Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Hi-not much new has happened w/ Izaiah. He is 10 mths old and weighs over 15 lbs and is 25 inches long. He has diffuse PMG along w/ mihf HPE and CVI. He is having cleft repair surgery in 11 days. He receives PT, OT, Early Intervention 1x week and will begin Vision therapy 2x mth in August. He can now sit up for a couple of seconds and prop sits well, bears weight on legs and tries to pull up, can push up on all 4s and rolls, reaches for toys more, actively interacts socially, eats solids, and is trying to talk-he babbles and coos and laughs. He is a happy, sweet, content baby boy. Thats about it-nothing new much! Jen and Izaiah http://izaiahnc.tripod.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Hi-not much new has happened w/ Izaiah. He is 10 mths old and weighs over 15 lbs and is 25 inches long. He has diffuse PMG along w/ mihf HPE and CVI. He is having cleft repair surgery in 11 days. He receives PT, OT, Early Intervention 1x week and will begin Vision therapy 2x mth in August. He can now sit up for a couple of seconds and prop sits well, bears weight on legs and tries to pull up, can push up on all 4s and rolls, reaches for toys more, actively interacts socially, eats solids, and is trying to talk-he babbles and coos and laughs. He is a happy, sweet, content baby boy. Thats about it-nothing new much! Jen and Izaiah http://izaiahnc.tripod.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Hi everyone~ My name is Marsh and I live in Nova Scotia with my husband Coady, and sons Trey (11) and (5-PMG). My sons and I are US citizens living 'abroad'. Time sure does fly- will be 6 years old on the 22nd of this month. He's looking forward to starting Kindergarten (grade Primary in Canada) in September. I kept him in pre school for an extra year since his birthday is so late in August, and he really needed a little extra time. 's PMG is isolated to the right side of his brain, mostly in the parietal lobe. The only outward sign is an overall left side weakness and very limited use and coordination of his left arm and hand. Now that he's bigger and doing more, I notice that his left hand feels smaller and slimmer than his right. had his first seizure back in January, and has been averaging one per month. The seizures are rather classic tonic-clonic, occur only when he is asleep, last from 1 to 2 minutes, and cause his left arm and leg to draw up. He somehow knows when he's had a seizure, and tells me that his arm 'gets stuck'. He doesn't have breathing difficulty when he seizes and doesn't wet himself- the stiffness and jerking only affects his extremities. His neurologist doesn't want to do anything about his seizures right now since they have no ill effect and occur only during sleep times. I agreed with great relief. is excited about starting " big school " in the Fall. He will now be in the same school as his big brother Trey who is a real mama hen with his little brother. The school is a K-12 with a cirriculum very similar to the Waldorf schools and class size is limited to ten students. It is operated by Shambhala- an international Buddhist organization- and is non-denominational. I haven't been participating in the group too much lately, but am an avid lurker! My husband and I figured that running two businesses left us with just enough time to start up a third! I am the personification of the headless chicken. The cost of living in Nova Scotia is rather high, and two kids in private school this year will cost more than if we had them in university- ah, well. The boys and I are off to the " playboat " down at the harbor. 's favorite thing is to stand in the wheel house and bellow " iceberg! dead ahead! " Best to you all~ Mom to Trey ( " when can I drive the car? " -11) and ( " shut up Trey " -5 PMG) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 Izaiah and my son sound very similar. just turned 15 months old. He sits propped well and will sit alone briefly befor he falls, although lately he has started to use his hands to break his fall. He walks if you hold both his hands and will stand while holding on to you. also LOVES toys with buttons to push for music and lights. He also likes mommy's metal measuring cups. The tone in his arms and legs has gotten better to allow him more mobility including being able to take small bites of his cookies until he gets excited and " freezes up " . Then he gets mad and starts to cry. He also has vision delay which has gotten better with therapy. We constantly have him involved in something. We are probably going to try Botox when he turns 18 months. ha seizures controlled by Zonegran. He, too, is very happy, loves to laugh and be carried around the house. in Houston --- izaiahmom2001 wrote: > Hi everyone-I guess I'll give a quick overview of > Izaiah. Izaiah is > 11 mths old (will be a yr old Aug 28!!) and he has > diffuse PMG along > w/ another brain abnormality called > holoprosencephaly (HPE). This > means he has some fusion in the midbrain and some > underdevelopment > there also. He has the mihf form of HPE. He was a > preemie and > weighed 3 lbs 5 oz at birth and now weighs 15 > lbs-still a little > guy! He takes a bottle and baby food from a spoon > but does not > finger feed himself. He was also born w/ a clubfoot > that has been > repaired and a cleft palate that has been partially > repaired. The > repair will be finished on Sept. 24. He has CVI and > we see a Ped. > Opthm. this Friday and start vision therapy soon > after. He had > myclonic seizures for about a mth and a 1/2 this > yr-from mid Marc-to > May 8...then after the EEG they went away and he > hasn't had another > one. He was prescribed Topamax but we have not gave > it to him yet > because we have seen no sign of seizures. > Developmentally he is delayed. He can sit a few > seconds and can sit > very well w/ MINIMAL support. He can stand and even > stand by himself > if holding onto the souch-but he doesn't pull up. > He takes tiny > steps if his hands are held. He doesn't crawl but > does prop on all > 4s and can kinda army crawl. He laughs, coos, and > goos-but no real > words. He doesn't play w/ toys much-but that could > be due to > vision. His therapists seem to think he is reaching > more and > purposefully playing and he is even learning cause > and effect!! (ie. > peek-a-boo). It seems as if he is almost there on a > lot of skills but > he is lagging behind. He is a happy baby and very > easy to care for- > so content to sit around and yell and suck on his > thumb. He also > loves anything that plays music and has lights. He > has no teeth yet- > but we think he is cutting some. > Thats about it-not much new to report. I hope all > is well and > everyone is feeling better. Welcome to the new > people-we have almost > made it a yr-and honestly it wasn't bad at all-not > NEAR as horrible > as I thought it would be!! > Jen and Izaiah > http://izaiahnc.tripod.com/ > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 & Sorry to hear Austin has had such a rough time. Poor kiddo must be worn out. Bummer too about the seizures. I have Epilim on hand ready for when Hannah is completely off the keto diet. So far so good with seizures, some days are worse than others, but I dont want to add another drug unless I have to, as there has never been a drug which really helped her, but they all have had side effects. Ho hum. A gastrostomy tube will make things easier. Hannah never had an NG tube, but the gtube has been fantastic. Best choice we ever made for her. We see Don Cameron, how about you? Best wishes to you as you make choices about feeding buttons etc. I wonder if having the NG tube first makes the prospect of tube feeds less " scary " ? I hope so. If you have any questions about gtubes I'd be happy to help if I can. Take care, and hugs to all of you. (Hannah's mum, Ringwood) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 & Sorry to hear Austin has had such a rough time. Poor kiddo must be worn out. Bummer too about the seizures. I have Epilim on hand ready for when Hannah is completely off the keto diet. So far so good with seizures, some days are worse than others, but I dont want to add another drug unless I have to, as there has never been a drug which really helped her, but they all have had side effects. Ho hum. A gastrostomy tube will make things easier. Hannah never had an NG tube, but the gtube has been fantastic. Best choice we ever made for her. We see Don Cameron, how about you? Best wishes to you as you make choices about feeding buttons etc. I wonder if having the NG tube first makes the prospect of tube feeds less " scary " ? I hope so. If you have any questions about gtubes I'd be happy to help if I can. Take care, and hugs to all of you. (Hannah's mum, Ringwood) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 & Sorry to hear Austin has had such a rough time. Poor kiddo must be worn out. Bummer too about the seizures. I have Epilim on hand ready for when Hannah is completely off the keto diet. So far so good with seizures, some days are worse than others, but I dont want to add another drug unless I have to, as there has never been a drug which really helped her, but they all have had side effects. Ho hum. A gastrostomy tube will make things easier. Hannah never had an NG tube, but the gtube has been fantastic. Best choice we ever made for her. We see Don Cameron, how about you? Best wishes to you as you make choices about feeding buttons etc. I wonder if having the NG tube first makes the prospect of tube feeds less " scary " ? I hope so. If you have any questions about gtubes I'd be happy to help if I can. Take care, and hugs to all of you. (Hannah's mum, Ringwood) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Thanks , Austin goes to RCH in last week of Sept. for her operation for the tube. We just hope she's well between now & then, or else they won't do it, because of her complications and the highr risk. She'll need all her strength. We have Tony Catto- and Prof. will be doing her Op. He spoke with us 2 weeks ago, he seems nice. & julie Austin's Dad & Mum (Glg, Aust.) --- " GAVAN J. CANAVAN " wrote: > & > > Sorry to hear Austin has had such a rough time. Poor > kiddo must be worn out. Bummer too about the > seizures. I have Epilim on hand ready for when > Hannah is completely off the keto diet. So far so > good with seizures, some days are worse than others, > but I dont want to add another drug unless I have > to, as there has never been a drug which really > helped her, but they all have had side effects. Ho > hum. > > A gastrostomy tube will make things easier. Hannah > never had an NG tube, but the gtube has been > fantastic. Best choice we ever made for her. We see > Don Cameron, how about you? Best wishes to you as > you make choices about feeding buttons etc. I wonder > if having the NG tube first makes the prospect of > tube feeds less " scary " ? I hope so. If you have any > questions about gtubes I'd be happy to help if I > can. > > Take care, and hugs to all of you. > (Hannah's mum, Ringwood) > > > > [Non-text portions of this message have been > removed] > > http://digital.yahoo.com.au - Yahoo! Digital How To - Get the best out of your PC! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Thanks , Austin goes to RCH in last week of Sept. for her operation for the tube. We just hope she's well between now & then, or else they won't do it, because of her complications and the highr risk. She'll need all her strength. We have Tony Catto- and Prof. will be doing her Op. He spoke with us 2 weeks ago, he seems nice. & julie Austin's Dad & Mum (Glg, Aust.) --- " GAVAN J. CANAVAN " wrote: > & > > Sorry to hear Austin has had such a rough time. Poor > kiddo must be worn out. Bummer too about the > seizures. I have Epilim on hand ready for when > Hannah is completely off the keto diet. So far so > good with seizures, some days are worse than others, > but I dont want to add another drug unless I have > to, as there has never been a drug which really > helped her, but they all have had side effects. Ho > hum. > > A gastrostomy tube will make things easier. Hannah > never had an NG tube, but the gtube has been > fantastic. Best choice we ever made for her. We see > Don Cameron, how about you? Best wishes to you as > you make choices about feeding buttons etc. I wonder > if having the NG tube first makes the prospect of > tube feeds less " scary " ? I hope so. If you have any > questions about gtubes I'd be happy to help if I > can. > > Take care, and hugs to all of you. > (Hannah's mum, Ringwood) > > > > [Non-text portions of this message have been > removed] > > http://digital.yahoo.com.au - Yahoo! Digital How To - Get the best out of your PC! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Sally, I was really happy to read your post, although I don't know you. I joined the group about 6 months ago--my daughter is 16 with no definite diagnosis. She is microcephalic, has agenesis of the corpus callosum, CVI and a few other goodies thrown in. I just wanted to tell you that she started walking at age 7, and still has trouble with uneven surfaces or changing elevation. Apparently her vision impairment does not allow for depth perception. We cue her verbally when she must " step up " or " step down " . With cues and using the hand railing she can board her school bus independently. She is non-verbal, but can understand anything she wants to hear--and see anything she wants to see. The other thing I wanted to tell you is that has shown the most improvement from swim therapy and hippotherapy. I'm convinced that those two things got her up & walking. Best of all good wishes to you and . It sounds like you're doing a great job! Cheri in Washington state, mom to Roll Call Hi Everyone, I thought I would rollcall since it has been awhile since I have posted. just turned 3 1/2 and continues to progress. For those of you that don't know him, he was diagnosed with BPNH with a patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh (Harvard Research Group). started officially walking in June when he was about 3. He is able to walk on smooth surfaces but not uneven ones (grass etc.). He isn't able to stand up without grabbing onto something but we are working on it. His receptive language is great, we sometimes have to spell words like video and we still think he gets it. He vocalizes alot now when you speak to him and occasionally we hear a real word come out. He definitely says " yeah " for yes alot of the time, especially when we ask him whether he wants to play on the computer! He still isn't able to point with just one finger but now has started to pseudo point with his whole hand. He waves hello and goodbye to people. He doesn't really enjoy playing too much, just videos, thumbing through books and the computer. His teacher thought that he doesn't like to play with toys because its almost like work for him, hard to manipulate things so he gets frustrated and we think she is right. He goes to fullday preschool. The school is just phenomenal... it is mostly for kids with pdd or autism so Mattie is a little different for them. There are seven children, 4 aides (matthew has his own) and one teacher. They do modified discreet trial there and we really belief that is why we are seeing so much progress with his receptive and expressive language (new babbling anyway). He gets OT, PT, Speech in school and then Speech once a week at home (to help us with his oral motor problems, he can't sip from a straw and has a lot of problems with new foods but is an oral eater). We also just got his first augmentative device (cheaptalk). the school lent it to us and he uses pecs cards to communicate sometimes. He also goes to hippotherapy once a week ... he is on the horse for an hour and we think this is also amazing therapy too. has a little sister Audrey who is typically developing. I honestly believe that 's babbling recently is also the result of him trying to model after his sister who at 17 months is singing the alphabet song! We are so proud of him and her and although we were scared too about a second child, we decided to take the risk and believe that Audrey his sister is his best therapy. I pray for all of you that are trying so hard to control the seizures, I can only imagine how difficult that must be. Didn't mean to ramble alot... just wanted to share our story. Most of all just want to remind everyone to stay positive as much as you can and keep the faith, Sally Mom to who amazes me everyday with his smile and determination Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Sally, I was really happy to read your post, although I don't know you. I joined the group about 6 months ago--my daughter is 16 with no definite diagnosis. She is microcephalic, has agenesis of the corpus callosum, CVI and a few other goodies thrown in. I just wanted to tell you that she started walking at age 7, and still has trouble with uneven surfaces or changing elevation. Apparently her vision impairment does not allow for depth perception. We cue her verbally when she must " step up " or " step down " . With cues and using the hand railing she can board her school bus independently. She is non-verbal, but can understand anything she wants to hear--and see anything she wants to see. The other thing I wanted to tell you is that has shown the most improvement from swim therapy and hippotherapy. I'm convinced that those two things got her up & walking. Best of all good wishes to you and . It sounds like you're doing a great job! Cheri in Washington state, mom to Roll Call Hi Everyone, I thought I would rollcall since it has been awhile since I have posted. just turned 3 1/2 and continues to progress. For those of you that don't know him, he was diagnosed with BPNH with a patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh (Harvard Research Group). started officially walking in June when he was about 3. He is able to walk on smooth surfaces but not uneven ones (grass etc.). He isn't able to stand up without grabbing onto something but we are working on it. His receptive language is great, we sometimes have to spell words like video and we still think he gets it. He vocalizes alot now when you speak to him and occasionally we hear a real word come out. He definitely says " yeah " for yes alot of the time, especially when we ask him whether he wants to play on the computer! He still isn't able to point with just one finger but now has started to pseudo point with his whole hand. He waves hello and goodbye to people. He doesn't really enjoy playing too much, just videos, thumbing through books and the computer. His teacher thought that he doesn't like to play with toys because its almost like work for him, hard to manipulate things so he gets frustrated and we think she is right. He goes to fullday preschool. The school is just phenomenal... it is mostly for kids with pdd or autism so Mattie is a little different for them. There are seven children, 4 aides (matthew has his own) and one teacher. They do modified discreet trial there and we really belief that is why we are seeing so much progress with his receptive and expressive language (new babbling anyway). He gets OT, PT, Speech in school and then Speech once a week at home (to help us with his oral motor problems, he can't sip from a straw and has a lot of problems with new foods but is an oral eater). We also just got his first augmentative device (cheaptalk). the school lent it to us and he uses pecs cards to communicate sometimes. He also goes to hippotherapy once a week ... he is on the horse for an hour and we think this is also amazing therapy too. has a little sister Audrey who is typically developing. I honestly believe that 's babbling recently is also the result of him trying to model after his sister who at 17 months is singing the alphabet song! We are so proud of him and her and although we were scared too about a second child, we decided to take the risk and believe that Audrey his sister is his best therapy. I pray for all of you that are trying so hard to control the seizures, I can only imagine how difficult that must be. Didn't mean to ramble alot... just wanted to share our story. Most of all just want to remind everyone to stay positive as much as you can and keep the faith, Sally Mom to who amazes me everyday with his smile and determination Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 Dear Sally, Happy for you that all is going so well. Sounds amazing. What is modified discreet trial. I've never heard of it. - Bivens Roll Call > Hi Everyone, > > I thought I would rollcall since it has been awhile since I have > posted. just turned 3 1/2 and continues to progress. For > those of you that don't know him, he was diagnosed with BPNH with a > patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh > (Harvard Research Group). started officially walking in June > when he was about 3. He is able to walk on smooth surfaces but not > uneven ones (grass etc.). He isn't able to stand up without grabbing > onto something but we are working on it. His receptive language is > great, we sometimes have to spell words like video and we still think > he gets it. He vocalizes alot now when you speak to him and > occasionally we hear a real word come out. He definitely says " yeah " > for yes alot of the time, especially when we ask him whether he wants > to play on the computer! He still isn't able to point with just one > finger but now has started to pseudo point with his whole hand. He > waves hello and goodbye to people. He doesn't really enjoy playing > too much, just videos, thumbing through books and the computer. His > teacher thought that he doesn't like to play with toys because its > almost like work for him, hard to manipulate things so he gets > frustrated and we think she is right. He goes to fullday preschool. > The school is just phenomenal... it is mostly for kids with pdd or > autism so Mattie is a little different for them. There are seven > children, 4 aides (matthew has his own) and one teacher. They do > modified discreet trial there and we really belief that is why we are > seeing so much progress with his receptive and expressive language > (new babbling anyway). He gets OT, PT, Speech in school and then > Speech once a week at home (to help us with his oral motor problems, > he can't sip from a straw and has a lot of problems with new foods > but is an oral eater). We also just got his first augmentative > device (cheaptalk). the school lent it to us and he uses pecs cards > to communicate sometimes. He also goes to hippotherapy once a > week ... he is on the horse for an hour and we think this is also > amazing therapy too. has a little sister Audrey who is > typically developing. I honestly believe that 's babbling > recently is also the result of him trying to model after his sister > who at 17 months is singing the alphabet song! We are so proud of > him and her and although we were scared too about a second child, we > decided to take the risk and believe that Audrey his sister is his > best therapy. > > I pray for all of you that are trying so hard to control the > seizures, I can only imagine how difficult that must be. Didn't mean > to ramble alot... just wanted to share our story. Most of all just > want to remind everyone to stay positive as much as you can and keep > the faith, > > Sally Mom to who amazes me everyday with his smile and > determination > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 I don't post that often but decided to roll call. My son, Trevor, is 7 years old now. He attends a visually impaired class at the local public school. He has moderate PMG and BPNH, seizure disorder,agenesis of corpus callosum,hydrocheyelus(shunted 7/99),Dandy variant,panhypopititurism,optic nerve hypoplasia, cortical visual impairment and is mild to moderate mentally handicapped..................whew, I think that is it. He sat up at 8 1/2 months,cruised furniture at 11 months, walked independently at 21 1/2 months, starting speaking more than 3 words at 2 1/2 years old. He has Speech and Occupational therapy in school. He also goes to private Speech 2x a week, OT 2x a week and PT(pool therapy) 1x a week and we tried horse therapy for about 10 sessions. It was very good but had to discontinue because of the long drive to get there. We've been doing this it seems like all his life. Its just our weekly routine. Absence seizures are what we are dealing with lately. He currently takes 750mg of Trileptal. Haven't seen any partial complex ones since he was hospitalized with a virus back in Sept. so that's good. Its just these darn staring spells. He tells me he doesn't feel good and that his eyes hurt. We had a 6 hour EEG done last Friday and I'm anxiously awaiting the results. This is his 5th seizure med so far and still no control. Have an neuro appt. next Wednesday. We'll probably start discussing the VNS. What are the results for children under 12 yrs old? O.k. that's it from here in South Carolina. Take care everyone, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Hello everyone~ Things have been way busy here- I just did T-giving dinner for 18 of hubby's family. How do I get myself into these things? All I did was mention that I still celebrate American Thanksgiving for the boys when we were all at my in-laws' for Canadian T-giving (actually Columbus Day :-) Any excuse for a party! continues to do very well at 'big boy' school. He is the oldest (6) in his grade Primary class (Kindergarten), but his best friend at school is only a few weeks behind. There are nine in the class, with four of them coming only in the morning. This gives plenty of one-on-one time. He surprised me this month with suddenly starting to read. I've been going over phonetics with him in a rather haphazard way, but over the past few weeks it seems to have really clicked for him. He is also gaining better control of his left arm, and his recent big accomplishment is successful jumping jacks. My husband and I were so thrilled, we had an impromptu party for him. has not had a tonic-clonic since the beginning of September. His seizure activity has morphed into simple-partials that involve only his left arm and leg. They will draw up quite stiff and rigid and then start a rhythmic jerk. They only last 10-20 seconds, and only happen when he first wakes up. I was able to get him to sing a song with me and swing his right arm in time to the song while he was having one of these seizures, so I think they are very much isolated to the section of his brain affected by the PMG. The last seizure was October 23, and I still have seen no need to put him on seizure meds. still has a lot of trouble with his left hand. He can grasp things a bit better, but has no control over the thumb and pinkie finger. We have to be very careful when he dresses that his fingers don't get bent backwards when he pushes them through a sleeve. My very best wishes to all of you ~ Mom to Trey ('I will now play Scotland the Brave'-11) and ('Oh please NO not again!'- 6-PMG) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Hello everyone~ Things have been way busy here- I just did T-giving dinner for 18 of hubby's family. How do I get myself into these things? All I did was mention that I still celebrate American Thanksgiving for the boys when we were all at my in-laws' for Canadian T-giving (actually Columbus Day :-) Any excuse for a party! continues to do very well at 'big boy' school. He is the oldest (6) in his grade Primary class (Kindergarten), but his best friend at school is only a few weeks behind. There are nine in the class, with four of them coming only in the morning. This gives plenty of one-on-one time. He surprised me this month with suddenly starting to read. I've been going over phonetics with him in a rather haphazard way, but over the past few weeks it seems to have really clicked for him. He is also gaining better control of his left arm, and his recent big accomplishment is successful jumping jacks. My husband and I were so thrilled, we had an impromptu party for him. has not had a tonic-clonic since the beginning of September. His seizure activity has morphed into simple-partials that involve only his left arm and leg. They will draw up quite stiff and rigid and then start a rhythmic jerk. They only last 10-20 seconds, and only happen when he first wakes up. I was able to get him to sing a song with me and swing his right arm in time to the song while he was having one of these seizures, so I think they are very much isolated to the section of his brain affected by the PMG. The last seizure was October 23, and I still have seen no need to put him on seizure meds. still has a lot of trouble with his left hand. He can grasp things a bit better, but has no control over the thumb and pinkie finger. We have to be very careful when he dresses that his fingers don't get bent backwards when he pushes them through a sleeve. My very best wishes to all of you ~ Mom to Trey ('I will now play Scotland the Brave'-11) and ('Oh please NO not again!'- 6-PMG) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Hello everyone~ Things have been way busy here- I just did T-giving dinner for 18 of hubby's family. How do I get myself into these things? All I did was mention that I still celebrate American Thanksgiving for the boys when we were all at my in-laws' for Canadian T-giving (actually Columbus Day :-) Any excuse for a party! continues to do very well at 'big boy' school. He is the oldest (6) in his grade Primary class (Kindergarten), but his best friend at school is only a few weeks behind. There are nine in the class, with four of them coming only in the morning. This gives plenty of one-on-one time. He surprised me this month with suddenly starting to read. I've been going over phonetics with him in a rather haphazard way, but over the past few weeks it seems to have really clicked for him. He is also gaining better control of his left arm, and his recent big accomplishment is successful jumping jacks. My husband and I were so thrilled, we had an impromptu party for him. has not had a tonic-clonic since the beginning of September. His seizure activity has morphed into simple-partials that involve only his left arm and leg. They will draw up quite stiff and rigid and then start a rhythmic jerk. They only last 10-20 seconds, and only happen when he first wakes up. I was able to get him to sing a song with me and swing his right arm in time to the song while he was having one of these seizures, so I think they are very much isolated to the section of his brain affected by the PMG. The last seizure was October 23, and I still have seen no need to put him on seizure meds. still has a lot of trouble with his left hand. He can grasp things a bit better, but has no control over the thumb and pinkie finger. We have to be very careful when he dresses that his fingers don't get bent backwards when he pushes them through a sleeve. My very best wishes to all of you ~ Mom to Trey ('I will now play Scotland the Brave'-11) and ('Oh please NO not again!'- 6-PMG) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Cheri, It's nice to read about and her accomplishments. That is just so fantastic that she can get on the bus independently. We bought a minivan with the electric doors and and the whole goal was that someday we hope he will be able to walk from the garage to the driveway (and manage the difference) and climb into the van! I think the same thing that its depth perception with him. We cue him always going up the steps, step up, step down etc and especially on ramp stuff he tends to step rather than go up. I was interested in the swim therapy.. is low tone? is and I did typical swimming classes with him but never therapeutic. He ended up liking it ok and since he has been in school I haven't started it back up. We just started a sensory diet for Mattie too, doing facial stimulation and a lot of deep pressure on him before meals and using a brush. I swear I can squeeze his hand as hard as I want and he enjoys it. He loves to be touched but not softly and we think he is calmer when he eats because of we do this before meals. The school is doing it as well because you are supposed to do it every two hours. Did you ever try that with ? Thanks again for writing, I love to hear about how all the kids are doing. Sally and Mattie > Sally, > > I was really happy to read your post, although I don't know you. I joined the group about 6 months ago--my daughter is 16 with no definite diagnosis. She is microcephalic, has agenesis of the corpus callosum, CVI and a few other goodies thrown in. I just wanted to tell you that she started walking at age 7, and still has trouble with uneven surfaces or changing elevation. Apparently her vision impairment does not allow for depth perception. We cue her verbally when she must " step up " or " step down " . With cues and using the hand railing she can board her school bus independently. She is non- verbal, but can understand anything she wants to hear--and see anything she wants to see. The other thing I wanted to tell you is that has shown the most improvement from swim therapy and hippotherapy. I'm convinced that those two things got her up & walking. Best of all good wishes to you and . It sounds like you're doing a great job! > > Cheri in Washington state, mom to > > Roll Call > > Hi Everyone, > > I thought I would rollcall since it has been awhile since I have > posted. just turned 3 1/2 and continues to progress. For > those of you that don't know him, he was diagnosed with BPNH with a > patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh > (Harvard Research Group). started officially walking in June > when he was about 3. He is able to walk on smooth surfaces but not > uneven ones (grass etc.). He isn't able to stand up without grabbing > onto something but we are working on it. His receptive language is > great, we sometimes have to spell words like video and we still think > he gets it. He vocalizes alot now when you speak to him and > occasionally we hear a real word come out. He definitely says " yeah " > for yes alot of the time, especially when we ask him whether he wants > to play on the computer! He still isn't able to point with just one > finger but now has started to pseudo point with his whole hand. He > waves hello and goodbye to people. He doesn't really enjoy playing > too much, just videos, thumbing through books and the computer. His > teacher thought that he doesn't like to play with toys because its > almost like work for him, hard to manipulate things so he gets > frustrated and we think she is right. He goes to fullday preschool. > The school is just phenomenal... it is mostly for kids with pdd or > autism so Mattie is a little different for them. There are seven > children, 4 aides (matthew has his own) and one teacher. They do > modified discreet trial there and we really belief that is why we are > seeing so much progress with his receptive and expressive language > (new babbling anyway). He gets OT, PT, Speech in school and then > Speech once a week at home (to help us with his oral motor problems, > he can't sip from a straw and has a lot of problems with new foods > but is an oral eater). We also just got his first augmentative > device (cheaptalk). the school lent it to us and he uses pecs cards > to communicate sometimes. He also goes to hippotherapy once a > week ... he is on the horse for an hour and we think this is also > amazing therapy too. has a little sister Audrey who is > typically developing. I honestly believe that 's babbling > recently is also the result of him trying to model after his sister > who at 17 months is singing the alphabet song! We are so proud of > him and her and although we were scared too about a second child, we > decided to take the risk and believe that Audrey his sister is his > best therapy. > > I pray for all of you that are trying so hard to control the > seizures, I can only imagine how difficult that must be. Didn't mean > to ramble alot... just wanted to share our story. Most of all just > want to remind everyone to stay positive as much as you can and keep > the faith, > > Sally Mom to who amazes me everyday with his smile and > determination > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Cheri, It's nice to read about and her accomplishments. That is just so fantastic that she can get on the bus independently. We bought a minivan with the electric doors and and the whole goal was that someday we hope he will be able to walk from the garage to the driveway (and manage the difference) and climb into the van! I think the same thing that its depth perception with him. We cue him always going up the steps, step up, step down etc and especially on ramp stuff he tends to step rather than go up. I was interested in the swim therapy.. is low tone? is and I did typical swimming classes with him but never therapeutic. He ended up liking it ok and since he has been in school I haven't started it back up. We just started a sensory diet for Mattie too, doing facial stimulation and a lot of deep pressure on him before meals and using a brush. I swear I can squeeze his hand as hard as I want and he enjoys it. He loves to be touched but not softly and we think he is calmer when he eats because of we do this before meals. The school is doing it as well because you are supposed to do it every two hours. Did you ever try that with ? Thanks again for writing, I love to hear about how all the kids are doing. Sally and Mattie > Sally, > > I was really happy to read your post, although I don't know you. I joined the group about 6 months ago--my daughter is 16 with no definite diagnosis. She is microcephalic, has agenesis of the corpus callosum, CVI and a few other goodies thrown in. I just wanted to tell you that she started walking at age 7, and still has trouble with uneven surfaces or changing elevation. Apparently her vision impairment does not allow for depth perception. We cue her verbally when she must " step up " or " step down " . With cues and using the hand railing she can board her school bus independently. She is non- verbal, but can understand anything she wants to hear--and see anything she wants to see. The other thing I wanted to tell you is that has shown the most improvement from swim therapy and hippotherapy. I'm convinced that those two things got her up & walking. Best of all good wishes to you and . It sounds like you're doing a great job! > > Cheri in Washington state, mom to > > Roll Call > > Hi Everyone, > > I thought I would rollcall since it has been awhile since I have > posted. just turned 3 1/2 and continues to progress. For > those of you that don't know him, he was diagnosed with BPNH with a > patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh > (Harvard Research Group). started officially walking in June > when he was about 3. He is able to walk on smooth surfaces but not > uneven ones (grass etc.). He isn't able to stand up without grabbing > onto something but we are working on it. His receptive language is > great, we sometimes have to spell words like video and we still think > he gets it. He vocalizes alot now when you speak to him and > occasionally we hear a real word come out. He definitely says " yeah " > for yes alot of the time, especially when we ask him whether he wants > to play on the computer! He still isn't able to point with just one > finger but now has started to pseudo point with his whole hand. He > waves hello and goodbye to people. He doesn't really enjoy playing > too much, just videos, thumbing through books and the computer. His > teacher thought that he doesn't like to play with toys because its > almost like work for him, hard to manipulate things so he gets > frustrated and we think she is right. He goes to fullday preschool. > The school is just phenomenal... it is mostly for kids with pdd or > autism so Mattie is a little different for them. There are seven > children, 4 aides (matthew has his own) and one teacher. They do > modified discreet trial there and we really belief that is why we are > seeing so much progress with his receptive and expressive language > (new babbling anyway). He gets OT, PT, Speech in school and then > Speech once a week at home (to help us with his oral motor problems, > he can't sip from a straw and has a lot of problems with new foods > but is an oral eater). We also just got his first augmentative > device (cheaptalk). the school lent it to us and he uses pecs cards > to communicate sometimes. He also goes to hippotherapy once a > week ... he is on the horse for an hour and we think this is also > amazing therapy too. has a little sister Audrey who is > typically developing. I honestly believe that 's babbling > recently is also the result of him trying to model after his sister > who at 17 months is singing the alphabet song! We are so proud of > him and her and although we were scared too about a second child, we > decided to take the risk and believe that Audrey his sister is his > best therapy. > > I pray for all of you that are trying so hard to control the > seizures, I can only imagine how difficult that must be. Didn't mean > to ramble alot... just wanted to share our story. Most of all just > want to remind everyone to stay positive as much as you can and keep > the faith, > > Sally Mom to who amazes me everyday with his smile and > determination > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi , I copied this from an autism website. Lovaas developed this but many people believe that its a little too stringent approach. His school does this as well as floortime approach which says to follow the childs lead. That's why it's considered " modified " at his school I think. Discreet Trial is a very systematic approach to teaching and learning. " Tasks " are presented in repetition to the child over a set time period. Correct responses are strongly reinforced, while consequences for non-compliance are also reinforced. For example, to teach a young child to " sit " , the child would be instructed to " sit " repeatedly over a predetermined time period. If the child sat, s/he would be rewarded. If not, there would be a consequence. We does this at home to make sure he keeps eye contact etc, reinforcing him when he does it. To me this is kind of what most people do at home, just not so structured. They do keep track of his progress using a notebook writing done the trials, when he reaches a certain percentage of getting it right then he moves onto something else. He is a kid that really needs so much repitition to get it so we feel this is a good approach. I have a hard time explaining it but when we looked at schools we knew we wanted this approach because he is so distractable. Hope you are having a great holiday season, Sally > Dear Sally, > Happy for you that all is going so well. Sounds amazing. > What is modified discreet trial. I've never heard of it. > - Bivens > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi Sally & Group: Today is 17. At 6 months the ped. neuro told us she was blind, deaf and would never sit up. This morning before school she ate toast by herself, drank juice by herself and assisted with her undressing & dressing. She is a beautiful girl (4'7 " , 83 lb.) and went to school wearing chocolate brown courduroy stretch jeans and a brown/tan striped sweater, and got herself on the bus and kissed her friend on the way to her seat (so what if that's not ok?). Birthdays are hard, even as wonderfully as is doing. About swim therapy: has mixed tone. We started by dragging her around the therapy pool on her back while she was wearing a life jacket with a behind-the-head section (to keep her head out of the water) and a pull strap. 6 months later she was launching herself into the pool, grabbing the edge and blowing bubbles. At age 3 she entered a developmental preschool where there is a therapy pool in the building. She had a fantastic swim teacher trained in adapted aquatics and by age 4 was standing up and taking steps in the water. By age 7 she walked on land and could swim the width of the pool using what they call a " survival stroke " . Now in high school, she swims every day for PE, and can make 5 round trips in an Olympic sized pool. She jumps into the pool on her own and uses the ladder to climb out. About sensory integration/feeding issues: had pre-speech & feeding therapy from 6 months. You can't imagine how many times I dragged her, high chair & all to therapy! We started with textures on her hands & feet, then moved to arms & legs & face. At that time we also do deep pressure to her hands (placing them on the floor & pushing down) and feet. We also do joint compressions on all joints in her arms & legs. I credit this therapy for the fact that does not drool and is reasonably proficient at chewing & swallowing. She has only had two episodes of aspiration pneumonia in her life--both before age 5. Oops, we also cue to pick up a spoon by pressing her hand on the tabletop when we expect her to pick up her utensil (only semi-successful at self-feeding--about 4 bites per meal). Gentle or tentative touches drive crazy; firm is what works for her. I don't mean to just brag here. My intention is to give everyone the inspiration to go on & on & on & on & on with therapy, because it all pays off in the end. You are all wonderful parents, and you are the ones who will make a difference in your child's life. Best Wishes, Cheri in Washington state, mom to (no diagnosis) microcephaly, agenesis of the CC, CVI, Hearing loss, no brain convolutions, right on the cusp of profoundly MR, and as cute as they come. Roll Call > > Hi Everyone, > > I thought I would rollcall since it has been awhile since I have > posted. just turned 3 1/2 and continues to progress. For > those of you that don't know him, he was diagnosed with BPNH with a > patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh > (Harvard Research Group). started officially walking in June > when he was about 3. He is able to walk on smooth surfaces but not > uneven ones (grass etc.). He isn't able to stand up without grabbing > onto something but we are working on it. His receptive language is > great, we sometimes have to spell words like video and we still think > he gets it. He vocalizes alot now when you speak to him and > occasionally we hear a real word come out. He definitely says " yeah " > for yes alot of the time, especially when we ask him whether he wants > to play on the computer! He still isn't able to point with just one > finger but now has started to pseudo point with his whole hand. He > waves hello and goodbye to people. He doesn't really enjoy playing > too much, just videos, thumbing through books and the computer. His > teacher thought that he doesn't like to play with toys because its > almost like work for him, hard to manipulate things so he gets > frustrated and we think she is right. He goes to fullday preschool. > The school is just phenomenal... it is mostly for kids with pdd or > autism so Mattie is a little different for them. There are seven > children, 4 aides (matthew has his own) and one teacher. They do > modified discreet trial there and we really belief that is why we are > seeing so much progress with his receptive and expressive language > (new babbling anyway). He gets OT, PT, Speech in school and then > Speech once a week at home (to help us with his oral motor problems, > he can't sip from a straw and has a lot of problems with new foods > but is an oral eater). We also just got his first augmentative > device (cheaptalk). the school lent it to us and he uses pecs cards > to communicate sometimes. He also goes to hippotherapy once a > week ... he is on the horse for an hour and we think this is also > amazing therapy too. has a little sister Audrey who is > typically developing. I honestly believe that 's babbling > recently is also the result of him trying to model after his sister > who at 17 months is singing the alphabet song! We are so proud of > him and her and although we were scared too about a second child, we > decided to take the risk and believe that Audrey his sister is his > best therapy. > > I pray for all of you that are trying so hard to control the > seizures, I can only imagine how difficult that must be. Didn't mean > to ramble alot... just wanted to share our story. Most of all just > want to remind everyone to stay positive as much as you can and keep > the faith, > > Sally Mom to who amazes me everyday with his smile and > determination > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi Sally & Group: Today is 17. At 6 months the ped. neuro told us she was blind, deaf and would never sit up. This morning before school she ate toast by herself, drank juice by herself and assisted with her undressing & dressing. She is a beautiful girl (4'7 " , 83 lb.) and went to school wearing chocolate brown courduroy stretch jeans and a brown/tan striped sweater, and got herself on the bus and kissed her friend on the way to her seat (so what if that's not ok?). Birthdays are hard, even as wonderfully as is doing. About swim therapy: has mixed tone. We started by dragging her around the therapy pool on her back while she was wearing a life jacket with a behind-the-head section (to keep her head out of the water) and a pull strap. 6 months later she was launching herself into the pool, grabbing the edge and blowing bubbles. At age 3 she entered a developmental preschool where there is a therapy pool in the building. She had a fantastic swim teacher trained in adapted aquatics and by age 4 was standing up and taking steps in the water. By age 7 she walked on land and could swim the width of the pool using what they call a " survival stroke " . Now in high school, she swims every day for PE, and can make 5 round trips in an Olympic sized pool. She jumps into the pool on her own and uses the ladder to climb out. About sensory integration/feeding issues: had pre-speech & feeding therapy from 6 months. You can't imagine how many times I dragged her, high chair & all to therapy! We started with textures on her hands & feet, then moved to arms & legs & face. At that time we also do deep pressure to her hands (placing them on the floor & pushing down) and feet. We also do joint compressions on all joints in her arms & legs. I credit this therapy for the fact that does not drool and is reasonably proficient at chewing & swallowing. She has only had two episodes of aspiration pneumonia in her life--both before age 5. Oops, we also cue to pick up a spoon by pressing her hand on the tabletop when we expect her to pick up her utensil (only semi-successful at self-feeding--about 4 bites per meal). Gentle or tentative touches drive crazy; firm is what works for her. I don't mean to just brag here. My intention is to give everyone the inspiration to go on & on & on & on & on with therapy, because it all pays off in the end. You are all wonderful parents, and you are the ones who will make a difference in your child's life. Best Wishes, Cheri in Washington state, mom to (no diagnosis) microcephaly, agenesis of the CC, CVI, Hearing loss, no brain convolutions, right on the cusp of profoundly MR, and as cute as they come. Roll Call > > Hi Everyone, > > I thought I would rollcall since it has been awhile since I have > posted. just turned 3 1/2 and continues to progress. For > those of you that don't know him, he was diagnosed with BPNH with a > patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh > (Harvard Research Group). started officially walking in June > when he was about 3. He is able to walk on smooth surfaces but not > uneven ones (grass etc.). He isn't able to stand up without grabbing > onto something but we are working on it. His receptive language is > great, we sometimes have to spell words like video and we still think > he gets it. He vocalizes alot now when you speak to him and > occasionally we hear a real word come out. He definitely says " yeah " > for yes alot of the time, especially when we ask him whether he wants > to play on the computer! He still isn't able to point with just one > finger but now has started to pseudo point with his whole hand. He > waves hello and goodbye to people. He doesn't really enjoy playing > too much, just videos, thumbing through books and the computer. His > teacher thought that he doesn't like to play with toys because its > almost like work for him, hard to manipulate things so he gets > frustrated and we think she is right. He goes to fullday preschool. > The school is just phenomenal... it is mostly for kids with pdd or > autism so Mattie is a little different for them. There are seven > children, 4 aides (matthew has his own) and one teacher. They do > modified discreet trial there and we really belief that is why we are > seeing so much progress with his receptive and expressive language > (new babbling anyway). He gets OT, PT, Speech in school and then > Speech once a week at home (to help us with his oral motor problems, > he can't sip from a straw and has a lot of problems with new foods > but is an oral eater). We also just got his first augmentative > device (cheaptalk). the school lent it to us and he uses pecs cards > to communicate sometimes. He also goes to hippotherapy once a > week ... he is on the horse for an hour and we think this is also > amazing therapy too. has a little sister Audrey who is > typically developing. I honestly believe that 's babbling > recently is also the result of him trying to model after his sister > who at 17 months is singing the alphabet song! We are so proud of > him and her and although we were scared too about a second child, we > decided to take the risk and believe that Audrey his sister is his > best therapy. > > I pray for all of you that are trying so hard to control the > seizures, I can only imagine how difficult that must be. Didn't mean > to ramble alot... just wanted to share our story. Most of all just > want to remind everyone to stay positive as much as you can and keep > the faith, > > Sally Mom to who amazes me everyday with his smile and > determination > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi Cheri, I can't thank you enough for sharing all of this. It is wonderful to hear how well she is doing and I appreciate the info on the Sensory stuff so much, this is an area we are really focusing on lately and any advice is so helpful. We all have bragging rights here, each accomplishment any of our children do is the biggest high I think we all could ever have, I believe this is one of the gifts you get when you have a child with needs.. that when they are finally able to accomplish what some consider a simple task the pride we get can't be measured, Thanks again for writing me back, I am definitely going to look into the swimming therapy now!! Sally and Mattie > > Sally, > > > > I was really happy to read your post, although I don't know you. I > joined the group about 6 months ago--my daughter is 16 with no > definite diagnosis. She is microcephalic, has agenesis of the corpus > callosum, CVI and a few other goodies thrown in. I just wanted to > tell you that she started walking at age 7, and still has trouble > with uneven surfaces or changing elevation. Apparently her vision > impairment does not allow for depth perception. We cue her verbally > when she must " step up " or " step down " . With cues and using the hand > railing she can board her school bus independently. She is non- > verbal, but can understand anything she wants to hear--and see > anything she wants to see. The other thing I wanted to tell you is > that has shown the most improvement from swim therapy and > hippotherapy. I'm convinced that those two things got her up & > walking. Best of all good wishes to you and . It sounds like > you're doing a great job! > > > > Cheri in Washington state, mom to > > > > Roll Call > > > > Hi Everyone, > > > > I thought I would rollcall since it has been awhile since I have > > posted. just turned 3 1/2 and continues to progress. For > > those of you that don't know him, he was diagnosed with BPNH with > a > > patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh > > (Harvard Research Group). started officially walking in > June > > when he was about 3. He is able to walk on smooth surfaces but > not > > uneven ones (grass etc.). He isn't able to stand up without > grabbing > > onto something but we are working on it. His receptive language > is > > great, we sometimes have to spell words like video and we still > think > > he gets it. He vocalizes alot now when you speak to him and > > occasionally we hear a real word come out. He definitely > says " yeah " > > for yes alot of the time, especially when we ask him whether he > wants > > to play on the computer! He still isn't able to point with just > one > > finger but now has started to pseudo point with his whole hand. > He > > waves hello and goodbye to people. He doesn't really enjoy > playing > > too much, just videos, thumbing through books and the computer. > His > > teacher thought that he doesn't like to play with toys because its > > almost like work for him, hard to manipulate things so he gets > > frustrated and we think she is right. He goes to fullday > preschool. > > The school is just phenomenal... it is mostly for kids with pdd or > > autism so Mattie is a little different for them. There are seven > > children, 4 aides (matthew has his own) and one teacher. They do > > modified discreet trial there and we really belief that is why we > are > > seeing so much progress with his receptive and expressive language > > (new babbling anyway). He gets OT, PT, Speech in school and then > > Speech once a week at home (to help us with his oral motor > problems, > > he can't sip from a straw and has a lot of problems with new foods > > but is an oral eater). We also just got his first augmentative > > device (cheaptalk). the school lent it to us and he uses pecs > cards > > to communicate sometimes. He also goes to hippotherapy once a > > week ... he is on the horse for an hour and we think this is also > > amazing therapy too. has a little sister Audrey who is > > typically developing. I honestly believe that 's babbling > > recently is also the result of him trying to model after his > sister > > who at 17 months is singing the alphabet song! We are so proud of > > him and her and although we were scared too about a second child, > we > > decided to take the risk and believe that Audrey his sister is his > > best therapy. > > > > I pray for all of you that are trying so hard to control the > > seizures, I can only imagine how difficult that must be. Didn't > mean > > to ramble alot... just wanted to share our story. Most of all > just > > want to remind everyone to stay positive as much as you can and > keep > > the faith, > > > > Sally Mom to who amazes me everyday with his smile and > > determination > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi Cheri, I can't thank you enough for sharing all of this. It is wonderful to hear how well she is doing and I appreciate the info on the Sensory stuff so much, this is an area we are really focusing on lately and any advice is so helpful. We all have bragging rights here, each accomplishment any of our children do is the biggest high I think we all could ever have, I believe this is one of the gifts you get when you have a child with needs.. that when they are finally able to accomplish what some consider a simple task the pride we get can't be measured, Thanks again for writing me back, I am definitely going to look into the swimming therapy now!! Sally and Mattie > > Sally, > > > > I was really happy to read your post, although I don't know you. I > joined the group about 6 months ago--my daughter is 16 with no > definite diagnosis. She is microcephalic, has agenesis of the corpus > callosum, CVI and a few other goodies thrown in. I just wanted to > tell you that she started walking at age 7, and still has trouble > with uneven surfaces or changing elevation. Apparently her vision > impairment does not allow for depth perception. We cue her verbally > when she must " step up " or " step down " . With cues and using the hand > railing she can board her school bus independently. She is non- > verbal, but can understand anything she wants to hear--and see > anything she wants to see. The other thing I wanted to tell you is > that has shown the most improvement from swim therapy and > hippotherapy. I'm convinced that those two things got her up & > walking. Best of all good wishes to you and . It sounds like > you're doing a great job! > > > > Cheri in Washington state, mom to > > > > Roll Call > > > > Hi Everyone, > > > > I thought I would rollcall since it has been awhile since I have > > posted. just turned 3 1/2 and continues to progress. For > > those of you that don't know him, he was diagnosed with BPNH with > a > > patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh > > (Harvard Research Group). started officially walking in > June > > when he was about 3. He is able to walk on smooth surfaces but > not > > uneven ones (grass etc.). He isn't able to stand up without > grabbing > > onto something but we are working on it. His receptive language > is > > great, we sometimes have to spell words like video and we still > think > > he gets it. He vocalizes alot now when you speak to him and > > occasionally we hear a real word come out. He definitely > says " yeah " > > for yes alot of the time, especially when we ask him whether he > wants > > to play on the computer! He still isn't able to point with just > one > > finger but now has started to pseudo point with his whole hand. > He > > waves hello and goodbye to people. He doesn't really enjoy > playing > > too much, just videos, thumbing through books and the computer. > His > > teacher thought that he doesn't like to play with toys because its > > almost like work for him, hard to manipulate things so he gets > > frustrated and we think she is right. He goes to fullday > preschool. > > The school is just phenomenal... it is mostly for kids with pdd or > > autism so Mattie is a little different for them. There are seven > > children, 4 aides (matthew has his own) and one teacher. They do > > modified discreet trial there and we really belief that is why we > are > > seeing so much progress with his receptive and expressive language > > (new babbling anyway). He gets OT, PT, Speech in school and then > > Speech once a week at home (to help us with his oral motor > problems, > > he can't sip from a straw and has a lot of problems with new foods > > but is an oral eater). We also just got his first augmentative > > device (cheaptalk). the school lent it to us and he uses pecs > cards > > to communicate sometimes. He also goes to hippotherapy once a > > week ... he is on the horse for an hour and we think this is also > > amazing therapy too. has a little sister Audrey who is > > typically developing. I honestly believe that 's babbling > > recently is also the result of him trying to model after his > sister > > who at 17 months is singing the alphabet song! We are so proud of > > him and her and although we were scared too about a second child, > we > > decided to take the risk and believe that Audrey his sister is his > > best therapy. > > > > I pray for all of you that are trying so hard to control the > > seizures, I can only imagine how difficult that must be. Didn't > mean > > to ramble alot... just wanted to share our story. Most of all > just > > want to remind everyone to stay positive as much as you can and > keep > > the faith, > > > > Sally Mom to who amazes me everyday with his smile and > > determination > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Hi Cheri, I can't thank you enough for sharing all of this. It is wonderful to hear how well she is doing and I appreciate the info on the Sensory stuff so much, this is an area we are really focusing on lately and any advice is so helpful. We all have bragging rights here, each accomplishment any of our children do is the biggest high I think we all could ever have, I believe this is one of the gifts you get when you have a child with needs.. that when they are finally able to accomplish what some consider a simple task the pride we get can't be measured, Thanks again for writing me back, I am definitely going to look into the swimming therapy now!! Sally and Mattie > > Sally, > > > > I was really happy to read your post, although I don't know you. I > joined the group about 6 months ago--my daughter is 16 with no > definite diagnosis. She is microcephalic, has agenesis of the corpus > callosum, CVI and a few other goodies thrown in. I just wanted to > tell you that she started walking at age 7, and still has trouble > with uneven surfaces or changing elevation. Apparently her vision > impairment does not allow for depth perception. We cue her verbally > when she must " step up " or " step down " . With cues and using the hand > railing she can board her school bus independently. She is non- > verbal, but can understand anything she wants to hear--and see > anything she wants to see. The other thing I wanted to tell you is > that has shown the most improvement from swim therapy and > hippotherapy. I'm convinced that those two things got her up & > walking. Best of all good wishes to you and . It sounds like > you're doing a great job! > > > > Cheri in Washington state, mom to > > > > Roll Call > > > > Hi Everyone, > > > > I thought I would rollcall since it has been awhile since I have > > posted. just turned 3 1/2 and continues to progress. For > > those of you that don't know him, he was diagnosed with BPNH with > a > > patch of PMG at 5 months by Dr. Dobyns and confirmed by Dr. Walsh > > (Harvard Research Group). started officially walking in > June > > when he was about 3. He is able to walk on smooth surfaces but > not > > uneven ones (grass etc.). He isn't able to stand up without > grabbing > > onto something but we are working on it. His receptive language > is > > great, we sometimes have to spell words like video and we still > think > > he gets it. He vocalizes alot now when you speak to him and > > occasionally we hear a real word come out. He definitely > says " yeah " > > for yes alot of the time, especially when we ask him whether he > wants > > to play on the computer! He still isn't able to point with just > one > > finger but now has started to pseudo point with his whole hand. > He > > waves hello and goodbye to people. He doesn't really enjoy > playing > > too much, just videos, thumbing through books and the computer. > His > > teacher thought that he doesn't like to play with toys because its > > almost like work for him, hard to manipulate things so he gets > > frustrated and we think she is right. He goes to fullday > preschool. > > The school is just phenomenal... it is mostly for kids with pdd or > > autism so Mattie is a little different for them. There are seven > > children, 4 aides (matthew has his own) and one teacher. They do > > modified discreet trial there and we really belief that is why we > are > > seeing so much progress with his receptive and expressive language > > (new babbling anyway). He gets OT, PT, Speech in school and then > > Speech once a week at home (to help us with his oral motor > problems, > > he can't sip from a straw and has a lot of problems with new foods > > but is an oral eater). We also just got his first augmentative > > device (cheaptalk). the school lent it to us and he uses pecs > cards > > to communicate sometimes. He also goes to hippotherapy once a > > week ... he is on the horse for an hour and we think this is also > > amazing therapy too. has a little sister Audrey who is > > typically developing. I honestly believe that 's babbling > > recently is also the result of him trying to model after his > sister > > who at 17 months is singing the alphabet song! We are so proud of > > him and her and although we were scared too about a second child, > we > > decided to take the risk and believe that Audrey his sister is his > > best therapy. > > > > I pray for all of you that are trying so hard to control the > > seizures, I can only imagine how difficult that must be. Didn't > mean > > to ramble alot... just wanted to share our story. Most of all > just > > want to remind everyone to stay positive as much as you can and > keep > > the faith, > > > > Sally Mom to who amazes me everyday with his smile and > > determination > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2002 Report Share Posted December 5, 2002 Cheri, I've probably asked you this before, but given my shoddy memory (see liss loop posting re. name confusion) I'll ask again. Where does get hippotherapy? And is her aquatherapy school based or at a center? I'm currently collecting information for after our transition out of EI services. I'd love to find a hippotherapy place closer than Woodinville, though of course Little Bits is the one everyone always raves about. We are currently doing pool therapy at the Bellevue Aquatic Center-- loves it, but my only complaint is that the water is so chlorinated that it rots his wetsuit and leaves his skin raw. Thank you so much for sharing 's accomplishments--they give us all some hope that our children can progress--maybe not in the same ways or to that extent, but that they will learn skills from all this therapy that we are investing in. , mom of boys, in Bellevue, WA Quote Link to comment Share on other sites More sharing options...
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