myself, not gonna share. LOL *---* *---* *---* *---* *---* OK, so what's the speed of dark? -- & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 The Pampers First Steps are awesome. They start at 16 pounds. But they have worked wonders and are so so much easier then normal diapers with the tabs. Thanks for the info Jen. I have tried the hydrocortizone. No help. And I the medicated powder worked for a day. And now it is even worse. I will look for the stuff you were talking about. Its like he has exema all over his lower back. Jen and Mason <jenstewart73@...> wrote: Now that Madison is back in a brace, I remember how to easily diaper in this situation. Without taking the brace off everytime. Pampers makes "First Steps" diapers. They are essentially a pull up for babies (I think they atart at 11 lbs). You can rip the sides open to remove a soiled diaper and then just pull up the new one. While Madison is laying down I tuck in the front and sides under the brace as best as possible. I then turn her over my knee and tuck the back up. I seem to be able to get it flat each time without any problems. If you do have an accident, you can clean the inside of the brace with rubbing alcohol and the outside with just about anything as long as you rinse it really well. As for skin irritation and itching, I use 0.5% hydrocortizone cream and Eucerin calming creme. Both are OTC and can be found pretty easily. DO NOT put the hydrocortizone cream on any areas that are bleeding. I like Biafine WDE (wound dressing emulsion) for those spots. This stuff is a little more difficult to locate. I have to either drive to San to get it, or order it online. Hopefully you'll be able to find it if you live in or near a large city. I find itat speciality pharmacies and wound care clinics mostly. I wish you the best of luck and this helps you out a little. Jenmichelle chan <mechelle030171@...> wrote: Hi Tawney Thanks for the info we are trying to get Bryson seen by someone who will cast him now but have not gotten an appointment anywhere yet. I called Shriners in erie and they are sending some paperwork in the mail where do you live? what Dodctor did you see? did you have to force the casting? Oh are your twins identical or fraternal? Ashton & Bryson are identical and had Twin to twin transfusion sydrome which is one of the reasons for their eary delivery. any information on why 1 twin has scoliosis and 1 does not?? thanks for you help Tawney on <tawney_morrison@...> wrote: Hi , I am also a mother of twins, one with scoliosis. My twins were also two months premature. Neither of my twins sat up on their own until about nine months. They had their adjusted age too. We did not detect my son Tylers scoliosis until 13 months old. He was in the high 20's and progressed to 49 degrees in two in a half months. At that time he was put in his first cast. He is now 3 1/2 years old and was just put in his sixth cast last week. He has been in and out of casts and braces the last couple years. When Tyler was put in his first series of casts he was taken out prematurely and his curve went up. Unfortuately he has not been left in the cast until he is straight or I feel like he would have been done by now. He is now 13 degrees out of the cast and 8 degrees in. He has held his curve at 13 degrees since December and our doctor agreed to put him in one more to try to get him down then to try the bracing again. My experience is that Tyler does much better in the casts than the braces. The brace comes on and off so behavior becomes and issue and they don't seem to be as comfortable. His curve has only corrected in the cast, never in the brace. He is the same heigth as his identical twin and has hit all his mile stones at the same time. If you have any questions I would love to talk with you. I know this is a scary time and it is hard to decide what to do. You can email me if you want to talk. Take Care and Good Luck. Tawney <mechelle030171@...> wrote: Hi everyone wanted to update you all on my son Bryson he is 6 mos and 2 weeks old. He had his MRI last week and it came back all clearHe got his brace on friday (TLSO) he has been wearing it 24 hrs a day off only for bath time and I have to take it off at every diaper change which is a huge pain but we are manageing.He seems to be ok with wearing it but he cries everytime I have to put it back on him after his diaper change.Bryson was born 2 mos early (he is a twin) and he does not sit up or roll over yet so the brace has not changed his daily routine much I am hopeing that he will still learn to sit up and roll over like he is supposed to. (he has an adjusted age of 4 mos for developmental stuff and his twin does not sit up or roll over yet either)I am not sure if this brace will work for him and I have decided to contact some other Docters to get some other opinions on what the best treatment plan would be. I am now trying to decide which Dr. would be the best one for us. any suggestions would be appreciated. We live in Indiana and are moving to PA end of August. Start your day with - make it your home page __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2005 Report Share Posted July 25, 2005 Jen,How is Madison doing in the brace?  She was in a cast for awhile, right?  I'm sorry but I've forgotten all of her details. Has it been an easy transition?  What does her brace look like?  I'm sorry for all of the questions, but I believe that you are one of the first families that casting has been successful (still crossing my fingers!).  Here in the U.S., I mean.  Could you remind me how long she was in a cast for and what her curves and RVADs were? I need encouragment!Thanks,DesheaOn Jul 23, 2005, at 12:41 AM, wrote: Now that Madison is back in a brace, I remember how to easily diaper in this situation. Without taking the brace off everytime. Pampers makes "First Steps" diapers. They are essentially a pull up for babies (I think they atart at 11 lbs). You can rip the sides open to remove a soiled diaper and then just pull up the new one. While Madison is laying down I tuck in the front and sides under the brace as best as possible. I then turn her over my knee and tuck the back up. I seem to be able to get it flat each time without any problems. If you do have an accident, you can clean the inside of the brace with rubbing alcohol and the outside with just about anything as long as you rinse it really well.     As for skin irritation and itching, I use 0.5% hydrocortizone cream and Eucerin calming creme. Both are OTC and can be found pretty easily. DO NOT put the hydrocortizone cream on any areas that are bleeding. I like Biafine WDE (wound dressing emulsion) for those spots. This stuff is a little more difficult to locate. I have to either drive to San to get it, or order it online. Hopefully you'll be able to find it if you live in or near a large city. I find itat speciality pharmacies and wound care clinics mostly.       I wish you the best of luck and this helps you out a little.  Jenmichelle chan <mechelle030171@...> wrote: Hi Tawney  Thanks for the info we are trying to get Bryson seen by someone who will cast him now but have not gotten an appointment anywhere yet. I called Shriners in erie and they are sending some paperwork in the mail where do you live? what Dodctor did you see? did you have to force the casting? Oh are your twins identical or fraternal?  Ashton & Bryson are identical and had Twin to twin transfusion sydrome which is one of the reasons for their eary delivery.  any information on why 1 twin has scoliosis and 1 does not??  thanks for you help  Tawney on <tawney_morrison@...> wrote: Hi , I am also a mother of twins, one with scoliosis. My twins were also two months premature. Neither of my twins sat up on their own until about nine months. They had their adjusted age too. We did not detect my son Tylers scoliosis until 13 months old. He was in the high 20's and progressed to 49 degrees in two in a half months. At that time he was put in his first cast. He is now 3 1/2 years old and was just put in his sixth cast last week. He has been in and out of casts and braces the last couple years. When Tyler was put in his first series of casts he was taken out prematurely and his curve went up. Unfortuately he has not been left in the cast until he is straight or I feel like he would have been done by now. He is now 13 degrees out of the cast and 8 degrees in. He has held his curve at 13 degrees since December and our doctor agreed to put him in one more to try to get him down then to try the bracing again. My experience is that Tyler does mu! ch better in the casts than the braces. The brace comes on and off so behavior becomes and issue and they don't seem to be as comfortable. His curve has only corrected in the cast, never in the brace. He is the same heigth as his identical twin and has hit all his mile stones at the same time. If you have any questions I would love to talk with you. I know this is a scary time and it is hard to decide what to do. You can email me if you want to talk. Take Care and Good Luck. Tawney <mechelle030171@...> wrote: Hi everyone wanted to update you all on my son Bryson he is 6 mos and 2 weeks old. He had his MRI last week and it came back all clearHe got his brace on friday (TLSO) he has been wearing it 24 hrs a day off only for bath time and I have to take it off at every diaper change which is a huge pain but we are manageing.He seems to be ok with wearing it but he cries everytime I have to put it back on him after his diaper change.Bryson was born 2 mos early (he is a twin) and he does not sit up or roll over yet so the brace has not changed his daily routine much I am hopeing that he will still learn to sit up and roll over like he is supposed to. (he has an adjusted age of 4 mos for developmental stuff and his twin does not sit up or roll over yet either)I am not sure if this brace will work for him and I h! ave decided to contact some other Docters to get some other opinions on what the best treatment plan would be. I am now trying to decide which Dr. would be the best one for us. any suggestions would be appreciated. We live in Indiana and are moving to PA end of August. Start your day with - make it your home page __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 , I hope you figure out the stomach pain soon, we've been going through this lately with Conner too. One time was pancreatitis, that was pretty obvious, but we almost took him to the ER again last week for abdominal pain, thankfully it went away fairly quickly. Did you ever get la's blood drawn for Dr. Bleesing? I've been corresponding with him recently and he is worried about Conner's swollen lymph nodes. Conner is going to see the hem/onc again a week from tomorrow and will be getting a CT scan that day too. Dr. B said we would talk again once we get all of the results back (our ped suspects Conner has lymphoma, but the hem/onc wasn't so sure). Basically, I get the impression that Dr. B is very puzzled by Conner's medical issues, this is nothing new, every immunologist or other specialist has been puzzled too. , did you hear back from Cincy yet? Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD, immunodeficiency-SCIG, and now adrenal insufficiency), Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided), Evan (11, asthma and mild hearing loss/unaided), and Kelsey - (9 going on 19!) www.caringbridge.org/in/connersmith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2005 Report Share Posted August 18, 2005 In a message dated 8/17/2005 4:56:10 PM Pacific Standard Time, dietdoc@... writes: Barbara Ballard (head of the SCIDS group) once said that the average time it takes to properly " diagnose " an individual with an immune deficiency can be 8 years! This is way too long and I know that we can do better. I find it so difficult to do that " masterful monitoring " or " watchful waiting " thing when my mommy instincts (and forced medical education) tell me otherwise. , I so agree, we can do better. I took me five years to get Bri diagnosed. I had to find an Immuno myself and fire his previous Ped!!!!!! But it was well worth it. Sandi, Mom to , age 12--CVID, Tetrology of Fallot, Pulmonary Valve transplant (2003), allergies (including meds), asthma, GERD, Carnitine deficiency--also an aspiring Doctor and Director! Quote Link to comment Share on other sites More sharing options...
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