Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 In a message dated 8/4/01 10:31:19 AM Central Daylight Time, witchnbo@... writes: > to Drey---(almost 17 > years old that knows everything, so send your > Too funny!!!!!!!!!!!!!!!!!!! <A HREF= " http://banjosetupspecialist.homestead.com/ " >BanjoSetupSpecialist</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 In a message dated 8/4/01 10:31:19 AM Central Daylight Time, witchnbo@... writes: > to Drey---(almost 17 > years old that knows everything, so send your > Too funny!!!!!!!!!!!!!!!!!!! <A HREF= " http://banjosetupspecialist.homestead.com/ " >BanjoSetupSpecialist</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hello All, I'm Kim and the mother of 4 boys, Ben (13), Duncan (11), Hunter (4) and Teddy (4). Teddy has PMG w/bilaterial parasylvian fissures. He apparently got it when his umbilical cords got tangled with his identical twins cords and cut of Teddy's blood supply for a while. I haven't been on much due to marital problems...which for some reason always has emotional problems connected to it..LOL Oh yes, I live in CT So here's good things, Teddy went back to school this week, I pulled out his backpack and put all the needed stuff in it. Well when he saw it he started dragged to the front door and started banging on the door to go out. He was just too excited! Another cute thing...well perhaps... Hunter's been potty trained for 6 months and Teddy follows him into the bathroom and watches...no it's not what you think...Monday, Teddy decides to see what's happening and the next thing I know Hunter's yelling that Teddy's all wet because he stuck his head into the toilet...yes, oh gross, his hair was standing straight up like someone had given him a swirly. Another cute thing...yes this one is cute...I'm fixing supper and check on the boys and Hunter & Teddy are sitting on the couch. Hunter is reading " Five Little Monkeys " to Teddy and when he finished he grabbed Teddy's hands and they were both jumping up and down on the couch and then flinging themselves " DOWN " . It was too cute, and Teddy really had a case of the giggles from it. You know whenever I get down about their diffences something like this happens. Oh by the way, talking about giggles...I got a " WIGGLES " tape from the library and they LOVE it..I HATE it. Talk about a headache maker, it should have the warning to take 2 tylenol and then play. Sorry this is late, but on the other hand I actually got something accomplished today. Have a good day! Kim Raub Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hi. My name is Dawn. We live in CT. Our son, , is now 5mos old. He was diagnosed with PMG at 4 mos. As you can imagine it's been a pretty stressfull month. It's helped me a great deal to read the items everyone has posted. had his Birth to Three assessment this past Tuesday and as expected his muscle tone is very low. But she's encouraged that he tries to do things. They feel his emotional, social and behavioral milestones are on target so far. He'll be starting PT next week, once a week. Then we get an OT in Nov for 5 visits.. NOt quite sure why only 5 vists but I'll find that out. Josh is doing well.. We're lucky in that he's a good eater. He's starting to spit up a little more though.. But the PED said to just keep an eye on it for now. He's about 15lbs and 27in long. We met with the PED Neurologist last month but are still waiting to get some info. She is still trying to meet with a collage to go over his MRI films. From what I've been seeing from the other postings is there are different types of PMG. So I'm hoping we get some info soon so we at least get an idea of what we might expect. My husband isn't accepting the diagnosis. I'm being practical about it.. I haven't written my son off and I truly am hoping and praying for the best but to keep my sanity I have to be practical. Getting tired of people going.. with the tilted head.. sooo. How is Josh??.. I now they mean well but Josh is just fine. He's a happy, flirtatious little boy.. We are the ones who are having the hard time. I am in therapy. Hoping to get my husband to come with me soon. Not happy with my daycare these days.. but that is another e-mail. I'm actually at work today and need to get back to work.. I missed a lot of time with various dr's appts and such. Didn't expect this to be so long.. but thanks for listening! Dawn, Mommy to 5 mos w/PMG Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Kim, Your boys sound so cute and busy. Hope the marital problems work out well. Virginia mum to alicia and amber -- Re: roll call Hello All, I'm Kim and the mother of 4 boys, Ben (13), Duncan (11), Hunter (4) and Teddy (4). Teddy has PMG w/bilaterial parasylvian fissures. He apparently got it when his umbilical cords got tangled with his identical twins cords and cut of Teddy's blood supply for a while. I haven't been on much due to marital problems...which for some reason always has emotional problems connected to it..LOL Oh yes, I live in CT So here's good things, Teddy went back to school this week, I pulled out his backpack and put all the needed stuff in it. Well when he saw it he started dragged to the front door and started banging on the door to go out. He was just too excited! Another cute thing...well perhaps... Hunter's been potty trained for 6 months and Teddy follows him into the bathroom and watches...no it's not what you think...Monday, Teddy decides to see what's happening and the next thing I know Hunter's yelling that Teddy's all wet because he stuck his head into the toilet...yes, oh gross, his hair was standing straight up like someone had given him a swirly. Another cute thing...yes this one is cute...I'm fixing supper and check on the boys and Hunter & Teddy are sitting on the couch. Hunter is reading " Five Little Monkeys " to Teddy and when he finished he grabbed Teddy's hands and they were both jumping up and down on the couch and then flinging themselves " DOWN " . It was too cute, and Teddy really had a case of the giggles from it. You know whenever I get down about their diffences something like this happens. Oh by the way, talking about giggles...I got a " WIGGLES " tape from the library and they LOVE it..I HATE it. Talk about a headache maker, it should have the warning to take 2 tylenol and then play. Sorry this is late, but on the other hand I actually got something accomplished today. Have a good day! Kim Raub Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2001 Report Share Posted November 5, 2001 Hi , I had to write and say hello. I was born in Knoxville and raised there my first 7 years. Then we moved to Memphis. I hope to get back to the Smokies one day. I'm partial to them. My brother plays the banjo, guitar and harmonica. His banjo is nothing special- just an old Gibsonhe bought in the 70's. Take care. Schott Houston, Texas --- K@... wrote: > We found out Cody was going to have some problems at > the 1st. sonogram. > They'd told it was hydrocephals. His genetic study > showed all the chromosomes > normal & we went over a genetic history of our > family to no avail. At 6 mons. > he had his first seizure then we pursued further > testing. His brain > electrical activity showed the left side functioning > at .5, (normal 5.0) He > developed apena & we dealt with that for two years > then had his tonsils & > adeniods take out & that cured his problem with it. > He takes Dialantin to > control his seizures, it's not a very stable > medicine & seems to vary from > batch to batch. The trough level at which he has > seizures at is .11. On this > medicine it also seems when he runs a temperature it > tends to drop him trough > level 3pts. His neuro has told me that he has > partial complex seizures, but > he exibits other types of seizures too. His > breathing tends to drop to 2-8 > resperations per min. when he has one. He's had to > be intubated during every > seizure except one that he's had. He's attending > kindergarden again this year > along with his special ed. classses. I opted for him > to do this due to his > Aug. birthday & he'd be just a little bigger so that > other kids would tend to > leave him alone & not pick on him. He gets along > well with others & loves > everyone unless they really tick him off..... They > haven't done that & I pity > the one that does. LOL He weighs about 73lbs. now & > stands above my hip. (I " m > 6'1 " ) He has balance problems & no sense of fear > about heights etc. He's the > only child we will be having due to finances etc. > He's the sweetest boy > anyone could ever hope for, he just makes me melt. > <G> > K. Cody's dad. > > <A > HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2001 Report Share Posted November 5, 2001 Hi , I had to write and say hello. I was born in Knoxville and raised there my first 7 years. Then we moved to Memphis. I hope to get back to the Smokies one day. I'm partial to them. My brother plays the banjo, guitar and harmonica. His banjo is nothing special- just an old Gibsonhe bought in the 70's. Take care. Schott Houston, Texas --- K@... wrote: > We found out Cody was going to have some problems at > the 1st. sonogram. > They'd told it was hydrocephals. His genetic study > showed all the chromosomes > normal & we went over a genetic history of our > family to no avail. At 6 mons. > he had his first seizure then we pursued further > testing. His brain > electrical activity showed the left side functioning > at .5, (normal 5.0) He > developed apena & we dealt with that for two years > then had his tonsils & > adeniods take out & that cured his problem with it. > He takes Dialantin to > control his seizures, it's not a very stable > medicine & seems to vary from > batch to batch. The trough level at which he has > seizures at is .11. On this > medicine it also seems when he runs a temperature it > tends to drop him trough > level 3pts. His neuro has told me that he has > partial complex seizures, but > he exibits other types of seizures too. His > breathing tends to drop to 2-8 > resperations per min. when he has one. He's had to > be intubated during every > seizure except one that he's had. He's attending > kindergarden again this year > along with his special ed. classses. I opted for him > to do this due to his > Aug. birthday & he'd be just a little bigger so that > other kids would tend to > leave him alone & not pick on him. He gets along > well with others & loves > everyone unless they really tick him off..... They > haven't done that & I pity > the one that does. LOL He weighs about 73lbs. now & > stands above my hip. (I " m > 6'1 " ) He has balance problems & no sense of fear > about heights etc. He's the > only child we will be having due to finances etc. > He's the sweetest boy > anyone could ever hope for, he just makes me melt. > <G> > K. Cody's dad. > > <A > HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2001 Report Share Posted November 5, 2001 Hi , I had to write and say hello. I was born in Knoxville and raised there my first 7 years. Then we moved to Memphis. I hope to get back to the Smokies one day. I'm partial to them. My brother plays the banjo, guitar and harmonica. His banjo is nothing special- just an old Gibsonhe bought in the 70's. Take care. Schott Houston, Texas --- K@... wrote: > We found out Cody was going to have some problems at > the 1st. sonogram. > They'd told it was hydrocephals. His genetic study > showed all the chromosomes > normal & we went over a genetic history of our > family to no avail. At 6 mons. > he had his first seizure then we pursued further > testing. His brain > electrical activity showed the left side functioning > at .5, (normal 5.0) He > developed apena & we dealt with that for two years > then had his tonsils & > adeniods take out & that cured his problem with it. > He takes Dialantin to > control his seizures, it's not a very stable > medicine & seems to vary from > batch to batch. The trough level at which he has > seizures at is .11. On this > medicine it also seems when he runs a temperature it > tends to drop him trough > level 3pts. His neuro has told me that he has > partial complex seizures, but > he exibits other types of seizures too. His > breathing tends to drop to 2-8 > resperations per min. when he has one. He's had to > be intubated during every > seizure except one that he's had. He's attending > kindergarden again this year > along with his special ed. classses. I opted for him > to do this due to his > Aug. birthday & he'd be just a little bigger so that > other kids would tend to > leave him alone & not pick on him. He gets along > well with others & loves > everyone unless they really tick him off..... They > haven't done that & I pity > the one that does. LOL He weighs about 73lbs. now & > stands above my hip. (I " m > 6'1 " ) He has balance problems & no sense of fear > about heights etc. He's the > only child we will be having due to finances etc. > He's the sweetest boy > anyone could ever hope for, he just makes me melt. > <G> > K. Cody's dad. > > <A > HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> > > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2001 Report Share Posted December 2, 2001 , Your son Cody sounds a lot like my son, Trevor. He also has BPNH, PMG and has just turned 6 years old. He is in the Visual Impaired Class but mainstreams with the regular kindergarten class for circle time and recess. He does have functional vision but it can fluctuate at times. His fine motor skills are also very delayed. Puzzles are a nightmare for him. Staying on task/focused is also very hard. We've been using the timer to help with this. He does much better in school than he does for us at home. We're having behavior problems with Trevor as well. He has a hard time on the weekends transitioning to unstructured time. I've been trying to get help with this but to no avail. He is considered PDD-NOS, a step down from the autism dx. Anyway, would love to hear more about Cody. Take care, Donna Delzer(mom to Trevor,6 years old dygenesis of cc, seizure disorder, hydrocheyelus and DW Variant(VP shunt placed 7/99), panhypopititurism,Optic Nerve Hypoplasia,Cortical Visual Impairment,polymicrogyria,BPNH, PDD-NOS) Summerville,SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2001 Report Share Posted December 2, 2001 , Your son Cody sounds a lot like my son, Trevor. He also has BPNH, PMG and has just turned 6 years old. He is in the Visual Impaired Class but mainstreams with the regular kindergarten class for circle time and recess. He does have functional vision but it can fluctuate at times. His fine motor skills are also very delayed. Puzzles are a nightmare for him. Staying on task/focused is also very hard. We've been using the timer to help with this. He does much better in school than he does for us at home. We're having behavior problems with Trevor as well. He has a hard time on the weekends transitioning to unstructured time. I've been trying to get help with this but to no avail. He is considered PDD-NOS, a step down from the autism dx. Anyway, would love to hear more about Cody. Take care, Donna Delzer(mom to Trevor,6 years old dygenesis of cc, seizure disorder, hydrocheyelus and DW Variant(VP shunt placed 7/99), panhypopititurism,Optic Nerve Hypoplasia,Cortical Visual Impairment,polymicrogyria,BPNH, PDD-NOS) Summerville,SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 In a message dated 12/3/01 6:57:05 AM Central Standard Time, lschott2002@... writes: > I already do things like put a pat of butter in > his vegetables etc. Thanks, ! > > Your welcome, I read about the brain cells developing until they reached 4-5 years of age & just started doing it on my own. I'd say a nutritionist could be of greater help in giving some ideas. Happy Holidays, K. <A HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 In a message dated 12/3/01 6:57:05 AM Central Standard Time, lschott2002@... writes: > I already do things like put a pat of butter in > his vegetables etc. Thanks, ! > > Your welcome, I read about the brain cells developing until they reached 4-5 years of age & just started doing it on my own. I'd say a nutritionist could be of greater help in giving some ideas. Happy Holidays, K. <A HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 In a message dated 12/3/01 6:57:05 AM Central Standard Time, lschott2002@... writes: > I already do things like put a pat of butter in > his vegetables etc. Thanks, ! > > Your welcome, I read about the brain cells developing until they reached 4-5 years of age & just started doing it on my own. I'd say a nutritionist could be of greater help in giving some ideas. Happy Holidays, K. <A HREF= " http://banjosetupspecialist.homestead.com/index.html " >BanjoSetupSpecialist\ </A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 Cody sounds like a real doll. My husband and I are interested in adding some fat to baby 's diet. What kinds of things would you suggest for a 6 month old. I already do things like put a pat of butter in his vegetables etc. Thanks, ! Schott Houston, Texas --- K@... wrote: > Cody loves everyone he meets, he's never met a > strange in his life. He has a > grin that is kinda of crooked, we call it his Elvis > grin. He speaks to every > woman in Wal-Mart when we go there. He'll say, " Hi > sweet lady, can I have a > hug? " When I ask him what he is he'll say, " Daddy, > I'm a babe magnet. " He's > just too funny! He has no fear of heights or > danger... That causes us to > have to stay right behind him @ all times. His > ballance problems & stays > bruised from falling & steps are so very dangerous > for him. His attention to > tasks like that are lacking so much. We stay after > him & work with him > everyday. His fine motor skills are really lacking > but we're staying with the > program pushing him to work as hard as we can. We > got Cody involved in early > intervention & fed him a high fat diet to help with > brain cell development. > We stimulated him with everything that we could, > textures, music, exposing > him to every different thing we could think of. We > were married 13 years > before Cody came along, not really planned etc. All > of the genetic testing > showed normal thru ambo testing. At first they > thought he had Hydrocephlas > from the sonograms..... It's been a long road, but > well worth it. I love that > lil' rascal so very much. Hugs & kisses to all the > angles on the list. We say > a prayer for them everynight. Happy Holidays, > , Toni & Cody > > Cody Colton > Age 6 > Biapartial Perventricular Nodular Heterophia & > Polymicrogyria (on left side) > Diagnosed @ 6 months > Attending Kindergarden w/Special Ed. classes > Loves watching videos & spending the nights with his > grandparents. > Medication. Dialantin > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 Cody sounds like a real doll. My husband and I are interested in adding some fat to baby 's diet. What kinds of things would you suggest for a 6 month old. I already do things like put a pat of butter in his vegetables etc. Thanks, ! Schott Houston, Texas --- K@... wrote: > Cody loves everyone he meets, he's never met a > strange in his life. He has a > grin that is kinda of crooked, we call it his Elvis > grin. He speaks to every > woman in Wal-Mart when we go there. He'll say, " Hi > sweet lady, can I have a > hug? " When I ask him what he is he'll say, " Daddy, > I'm a babe magnet. " He's > just too funny! He has no fear of heights or > danger... That causes us to > have to stay right behind him @ all times. His > ballance problems & stays > bruised from falling & steps are so very dangerous > for him. His attention to > tasks like that are lacking so much. We stay after > him & work with him > everyday. His fine motor skills are really lacking > but we're staying with the > program pushing him to work as hard as we can. We > got Cody involved in early > intervention & fed him a high fat diet to help with > brain cell development. > We stimulated him with everything that we could, > textures, music, exposing > him to every different thing we could think of. We > were married 13 years > before Cody came along, not really planned etc. All > of the genetic testing > showed normal thru ambo testing. At first they > thought he had Hydrocephlas > from the sonograms..... It's been a long road, but > well worth it. I love that > lil' rascal so very much. Hugs & kisses to all the > angles on the list. We say > a prayer for them everynight. Happy Holidays, > , Toni & Cody > > Cody Colton > Age 6 > Biapartial Perventricular Nodular Heterophia & > Polymicrogyria (on left side) > Diagnosed @ 6 months > Attending Kindergarden w/Special Ed. classes > Loves watching videos & spending the nights with his > grandparents. > Medication. Dialantin > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2001 Report Share Posted December 3, 2001 Cody sounds like a real doll. My husband and I are interested in adding some fat to baby 's diet. What kinds of things would you suggest for a 6 month old. I already do things like put a pat of butter in his vegetables etc. Thanks, ! Schott Houston, Texas --- K@... wrote: > Cody loves everyone he meets, he's never met a > strange in his life. He has a > grin that is kinda of crooked, we call it his Elvis > grin. He speaks to every > woman in Wal-Mart when we go there. He'll say, " Hi > sweet lady, can I have a > hug? " When I ask him what he is he'll say, " Daddy, > I'm a babe magnet. " He's > just too funny! He has no fear of heights or > danger... That causes us to > have to stay right behind him @ all times. His > ballance problems & stays > bruised from falling & steps are so very dangerous > for him. His attention to > tasks like that are lacking so much. We stay after > him & work with him > everyday. His fine motor skills are really lacking > but we're staying with the > program pushing him to work as hard as we can. We > got Cody involved in early > intervention & fed him a high fat diet to help with > brain cell development. > We stimulated him with everything that we could, > textures, music, exposing > him to every different thing we could think of. We > were married 13 years > before Cody came along, not really planned etc. All > of the genetic testing > showed normal thru ambo testing. At first they > thought he had Hydrocephlas > from the sonograms..... It's been a long road, but > well worth it. I love that > lil' rascal so very much. Hugs & kisses to all the > angles on the list. We say > a prayer for them everynight. Happy Holidays, > , Toni & Cody > > Cody Colton > Age 6 > Biapartial Perventricular Nodular Heterophia & > Polymicrogyria (on left side) > Diagnosed @ 6 months > Attending Kindergarden w/Special Ed. classes > Loves watching videos & spending the nights with his > grandparents. > Medication. Dialantin > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Roll Call > Hi! This is , Mom to . Just a quick hello to stay in the > loop, so to speak. is doing well. She is in school 4 days a > week for 2 1/2 hours in the morning. Yes! Light arrives in my > tunnel. I love the schooling she is getting. There are 4 kids all > and 2 teachers. Her teacher knows sign and uses it constantly with > speech. They are also experimenting with any form of communication > will take to. Picture cards seem to be working but only in > that she likes to hold them and mix them up. She has learned to > point with her index finger so that has become a powerful tool for > her. They introduced the computer with a touch screen and that has > been wonderful. She mostly plays games but at least she's getting > the idea of cause and effect. My computer screen at home is riddle > with sticky finger marks. Good thing is that the county may be > getting her a computer for home. Time will tell... So, life is good > and it will be even better when the kids are back in school. > > , 's Mom > 3 years old w/Diffuse PMG > commando crawling, holding a bottle and self feeding soft foods, uses > DAFO's and a wheelchair (for MY back), working on getting herself > into the sitting position from lying and back down, can sit > unattended, working on walking with much promise, no seizures, > occasional hypoglycemia, good immune system, non-verbal, great laugh, > loud cry and big beautiful blue eyes. Living in Northern California. > > Our website: http://home.attbi.com/~shanhigs/ > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Roll Call > Hi! This is , Mom to . Just a quick hello to stay in the > loop, so to speak. is doing well. She is in school 4 days a > week for 2 1/2 hours in the morning. Yes! Light arrives in my > tunnel. I love the schooling she is getting. There are 4 kids all > and 2 teachers. Her teacher knows sign and uses it constantly with > speech. They are also experimenting with any form of communication > will take to. Picture cards seem to be working but only in > that she likes to hold them and mix them up. She has learned to > point with her index finger so that has become a powerful tool for > her. They introduced the computer with a touch screen and that has > been wonderful. She mostly plays games but at least she's getting > the idea of cause and effect. My computer screen at home is riddle > with sticky finger marks. Good thing is that the county may be > getting her a computer for home. Time will tell... So, life is good > and it will be even better when the kids are back in school. > > , 's Mom > 3 years old w/Diffuse PMG > commando crawling, holding a bottle and self feeding soft foods, uses > DAFO's and a wheelchair (for MY back), working on getting herself > into the sitting position from lying and back down, can sit > unattended, working on walking with much promise, no seizures, > occasional hypoglycemia, good immune system, non-verbal, great laugh, > loud cry and big beautiful blue eyes. Living in Northern California. > > Our website: http://home.attbi.com/~shanhigs/ > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 Roll Call > Hi! This is , Mom to . Just a quick hello to stay in the > loop, so to speak. is doing well. She is in school 4 days a > week for 2 1/2 hours in the morning. Yes! Light arrives in my > tunnel. I love the schooling she is getting. There are 4 kids all > and 2 teachers. Her teacher knows sign and uses it constantly with > speech. They are also experimenting with any form of communication > will take to. Picture cards seem to be working but only in > that she likes to hold them and mix them up. She has learned to > point with her index finger so that has become a powerful tool for > her. They introduced the computer with a touch screen and that has > been wonderful. She mostly plays games but at least she's getting > the idea of cause and effect. My computer screen at home is riddle > with sticky finger marks. Good thing is that the county may be > getting her a computer for home. Time will tell... So, life is good > and it will be even better when the kids are back in school. > > , 's Mom > 3 years old w/Diffuse PMG > commando crawling, holding a bottle and self feeding soft foods, uses > DAFO's and a wheelchair (for MY back), working on getting herself > into the sitting position from lying and back down, can sit > unattended, working on walking with much promise, no seizures, > occasional hypoglycemia, good immune system, non-verbal, great laugh, > loud cry and big beautiful blue eyes. Living in Northern California. > > Our website: http://home.attbi.com/~shanhigs/ > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2002 Report Share Posted March 4, 2002 That's so great to hear that Cody is doing well. I needed something positive to keep me going with trying to deal with Baby . Sometimes the progress is so darn slow. --- K@... wrote: > Hello all, I hope everyone is missing out on some of > the sinus & flu symptoms > going around. I''m still suffering from the sinus > infection that put me in > the hospital, this is over a month I've had it. Cody > caught it again but is > well on the mend. Today was the awards day & he > received his citizenship > award @ the school assembly. My Mom & I along with > Toni & her dad were there > to get to see him proudly get it. He was walking out > & one of the mothers > asked them to stop so she could take a picture of > them & he held his bag of > goodies & his certificate above his head & gave his > Elvis grin for her. <G> > He was more excited about us being there than > anything. We promised to stay & > have lunch with him & he sat on his papaw's lap > while we ate. <G> He had to > introduce his papaw to everyone we ran into in the > hall on the way to the > lunch room. He's really got most of his teachers > wrapped around his finger. I > met one in a M-team meeting a couple of weeks ago, > (that I'd not met before). > When she introduced herself I commented, " So your > the one. " When she asked > what I meant, I told her that she's the one that > Cody is always talking about > saying, " She's so beautiful. " LOL She blushed & > grinned, every time I see > her looking @ Cody when we pass by her room now I > can just see her melt a > little bit more when she looks @ him. <G> His fine > motor skills & balance > problems are slowly improving, we work hard with him > everyday. His attention > to task is getting longer & he's not whining & > giving up on harder projects > like he was. He still has to be redirected to > projects that have several > steps in them & won't work independently. If you > stay with him & push him > he'll get it done. He became a member of the one > hundred club in kindergarten > a week ago. While were on our 20 min. drive to > school I'll work with him on > our counting every morning. His memory is really > working well & he retains a > great deal. He's still very delayed in some ways but > making so much more > progress than they give him credit for, especially > the school physcologist. > He's gained some more weight & has several jelly > rolls on his tummy. I've > started calling him my " chunky monkey. " His belly is > the only thing that > resembles my genes anymore. He's growing so fast > lately. He weighs 73 1/2 > pounds & wears a size 1 1/2 double E shoe. We bought > him a the Train > wooden railroad track with our income tax funds & > he's had a blast. Had to > give up the kitchen table but, it was worth it. He's > had a blast with it. He > pushes the wooden trains around the track & hooks & > unhooks the magnets > holding the cars together. It's really helping his > fine motor skills a great > deal. I didn't see how it could @ first but, it is. > Hugs & kisses to all the > kids on in the group & patience & hugs to the > parentss. ;-) God Bless, > K. > > Cody Colton > Age 6 > Biapartial Perventricular Nodular Heterophia & > Polymicrogyria (on left side) > Diagnosed @ 6 months > Attending Kindergarten w/Special Ed. Classes > Loves watching videos & spending the nights with his > grandparents & giving > all of daddy's kisses & smooches to his momma. > Medication. Dialantin > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 I saw the picture files the other day. Mattie is adorable. What is BPNH? Take care. in Houston --- sallyjd2001 wrote: > Hi Everyone, > > I haven't posted in a few months so I thought I > would re-introduce > our family to the new members. Our son was > diagnosed at 3 > months with BPNH with a patch of PMG. We saw Dr. > Dobyns at 5 months > who gave us the specific diagnosis. Dr. Dobyns has > not concluded any > specific reason for this but we believe my bleeding > at the beginning > of the pregnancy and my two vessel cord was a huge > factor. > will be 3 years old in May. He has come along way > in the last 2 1/2 > years. has pt, ot, speech and oral motor > therapy, group > therapy, swimming and a regular morning day out > program. He has a > busy schedule but doesn't seem to mind. We are > going to try > therapeutic horseback riding next week and heard > great stuff about > that for kids with sensory problems. He is > non-verbal though he did > use mama, dada, bye bye but they went away. He has > never had any > seizures so far. He claps his hands for yes or > more, that's his only > gesture so far but are just so happy he can answer > us. He sometimes > uses pecs cards to tell us if he wants juice etc. > but that is slow > going. He doesn't walk independently quite yet but > walks up to ten > feet without diving. He doesn't use the walker > anymore, just wants > to hold our hands and loves to push his sisters > stroller (with help) > He has tactile defensiveness and gags when he is > presented with new > toys particularly little ones (fisher price little > people) but > eventually gets over it. He doesn't like loud adult > voices or the > drive thru :-) because of the speaker. He loves his > 10 month old > little sister Audrey and smiles a lot when she comes > in the room. > His favorite thing in the world is to " wrestle " with > his Daddy. Andy > says Mattie want to wrestle? and Mattie crawls over > and kind of leans > on Andy, its really nice to see. He loves the > computer especially > jumpstart baby and nickjr. com. He is low tone, > fine motor is > limited but he is able to scribble with egg shaped > chalk. He has > very curly blond hair and we think he seems to > understand almost > everything we say to him, especially when we spell > video! We have > been searching for handicap schools for him and he > got into the one > we want which is 40 minutes away by bus. Still not > sure if the > school district will allow him to go there. He > loves to thumb > through books, listen to music and books on tape and > watch his fish > in his fishtank. All of these skills took a > tremendous amount of > time and effort for him and we, like all of you with > your angels, > couldn't be any prouder. Welcome to all the new > members, happy > belated birthday to all we missed and I just want to > say how lucky I > feel to have this community to keep me going. > > Sally , Mom to (Mattie) who we hope > will walk by himself > before his little sister! > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 I saw the picture files the other day. Mattie is adorable. What is BPNH? Take care. in Houston --- sallyjd2001 wrote: > Hi Everyone, > > I haven't posted in a few months so I thought I > would re-introduce > our family to the new members. Our son was > diagnosed at 3 > months with BPNH with a patch of PMG. We saw Dr. > Dobyns at 5 months > who gave us the specific diagnosis. Dr. Dobyns has > not concluded any > specific reason for this but we believe my bleeding > at the beginning > of the pregnancy and my two vessel cord was a huge > factor. > will be 3 years old in May. He has come along way > in the last 2 1/2 > years. has pt, ot, speech and oral motor > therapy, group > therapy, swimming and a regular morning day out > program. He has a > busy schedule but doesn't seem to mind. We are > going to try > therapeutic horseback riding next week and heard > great stuff about > that for kids with sensory problems. He is > non-verbal though he did > use mama, dada, bye bye but they went away. He has > never had any > seizures so far. He claps his hands for yes or > more, that's his only > gesture so far but are just so happy he can answer > us. He sometimes > uses pecs cards to tell us if he wants juice etc. > but that is slow > going. He doesn't walk independently quite yet but > walks up to ten > feet without diving. He doesn't use the walker > anymore, just wants > to hold our hands and loves to push his sisters > stroller (with help) > He has tactile defensiveness and gags when he is > presented with new > toys particularly little ones (fisher price little > people) but > eventually gets over it. He doesn't like loud adult > voices or the > drive thru :-) because of the speaker. He loves his > 10 month old > little sister Audrey and smiles a lot when she comes > in the room. > His favorite thing in the world is to " wrestle " with > his Daddy. Andy > says Mattie want to wrestle? and Mattie crawls over > and kind of leans > on Andy, its really nice to see. He loves the > computer especially > jumpstart baby and nickjr. com. He is low tone, > fine motor is > limited but he is able to scribble with egg shaped > chalk. He has > very curly blond hair and we think he seems to > understand almost > everything we say to him, especially when we spell > video! We have > been searching for handicap schools for him and he > got into the one > we want which is 40 minutes away by bus. Still not > sure if the > school district will allow him to go there. He > loves to thumb > through books, listen to music and books on tape and > watch his fish > in his fishtank. All of these skills took a > tremendous amount of > time and effort for him and we, like all of you with > your angels, > couldn't be any prouder. Welcome to all the new > members, happy > belated birthday to all we missed and I just want to > say how lucky I > feel to have this community to keep me going. > > Sally , Mom to (Mattie) who we hope > will walk by himself > before his little sister! > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Hope all are doing as well as can be. turned a year old on May 5th. What a year it has been- gone from being told at birth he would not live long and probably be infantile the rest of his short life to he'll walk and talk at least. is happy and healthy, weighing in at 19.5 pounds. He calls for mama when he's upset, is a great eater, loves trees and swinging in the park and generally finds his world amusing. He gets PT, OT, vision therapy (much improved in his vision). He is progressing, but it is slow. He has great difficulty rolling from his back to his tummy but he tries very hard and gets it eventually. He can sit on his own for about 5 minutes and then falls back. He wieght bears on his legs and will try to take a step or two if you're holding him up. He still can't successfully hold objects for very long- he grabs his spoon or a piece of food and attempts to bring it to his mouth. Usually it misses. He then gets angry and gets so tense that his muscles freeze in whatever position he's in. We're still seizure free on zonegran. We're trying to decide now if school might benefit him at age two instead of age 3 like we planned. Any thoughts on that? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Hope all are doing as well as can be. turned a year old on May 5th. What a year it has been- gone from being told at birth he would not live long and probably be infantile the rest of his short life to he'll walk and talk at least. is happy and healthy, weighing in at 19.5 pounds. He calls for mama when he's upset, is a great eater, loves trees and swinging in the park and generally finds his world amusing. He gets PT, OT, vision therapy (much improved in his vision). He is progressing, but it is slow. He has great difficulty rolling from his back to his tummy but he tries very hard and gets it eventually. He can sit on his own for about 5 minutes and then falls back. He wieght bears on his legs and will try to take a step or two if you're holding him up. He still can't successfully hold objects for very long- he grabs his spoon or a piece of food and attempts to bring it to his mouth. Usually it misses. He then gets angry and gets so tense that his muscles freeze in whatever position he's in. We're still seizure free on zonegran. We're trying to decide now if school might benefit him at age two instead of age 3 like we planned. Any thoughts on that? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Hope all are doing as well as can be. turned a year old on May 5th. What a year it has been- gone from being told at birth he would not live long and probably be infantile the rest of his short life to he'll walk and talk at least. is happy and healthy, weighing in at 19.5 pounds. He calls for mama when he's upset, is a great eater, loves trees and swinging in the park and generally finds his world amusing. He gets PT, OT, vision therapy (much improved in his vision). He is progressing, but it is slow. He has great difficulty rolling from his back to his tummy but he tries very hard and gets it eventually. He can sit on his own for about 5 minutes and then falls back. He wieght bears on his legs and will try to take a step or two if you're holding him up. He still can't successfully hold objects for very long- he grabs his spoon or a piece of food and attempts to bring it to his mouth. Usually it misses. He then gets angry and gets so tense that his muscles freeze in whatever position he's in. We're still seizure free on zonegran. We're trying to decide now if school might benefit him at age two instead of age 3 like we planned. Any thoughts on that? __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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