Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Yes we did get out to sturgis, almost froze to death that morning, had waited for the rain to stop before we left for the 25 mile ride up the freeway, gotta love that 65-70 mph rides. :-) So now I can actually say I've been to STrugis, maybe not during the rally but I have been there. LOL This year we plan on trying to get to the UP in Michigan, there are evidently some really nice roads to ride up there. We were supposed to go there instead of SD but it was supposed to rain up there all that week, the only place that didn't have rain almost everyday in the forecast was SD so we went west. Joy PS I actually survided hairpin turns going up and sprials coming down them hills. YIKES. I was happy we went the way we did, since I'm not so sure how well going up a spiraling road would go for me. :-) Re: Introductions Joy, Did you go out to Sturgis? We've been stationed in SD three times with the Air Force, so I'm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 - just curious - are you the one I met on StampinandScrappin - now Scrapshare? When I first had Bethany I chatted briefly with someone from there and I wondered if it was you... your description of your daughter sounds familiar. Just wondered. Michele Introductions Hi, My name is . I have a husband Danny and one daughter-Caty. She's 14yrs.old & is a 7th grader. We live in Wild, Wonderful West Virginia. Caty has had a VSD repaired and has a Cleft Mitral Valve. Other than that she is very healthy. We've been in puberty for about 3 years now. I still don't understand why everything in her life has come late-teeth, reading, pottying,etc. but puberty came early! Caty was included in regular classes for the beginning of her school years but as she has gotten older, she has been pulled out much more during the day. This is what worked for her. She gets speech everyday,but her speech is still for the mostpart unintelligible. She uses sign language a lot. Caty is in the band (percussion) and is the manager for the girls' basketball team. She loves TV and videos, playing hair stylist, and coloring books. My husband is on strike from a local plant right now (hope that's over soon!), I'm a substitute teacher's aide, Creative Memories Consultant and recently became our County's Special Olympics Director. (yes, I need a few more responsibilities.) I'm glad we're all reintroducing ourselves.... ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 - just curious - are you the one I met on StampinandScrappin - now Scrapshare? When I first had Bethany I chatted briefly with someone from there and I wondered if it was you... your description of your daughter sounds familiar. Just wondered. Michele Introductions Hi, My name is . I have a husband Danny and one daughter-Caty. She's 14yrs.old & is a 7th grader. We live in Wild, Wonderful West Virginia. Caty has had a VSD repaired and has a Cleft Mitral Valve. Other than that she is very healthy. We've been in puberty for about 3 years now. I still don't understand why everything in her life has come late-teeth, reading, pottying,etc. but puberty came early! Caty was included in regular classes for the beginning of her school years but as she has gotten older, she has been pulled out much more during the day. This is what worked for her. She gets speech everyday,but her speech is still for the mostpart unintelligible. She uses sign language a lot. Caty is in the band (percussion) and is the manager for the girls' basketball team. She loves TV and videos, playing hair stylist, and coloring books. My husband is on strike from a local plant right now (hope that's over soon!), I'm a substitute teacher's aide, Creative Memories Consultant and recently became our County's Special Olympics Director. (yes, I need a few more responsibilities.) I'm glad we're all reintroducing ourselves.... ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 HI! I am Roxanne....recently became a single mom. Mother to Faith 7-29-98 DS, adhd, complete aval canal and Ebony Joy 12-12--99 Boston MA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 HI! I am Roxanne....recently became a single mom. Mother to Faith 7-29-98 DS, adhd, complete aval canal and Ebony Joy 12-12--99 Boston MA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 I'm Rick, husband to (36 + years) and dad to (34), Jan (31 and with ds), and Steve (30). I've been around on this listserv since it started although sometimes I tune out because life gets too busy. I am still working (past usual retirement age) on technologies to make better disk drives for your computers. I am with Hitachi (formerly IBM) in California. My wife is a physician in Danbury, CT. We plan to get together in California as soon as I get the historic house restored (still in late planning stages) and we figure out how to deal with her job (easy), Jan (a little harder), and my 92 year old mother-in-law (hard). Jan is part of the crop of young adults who were the first to get real education. She attended open sped classes in public school that had good contact with the general population but the individual attention to teach her to her maximum capability. She attended a post high school program at Chapel Haven and is currently living in her own apartment in the Chapel Haven graduate community which surrounds the school. Her brothers both work with computers. is involved with computer games (the entertainment world) and is moving to a new job in Boston shortly. Steve works in computer search R & D for IBM. I am watching Jan and her peers as they ease into adulthood. It is taking them a while, but that's hardly unexpected. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 I'm Rick, husband to (36 + years) and dad to (34), Jan (31 and with ds), and Steve (30). I've been around on this listserv since it started although sometimes I tune out because life gets too busy. I am still working (past usual retirement age) on technologies to make better disk drives for your computers. I am with Hitachi (formerly IBM) in California. My wife is a physician in Danbury, CT. We plan to get together in California as soon as I get the historic house restored (still in late planning stages) and we figure out how to deal with her job (easy), Jan (a little harder), and my 92 year old mother-in-law (hard). Jan is part of the crop of young adults who were the first to get real education. She attended open sped classes in public school that had good contact with the general population but the individual attention to teach her to her maximum capability. She attended a post high school program at Chapel Haven and is currently living in her own apartment in the Chapel Haven graduate community which surrounds the school. Her brothers both work with computers. is involved with computer games (the entertainment world) and is moving to a new job in Boston shortly. Steve works in computer search R & D for IBM. I am watching Jan and her peers as they ease into adulthood. It is taking them a while, but that's hardly unexpected. Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 lol kim we are sweating here in COneecticut and it's 50 Happy New Year!!! wife to Ron mom April 16 Alyssa 11 and joshie w ds at 2 almost 3 Kim kanan <kim_kanan@...> wrote: I'm comming in on these introduction kind of late - sorry - I've been busy at the hospital. I was not able to read all my email as there were too many. I believe everyone is introducing and reintroducing themselves. It's been nice reading about every one. My name is Kim Kanan. I am a stay at home mother of 4 children. 5 year old twins (Ali and Jennah), 3 year old son Noah and my 11 month old Reiyan (with DS). Reiyan is a 27 week old preemie and has many complication due to being so early. He has lung, heart, ear, and GI issues. It is tough determining which problem is due to his prematurity and which is due to his DS. I guess it does not matter much since the corrective procedure is all the same. I just get so curious. His Heart - PDA and ASD. His PDA was almost healed through the use of indicen but on the 4th of July weekend he has Conjenital Heart Failure - they stablized him and 3 days later had Open Heart Surgery where they repaired his ASD and pinched his PDA. His Lungs - He has Pulmonary Hypertention, Pulmonary Hypoplasia, Aterial Sclorosis, and CLD (Cronic Lung Disease). Arteries - Besides his Arterial Sclorosis - his artery that goes into his right arm starts out going left. It then U-turns back going around his esophagus and then to his right arm. They said this may cause difficulty swallowing but so far he is fine. GI - He had Failure to thrive caused by a combination of Reflux (he has it bad) and his heart and lung condition causing him to work too hard. Not only was he burning all the calories that he would take in but he'd also throw up the entire amount every feed. They have now done a Nissen Fundoplycation (wrapping the stomache around the esophagus so that he can not throw up) and put in a g-tube - both which are working well for us. His ear canals are completely closed and he is 50% deaf in one ear and 75% deaf in the other (good thing I know sign - my niece is 100% deaf). His tear ducts are also clogged. Of course he has sever hypotonia and is just starting to roll to his tummy but his arms get stuck under him. I'm not sure if he is so delayed because of his DS or becasue he has been in the hospital bed ridden so much. I'm sure there is more but that is the gist of his condition. My twins are perfectly healthy and rarely see the doc and my 3 year old had bad alergies which causes him Asthma. And he also has Reflux. That is what we were in the hospital for is his ph study to see how bad his reflux is - no results yet. We live in sothern CA were we are freezing today becasue it is 60 degrees. It is time for the sherling coats in the house with the heater on!! Snowman???? What is that???? Take care and nice meeting all of you. Kim, Reiyan's mom __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 lol kim we are sweating here in COneecticut and it's 50 Happy New Year!!! wife to Ron mom April 16 Alyssa 11 and joshie w ds at 2 almost 3 Kim kanan <kim_kanan@...> wrote: I'm comming in on these introduction kind of late - sorry - I've been busy at the hospital. I was not able to read all my email as there were too many. I believe everyone is introducing and reintroducing themselves. It's been nice reading about every one. My name is Kim Kanan. I am a stay at home mother of 4 children. 5 year old twins (Ali and Jennah), 3 year old son Noah and my 11 month old Reiyan (with DS). Reiyan is a 27 week old preemie and has many complication due to being so early. He has lung, heart, ear, and GI issues. It is tough determining which problem is due to his prematurity and which is due to his DS. I guess it does not matter much since the corrective procedure is all the same. I just get so curious. His Heart - PDA and ASD. His PDA was almost healed through the use of indicen but on the 4th of July weekend he has Conjenital Heart Failure - they stablized him and 3 days later had Open Heart Surgery where they repaired his ASD and pinched his PDA. His Lungs - He has Pulmonary Hypertention, Pulmonary Hypoplasia, Aterial Sclorosis, and CLD (Cronic Lung Disease). Arteries - Besides his Arterial Sclorosis - his artery that goes into his right arm starts out going left. It then U-turns back going around his esophagus and then to his right arm. They said this may cause difficulty swallowing but so far he is fine. GI - He had Failure to thrive caused by a combination of Reflux (he has it bad) and his heart and lung condition causing him to work too hard. Not only was he burning all the calories that he would take in but he'd also throw up the entire amount every feed. They have now done a Nissen Fundoplycation (wrapping the stomache around the esophagus so that he can not throw up) and put in a g-tube - both which are working well for us. His ear canals are completely closed and he is 50% deaf in one ear and 75% deaf in the other (good thing I know sign - my niece is 100% deaf). His tear ducts are also clogged. Of course he has sever hypotonia and is just starting to roll to his tummy but his arms get stuck under him. I'm not sure if he is so delayed because of his DS or becasue he has been in the hospital bed ridden so much. I'm sure there is more but that is the gist of his condition. My twins are perfectly healthy and rarely see the doc and my 3 year old had bad alergies which causes him Asthma. And he also has Reflux. That is what we were in the hospital for is his ph study to see how bad his reflux is - no results yet. We live in sothern CA were we are freezing today becasue it is 60 degrees. It is time for the sherling coats in the house with the heater on!! Snowman???? What is that???? Take care and nice meeting all of you. Kim, Reiyan's mom __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 Hi all, I'm Donna and I have 3 boys, ages 16, 13 and 10. Nick is my 10 y/o with DS. He had heart surgery to repair an AV canal at 4 months, but has otherwise been healthy (knock on wood!). He is included in third grade, and his biggest challege is speech. We live in Western NY. I post occasionally, but enjoy reading all of the posts and have learned a lot from everyone. Donna Introductions Since things have been quiet, let's do introductions again. For those who haven't been here when it's been done, you can introduce your whole family with a blurb about each one. You can also give your location - and please include your child with DS's medical issues - others may be lurking and prefer private emailing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2005 Report Share Posted January 1, 2005 Hi all, I'm Donna and I have 3 boys, ages 16, 13 and 10. Nick is my 10 y/o with DS. He had heart surgery to repair an AV canal at 4 months, but has otherwise been healthy (knock on wood!). He is included in third grade, and his biggest challege is speech. We live in Western NY. I post occasionally, but enjoy reading all of the posts and have learned a lot from everyone. Donna Introductions Since things have been quiet, let's do introductions again. For those who haven't been here when it's been done, you can introduce your whole family with a blurb about each one. You can also give your location - and please include your child with DS's medical issues - others may be lurking and prefer private emailing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 I'm Bob, alias Mr. Black who's to blame for everything according to Mr. Casten, alias Timbo. Haven't yet gotten through all the intros on the list, nor all of Timbo's commentaries on same. Hey, , what gives? Did you propose a round of intros 'cause Tim couldn't find enough beer to drink and football to watch and you wanted to get him out of your hair for a while? I'm married to Lynn, who occasionally posts on Down-syn but passed intro duty to me. We have 5 kids. Lynn already had 2 girls and a boy when we married. I thought the deal was that if I could put up with her and her kids, then she'd put up with me and my dog. Well, the dog died, but her kids are still here. And now we've added two little boys of our own, Charlie, http://home.earthlink.net/~wrblack/ our reason for more than a causal interest in Down syndrome, and http://home.earthlink.net/~wrblack/robertsphotoalbum/ . Both Charlie and were 30-weeker preemie's, for quite different reasons, we think. Charlie came with and extra 21st chromosome, congenital cataracts, and hypospadias. The hypospadias and undescended testicles were repaired quite well and we've dealt with the cataracts, but he's added hypothyroidism, asthma, and some flavor of pervasive developmental disorder on the autistic spectrum. Charlie is now 5 1/2 years old, attends a special ed elementary school, having finished his special ed preschool. He's not yet walking nor talking. We think we're making progress on the former, not sure about the latter. We all hang out in the Princeton, NJ, area, which seems to stretch from Philly to NYC. -- Respectfully submitted but maybe next time Lynn will want to do this, Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 I'm Bob, alias Mr. Black who's to blame for everything according to Mr. Casten, alias Timbo. Haven't yet gotten through all the intros on the list, nor all of Timbo's commentaries on same. Hey, , what gives? Did you propose a round of intros 'cause Tim couldn't find enough beer to drink and football to watch and you wanted to get him out of your hair for a while? I'm married to Lynn, who occasionally posts on Down-syn but passed intro duty to me. We have 5 kids. Lynn already had 2 girls and a boy when we married. I thought the deal was that if I could put up with her and her kids, then she'd put up with me and my dog. Well, the dog died, but her kids are still here. And now we've added two little boys of our own, Charlie, http://home.earthlink.net/~wrblack/ our reason for more than a causal interest in Down syndrome, and http://home.earthlink.net/~wrblack/robertsphotoalbum/ . Both Charlie and were 30-weeker preemie's, for quite different reasons, we think. Charlie came with and extra 21st chromosome, congenital cataracts, and hypospadias. The hypospadias and undescended testicles were repaired quite well and we've dealt with the cataracts, but he's added hypothyroidism, asthma, and some flavor of pervasive developmental disorder on the autistic spectrum. Charlie is now 5 1/2 years old, attends a special ed elementary school, having finished his special ed preschool. He's not yet walking nor talking. We think we're making progress on the former, not sure about the latter. We all hang out in the Princeton, NJ, area, which seems to stretch from Philly to NYC. -- Respectfully submitted but maybe next time Lynn will want to do this, Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Guilty. Lynn suggested we take a photo of me with our mouse on my shoulder, me sitting in front of computer with very hostile expression, and send it to Tim. Actually, I think I picked up on http://www.adoptamouse.com/ <http://www.adoptamouse.com> from something posted to Uno Mas several weeks ago and just shared it with Down-syn and . Just shows to go you, once again no good deed goes unpunished. -- Bob, may God forbid I'm now going to be known as the " mouse-guy " p.s. But did mention Adoptamouse to president of local support group. She said she'd always wondered what the real Down syndrome model mice looked like. So, me, I sent her this: Here's a link to that Adopt a Mouse program: <http://www.adoptamouse.com/> http://www.adoptamouse.com/ There are pictures of the kids who started this and pictures of the little stuffed mouse. But doesn't throw any light on what the real laboratory Down syndrome knock out mice look like. But, totally unrelated, well, almost totally, here's a link to a photo of a real Down syndrome mouse, <http://www.jax.org/cyto/mice.html> http://www.jax.org/cyto/mice.html and here's a link to a description of this mouse model <http://jaxmice.jax.org/jaxmice-cgi/jaxmicedb.cgi?objtype=pricedetail & stock= 1924> http://jaxmice.jax.org/jaxmice-cgi/jaxmicedb.cgi?objtype=pricedetail & stock=1 924 (don't know if Stanford buys their mice from labs) Looks like the real mice are about $180 each or a pair for $250. -- Bob _____ From: Di [mailto:drf218@...] Sent: Monday, January 03, 2005 4:20 PM wrblack@...; Subject: Re: Re: Introductions are you the " mouse-guy'? hehehe Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Guilty. Lynn suggested we take a photo of me with our mouse on my shoulder, me sitting in front of computer with very hostile expression, and send it to Tim. Actually, I think I picked up on http://www.adoptamouse.com/ <http://www.adoptamouse.com> from something posted to Uno Mas several weeks ago and just shared it with Down-syn and . Just shows to go you, once again no good deed goes unpunished. -- Bob, may God forbid I'm now going to be known as the " mouse-guy " p.s. But did mention Adoptamouse to president of local support group. She said she'd always wondered what the real Down syndrome model mice looked like. So, me, I sent her this: Here's a link to that Adopt a Mouse program: <http://www.adoptamouse.com/> http://www.adoptamouse.com/ There are pictures of the kids who started this and pictures of the little stuffed mouse. But doesn't throw any light on what the real laboratory Down syndrome knock out mice look like. But, totally unrelated, well, almost totally, here's a link to a photo of a real Down syndrome mouse, <http://www.jax.org/cyto/mice.html> http://www.jax.org/cyto/mice.html and here's a link to a description of this mouse model <http://jaxmice.jax.org/jaxmice-cgi/jaxmicedb.cgi?objtype=pricedetail & stock= 1924> http://jaxmice.jax.org/jaxmice-cgi/jaxmicedb.cgi?objtype=pricedetail & stock=1 924 (don't know if Stanford buys their mice from labs) Looks like the real mice are about $180 each or a pair for $250. -- Bob _____ From: Di [mailto:drf218@...] Sent: Monday, January 03, 2005 4:20 PM wrblack@...; Subject: Re: Re: Introductions are you the " mouse-guy'? hehehe Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 In a message dated 1/3/2005 4:27:46 PM Central Standard Time, wrblack@... writes: Ah well, such is life over on the venerable (I was told not to call it " old " ) Down-syn list. You could go to _http://listserv.nodak.edu/archives/down-syn.html_ (http://listserv.nodak.edu/archives/down-syn.html) LOL well I see the " Old Down-syn list " hasn't changed at all ............ truthfully I haven't been there in years, I came to a stop when I got active here IMHO this is a much friendlier group heehee Kathy mom to Sara 13 ¸...¸ ___/ /\ \___ ¸...¸ ,·´º o`·, /__/ _/\_ \__\ ,·´º o`·, ```)¨(´´´ | | | | | | | | | ```)¨(´´´ ¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸ As for me and my house, we will serve the Lord. Josh. 24:15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 In a message dated 1/3/2005 4:27:46 PM Central Standard Time, wrblack@... writes: Ah well, such is life over on the venerable (I was told not to call it " old " ) Down-syn list. You could go to _http://listserv.nodak.edu/archives/down-syn.html_ (http://listserv.nodak.edu/archives/down-syn.html) LOL well I see the " Old Down-syn list " hasn't changed at all ............ truthfully I haven't been there in years, I came to a stop when I got active here IMHO this is a much friendlier group heehee Kathy mom to Sara 13 ¸...¸ ___/ /\ \___ ¸...¸ ,·´º o`·, /__/ _/\_ \__\ ,·´º o`·, ```)¨(´´´ | | | | | | | | | ```)¨(´´´ ¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸ As for me and my house, we will serve the Lord. Josh. 24:15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 are you the " mouse-guy'? hehehe Di Re: Introductions I'm Bob, alias Mr. Black who's to blame for everything according to Mr. Casten, alias Timbo. Haven't yet gotten through all the intros on the list, nor all of Timbo's commentaries on same. Hey, , what gives? Did you propose a round of intros 'cause Tim couldn't find enough beer to drink and football to watch and you wanted to get him out of your hair for a while? I'm married to Lynn, who occasionally posts on Down-syn but passed intro duty to me. We have 5 kids. Lynn already had 2 girls and a boy when we married. I thought the deal was that if I could put up with her and her kids, then she'd put up with me and my dog. Well, the dog died, but her kids are still here. And now we've added two little boys of our own, Charlie, http://home.earthlink.net/~wrblack/ our reason for more than a causal interest in Down syndrome, and http://home.earthlink.net/~wrblack/robertsphotoalbum/ . Both Charlie and were 30-weeker preemie's, for quite different reasons, we think. Charlie came with and extra 21st chromosome, congenital cataracts, and hypospadias. The hypospadias and undescended testicles were repaired quite well and we've dealt with the cataracts, but he's added hypothyroidism, asthma, and some flavor of pervasive developmental disorder on the autistic spectrum. Charlie is now 5 1/2 years old, attends a special ed elementary school, having finished his special ed preschool. He's not yet walking nor talking. We think we're making progress on the former, not sure about the latter. We all hang out in the Princeton, NJ, area, which seems to stretch from Philly to NYC. -- Respectfully submitted but maybe next time Lynn will want to do this, Bob Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 are you the " mouse-guy'? hehehe Di Re: Introductions I'm Bob, alias Mr. Black who's to blame for everything according to Mr. Casten, alias Timbo. Haven't yet gotten through all the intros on the list, nor all of Timbo's commentaries on same. Hey, , what gives? Did you propose a round of intros 'cause Tim couldn't find enough beer to drink and football to watch and you wanted to get him out of your hair for a while? I'm married to Lynn, who occasionally posts on Down-syn but passed intro duty to me. We have 5 kids. Lynn already had 2 girls and a boy when we married. I thought the deal was that if I could put up with her and her kids, then she'd put up with me and my dog. Well, the dog died, but her kids are still here. And now we've added two little boys of our own, Charlie, http://home.earthlink.net/~wrblack/ our reason for more than a causal interest in Down syndrome, and http://home.earthlink.net/~wrblack/robertsphotoalbum/ . Both Charlie and were 30-weeker preemie's, for quite different reasons, we think. Charlie came with and extra 21st chromosome, congenital cataracts, and hypospadias. The hypospadias and undescended testicles were repaired quite well and we've dealt with the cataracts, but he's added hypothyroidism, asthma, and some flavor of pervasive developmental disorder on the autistic spectrum. Charlie is now 5 1/2 years old, attends a special ed elementary school, having finished his special ed preschool. He's not yet walking nor talking. We think we're making progress on the former, not sure about the latter. We all hang out in the Princeton, NJ, area, which seems to stretch from Philly to NYC. -- Respectfully submitted but maybe next time Lynn will want to do this, Bob Click reply to all for messages to go to the list. Just hit reply for messages to go to the sender of the message. ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Too late Bob, you are now " The Mouse-Guy " . thanks Tim! Di Re: Re: Introductions are you the " mouse-guy'? hehehe Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Oh I can definitely see the mouse on the left looks so much more loveable than the one on the right. LOL. Di Re: Re: Introductions are you the " mouse-guy'? hehehe Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Oh I can definitely see the mouse on the left looks so much more loveable than the one on the right. LOL. Di Re: Re: Introductions are you the " mouse-guy'? hehehe Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Hmmmm, oh well. We got our little, stuffed, adopted mouse several weeks ago, maybe two weeks before Christmas. I have reason to believe several members of the Uno Mas board also received theirs and were happy with them. I think the stuffed mice are actually manufactured in China, imported through New Orleans, and distributed out of Texas. Believe there was some initial delay in getting this distribution flow flowing. This fund raising program appears to have been started by some San Francisco Bay Area school kids, one of whom has a brother with Down syndrome. Proceeds are to go exclusively to support the research programs headed by Dr. Mobley at Stanford http://dsresearch.stanford.edu/ Cute mice, good cause, IMHO. Howsomever, somebody else (dammit, Tim, it wasn't I!!) posted something more about this program on the venerable Down-syn listserv several days ago. Some posters over there took exception to some of the program's literature referring to Down syndrome as a " disease. " Other Down-syn posters jumped in to say they refused to contribute because, according to them, news to me, some of the Stanford researchers use brain cells from aborted trisomy 21 fetuses. Well, first we got a medium-long thread on Down syndrome as a disease or condition or whatnot. Then we got one really long thread given over largely to topic of abortion with a few spinoff threads. And some rather heated discussion, some of it a bit too ad hominem, again IMmostHO. Ah well, such is life over on the venerable (I was told not to call it " old " ) Down-syn list. You could go to http://listserv.nodak.edu/archives/down-syn.html or http://groups-beta.google.com/group/bit.listserv.down-syn?hl=en <http://groups-beta.google.com/group/bit.listserv.down-syn?hl=en & lr= & ie=UTF- 8 & oe=UTF-8> & lr= & ie=UTF-8 & oe=UTF-8 if you wanted to review some of these exchanges yourself. Me, I still think,cute little stuffed mouse, worthy cause. Damn, this is almost as unhelpful as Timbo's summary was. Hope neither you nor any other newbies will be scared off by this sort of lively exchange. Regards and regrets, Bob _____ From: Kim kanan [mailto:kim_kanan@...] Sent: Monday, January 03, 2005 4:38 PM wrblack@... Subject: RE: Re: Introductions I came into this adopt a mouse thing late due to the fact that I just joined this group. Tell me about it. I checked out the site - looks great to me. I want to adopt some. Guilty. Lynn suggested we take a photo of me with our mouse on my shoulder, me sitting in front of computer with very hostile expression, and send it to Tim. Actually, I think I picked up on http://www.adoptamouse.com/ <http://www.adoptamouse.com/> from something posted to Uno Mas several weeks ago and just shared it with Down-syn and . Just shows to go you, once again no good deed goes unpunished. -- Bob, may God forbid I'm now going to be known as the " mouse-guy " p.s. But did mention Adoptamouse to president of local support group. She said she'd always wondered what the real Down syndrome model mice looked like. So, me, I sent her this: Here's a link to that Adopt a Mouse program: <http://www.adoptamouse.com/> http://www.adoptamouse.com/ There are pictures of the kids who started this and pictures of the little stuffed mouse. But doesn't throw any light on what the real laboratory Down syndrome knock out mice look like. But, totally unrelated, well, almost totally, here's a link to a photo of a real Down syndrome mouse, <http://www.jax.org/cyto/mice.html> http://www.jax.org/cyto/mice.html and here's a link to a description of this mouse model <http://jaxmice.jax.org/jaxmice-cgi/jaxmicedb.cgi?objtype=pricedetail & stock= 1924> http://jaxmice.jax.org/jaxmice-cgi/jaxmicedb.cgi?objtype=pricedetail & stock=1 924 (don't know if Stanford buys their mice from labs) Looks like the real mice are about $180 each or a pair for $250. -- Bob _____ From: Di [mailto:drf218@...] Sent: Monday, January 03, 2005 4:20 PM wrblack@...; Subject: Re: Re: Introductions are you the " mouse-guy'? hehehe Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Hmmmm, oh well. We got our little, stuffed, adopted mouse several weeks ago, maybe two weeks before Christmas. I have reason to believe several members of the Uno Mas board also received theirs and were happy with them. I think the stuffed mice are actually manufactured in China, imported through New Orleans, and distributed out of Texas. Believe there was some initial delay in getting this distribution flow flowing. This fund raising program appears to have been started by some San Francisco Bay Area school kids, one of whom has a brother with Down syndrome. Proceeds are to go exclusively to support the research programs headed by Dr. Mobley at Stanford http://dsresearch.stanford.edu/ Cute mice, good cause, IMHO. Howsomever, somebody else (dammit, Tim, it wasn't I!!) posted something more about this program on the venerable Down-syn listserv several days ago. Some posters over there took exception to some of the program's literature referring to Down syndrome as a " disease. " Other Down-syn posters jumped in to say they refused to contribute because, according to them, news to me, some of the Stanford researchers use brain cells from aborted trisomy 21 fetuses. Well, first we got a medium-long thread on Down syndrome as a disease or condition or whatnot. Then we got one really long thread given over largely to topic of abortion with a few spinoff threads. And some rather heated discussion, some of it a bit too ad hominem, again IMmostHO. Ah well, such is life over on the venerable (I was told not to call it " old " ) Down-syn list. You could go to http://listserv.nodak.edu/archives/down-syn.html or http://groups-beta.google.com/group/bit.listserv.down-syn?hl=en <http://groups-beta.google.com/group/bit.listserv.down-syn?hl=en & lr= & ie=UTF- 8 & oe=UTF-8> & lr= & ie=UTF-8 & oe=UTF-8 if you wanted to review some of these exchanges yourself. Me, I still think,cute little stuffed mouse, worthy cause. Damn, this is almost as unhelpful as Timbo's summary was. Hope neither you nor any other newbies will be scared off by this sort of lively exchange. Regards and regrets, Bob _____ From: Kim kanan [mailto:kim_kanan@...] Sent: Monday, January 03, 2005 4:38 PM wrblack@... Subject: RE: Re: Introductions I came into this adopt a mouse thing late due to the fact that I just joined this group. Tell me about it. I checked out the site - looks great to me. I want to adopt some. Guilty. Lynn suggested we take a photo of me with our mouse on my shoulder, me sitting in front of computer with very hostile expression, and send it to Tim. Actually, I think I picked up on http://www.adoptamouse.com/ <http://www.adoptamouse.com/> from something posted to Uno Mas several weeks ago and just shared it with Down-syn and . Just shows to go you, once again no good deed goes unpunished. -- Bob, may God forbid I'm now going to be known as the " mouse-guy " p.s. But did mention Adoptamouse to president of local support group. She said she'd always wondered what the real Down syndrome model mice looked like. So, me, I sent her this: Here's a link to that Adopt a Mouse program: <http://www.adoptamouse.com/> http://www.adoptamouse.com/ There are pictures of the kids who started this and pictures of the little stuffed mouse. But doesn't throw any light on what the real laboratory Down syndrome knock out mice look like. But, totally unrelated, well, almost totally, here's a link to a photo of a real Down syndrome mouse, <http://www.jax.org/cyto/mice.html> http://www.jax.org/cyto/mice.html and here's a link to a description of this mouse model <http://jaxmice.jax.org/jaxmice-cgi/jaxmicedb.cgi?objtype=pricedetail & stock= 1924> http://jaxmice.jax.org/jaxmice-cgi/jaxmicedb.cgi?objtype=pricedetail & stock=1 924 (don't know if Stanford buys their mice from labs) Looks like the real mice are about $180 each or a pair for $250. -- Bob _____ From: Di [mailto:drf218@...] Sent: Monday, January 03, 2005 4:20 PM wrblack@...; Subject: Re: Re: Introductions are you the " mouse-guy'? hehehe Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 Hi Elaine, I remember when your hubby was in - has it really been two years since he retired? Congratulations. Oh how I look forward to not moving EVER again. We have an IEP meeting with his new school on Wednesday - a whole new group of people - time to do it all over again. Yes, a national standardized form would make MY life so much easier. I wonder why they don't do that? take care, Jayne Tubafour <dbonorato4@...> wrote: Geez Jane. This sounds so familiar. We just retired from 20 in the Army two years ago. I'm so glad to be in one place. Honestly, I think having a national standardized IEP form and regulations would help military families, or completely having DOD schools at every base. There is little consistency and we had to reinvent the wheel every 3 years. lost a lot of time. Elaine Introductions Hi everyone, My name is Jayne. I'm married to and we have three children and a golden retriever named Buddy. We just moved to Virginia from South Dakota late this summer. My husband is in the Air Force which means we relocate on average every two years! He is currently working a Joint Staff Job with the Navy, the only reason we are blessed with a water nearby - otherwise it's the flat land of The Air Force! I came to this list 5 1/2 years ago when our youngest son, , was born - it has been such a source of support for me. Moving so often, it's hard to put down roots - but I can always come back to this list where I feel like I fit in - no questions asked. was born healthy, he had some struggles with weight gain and feeding in the beginning but made it through. He was a popular guy with his lady therapists through the birth to 3 early intervention years -he logged a lot of therapists with all our moves. For a Mommy that was always " go, go, go " 's birth taught me to slow down. I was never home until my calendar became very full with all the therapists coming and going to our home. had his first surgery at 2 1/2, tonsils and adenoids removed and tubes put in. When turned 3 he was off to preschool. He attended the same typical preschool my daughter attended but with an aide. He also attended an early intervention preschool on his opposite days of his other school. He loved the bus and his gaggle of therapists and teachers. When we moved away we took a picture with all his " ladies " , it looked like his harem! This year we started what was supposed to be an uneventful year of kindergarten in a new area. It's been a rollercoaster. We fought and fought with this school district for to be fully included in reg ed kindergarten with a 1:1 aide. Seems pretty simple but apparently not. They translated his needs into being in a self-contained special needs preschool with 4 other non-verbal boys! Quite the opposite of what we had planned on. After coming as close as we could to a lawsuit, we got moved into a new school in our county that is far more special needs friendly. He started there November 1st and is really starting to grow. He missed alot of school his first month there due to illness and his second set of tubes. In between all of this, was recently diagnosed with Autistic Spectrum Disorder - ASD. We are currently learning all that this new branch of our life encompasses. is in a special ed classroom for kindergarten and first grade and being included with a kindergarten class for various things throughout the day. I have held back on my big push for full inclusion right now as I think we have to get 's learning style down first. I do anticipate he will attend kindergarten again next year and I hope to see him included much more and get the support he needs to get through it gracefully. I just need to pick my battles right now - number 1 being how to get through to my child and how to cut down on some of his behaviors. 's speech is his greatest challenge. Like the rest of the kiddos on this list, his receptive language is pretty good - if he feels like listening at the moment. His expressive language is growing, slowly but surely. Thanks to his obsession with videos, he's starting to sing along, in his way, with the tv songs. He's very into any sport that uses a ball but loves to watch football, basketball, soccer, and his favorite - bull riding! He's also crazy about GI Joe " dolls " and all the guns they come with!! Lucky me! I do have two other children as well. is 13 and entering into the " mom you are so uncool " stage. He's quite interested in the girls now and is also experimenting with growing his hair out! He's a straight A student, very sensitive, a wonderful big brother, and a great athlete. My middle child, Emma, is 8 and before - was my challenge! I laugh now at the things that she did that made me want to pull my hair out - nothing compared to the continuous cycle of action . She too is blessed with the good student gene, not from their mother, and the amazing athlete gene as well. (I like to think I have something to do with this one as I was once quite athletic many moons ago...) (But hey, we are joining the Y next week!!!) She's a gymnast at heart and spends most her waking hours upside down or twisting and turning off of some piece of furniture. She's a bubbly little girl, who also has the longest legs like someone else stated about their daughter. Both and Emma are wonderful siblings to , they have more patience than I do at times. They are trying to understand this new ASD diagnosis and constantly trying to figure out what will be like when he gets older. They are waiting for him to talk and stop making a scene in public! I tell them I don't know if that day will come, but until then they help tons with his daily care. They get nervous when we meet someone older with Ds that doesn't talk or talks but is hard to understand. I think reality hits for my oldest and his dream of being " normal " is put to rest. I think it scares them that he will always sort of stand out in a crowd. Recently my daughter had the wonderful opportunity of meeting , Cheryl Wards daughter at our local Buddy Walk. Cheryl is " wildwards " on this list serv. She was amazed with and her clarity of speech and how " normal " she was. She told my son all about her and I think it was reassuring to see what all this hard work we parents do can really pay off. I know that whatever grows up to " be " , they will love him unconditionally as we all will - we just take it day by day and deal with each new branch of our tree of life as best as we can. Thanks to , I was directed to the listserv like Krystal, and that has been a huge change for our family as well. I enjoy both of these lists so much and look forward to the day that I can meet any of you in person! Thanks for always being quick to answer my thousands of questions. And a huge thank you for sharing your life stories so that I can see that sometimes when I feel so all alone in this Ds little world of ours, I can read a post and immediately know that I'm not alone. love to you all and Happy HAPPY New Year! Jayne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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