Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 , Kennedy spoon feeds and is trying to chew and moves her tongue around to get the food in the right place. she has said " da da " and " hi " but nothing consistant yet. She is very vocal and loves to put everything in her mouth and has for a long time. She is sitting up for a few seconds at a time, can do 20 mins in her stander and is takes steps with the pt. Your not alone, I too have said why Kennedy, she is such a good girl and works very hard why should she have to go through this. On more than one occasion I have told my husband, I can't handle this, I'm not strong enough to do this anymore. But I still get up every morning and do whatever I have to to make sure my little girl has the best quality of life possible, after all that's all any of us can do. and Kennedy(2yrs., pmg and hemi-hypertraphy) >From: sivillo@... >Reply-To: polymicrogyria >To: polymicrogyria >Subject: Questions >Date: Mon, 27 Aug 2001 14:51:20 -0000 > >Hi all, >I don't write much, but I read everything (although often weeks >late). And I apologize if you read this same post on other lists, >I'm sending it to a few. Basically I have two questions: > >1. Many of you say your children are non-verbal or have speech >delays or speech disorders. Is it just speech? or oral motor - i.e. >drooling, poor tongue movement, swallowing difficulties, inability to >blow or suck through a straw, etc.? And are there any words, or just >grunts. Any attempts at words? > >2. I've also read a lot about learning delays. Does anyone else >have a child who measures almost " normal " IQ (high 80's) but does not >understand most of what is said to him? He understands the signs >he's learned, and he recognizes many words (so our hope is that he'll >be able to learn to read) but if someone asks him his name, or how >old he is, he doesn't understand. Simple request like, close the >door, results in a blank stare. > >Just a little background, Jimmy is 8 years old, showed developmental >delays early. Had a febrile seizure at 18 months. First GM at 4 >years old, then two more six months later, then more and more. Has >had GM, complex partial, simple partial, absence, and drops (I'm >convinced caused by Lamictal). He's been on Dilantin, Depakote, >Lamictal, ACTH, Prednisone, in different combos. Currently on >Depakote, Felbamate combo, and has been seizure-free for 2 >months!!! :-) His record over the past four years is three months, >so we're keeping our fingers crossed. He's been variously diagnosed >over the years with Lennox-Gastaut, ESES/CSWS, generalized seizure >disorder, polymicrogyria - depends on which doctor I speak to. >Physically, he's delayed but is able to walk, play, use the bathroom, >climb, throw a ball, even ride a bike with training wheels. The >hardest area is is lack of language - receptive and expressive. And >he's a sweet, handsome, loveable boy who I couldn't love more!!!!! > >One more thing - I often read things about how God only gives these >special kids to parents who are special, and never gives us more than >we can handle. Personally (and no offense to anyone who really >believes this) I am not special, don't want to be special, and very >often, when Jimmy's doing poorly, I CAN'T handle it!!! I'm much more >inclined to whine " Oh, why does it have to be this wonderful >boy?!?!? " than to say what a great learning opportunity this has >been. --- Sorry, this has been bothering me for a long time. > >Wishing for better days for all our kids.... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 , Kennedy spoon feeds and is trying to chew and moves her tongue around to get the food in the right place. she has said " da da " and " hi " but nothing consistant yet. She is very vocal and loves to put everything in her mouth and has for a long time. She is sitting up for a few seconds at a time, can do 20 mins in her stander and is takes steps with the pt. Your not alone, I too have said why Kennedy, she is such a good girl and works very hard why should she have to go through this. On more than one occasion I have told my husband, I can't handle this, I'm not strong enough to do this anymore. But I still get up every morning and do whatever I have to to make sure my little girl has the best quality of life possible, after all that's all any of us can do. and Kennedy(2yrs., pmg and hemi-hypertraphy) >From: sivillo@... >Reply-To: polymicrogyria >To: polymicrogyria >Subject: Questions >Date: Mon, 27 Aug 2001 14:51:20 -0000 > >Hi all, >I don't write much, but I read everything (although often weeks >late). And I apologize if you read this same post on other lists, >I'm sending it to a few. Basically I have two questions: > >1. Many of you say your children are non-verbal or have speech >delays or speech disorders. Is it just speech? or oral motor - i.e. >drooling, poor tongue movement, swallowing difficulties, inability to >blow or suck through a straw, etc.? And are there any words, or just >grunts. Any attempts at words? > >2. I've also read a lot about learning delays. Does anyone else >have a child who measures almost " normal " IQ (high 80's) but does not >understand most of what is said to him? He understands the signs >he's learned, and he recognizes many words (so our hope is that he'll >be able to learn to read) but if someone asks him his name, or how >old he is, he doesn't understand. Simple request like, close the >door, results in a blank stare. > >Just a little background, Jimmy is 8 years old, showed developmental >delays early. Had a febrile seizure at 18 months. First GM at 4 >years old, then two more six months later, then more and more. Has >had GM, complex partial, simple partial, absence, and drops (I'm >convinced caused by Lamictal). He's been on Dilantin, Depakote, >Lamictal, ACTH, Prednisone, in different combos. Currently on >Depakote, Felbamate combo, and has been seizure-free for 2 >months!!! :-) His record over the past four years is three months, >so we're keeping our fingers crossed. He's been variously diagnosed >over the years with Lennox-Gastaut, ESES/CSWS, generalized seizure >disorder, polymicrogyria - depends on which doctor I speak to. >Physically, he's delayed but is able to walk, play, use the bathroom, >climb, throw a ball, even ride a bike with training wheels. The >hardest area is is lack of language - receptive and expressive. And >he's a sweet, handsome, loveable boy who I couldn't love more!!!!! > >One more thing - I often read things about how God only gives these >special kids to parents who are special, and never gives us more than >we can handle. Personally (and no offense to anyone who really >believes this) I am not special, don't want to be special, and very >often, when Jimmy's doing poorly, I CAN'T handle it!!! I'm much more >inclined to whine " Oh, why does it have to be this wonderful >boy?!?!? " than to say what a great learning opportunity this has >been. --- Sorry, this has been bothering me for a long time. > >Wishing for better days for all our kids.... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 , Kennedy spoon feeds and is trying to chew and moves her tongue around to get the food in the right place. she has said " da da " and " hi " but nothing consistant yet. She is very vocal and loves to put everything in her mouth and has for a long time. She is sitting up for a few seconds at a time, can do 20 mins in her stander and is takes steps with the pt. Your not alone, I too have said why Kennedy, she is such a good girl and works very hard why should she have to go through this. On more than one occasion I have told my husband, I can't handle this, I'm not strong enough to do this anymore. But I still get up every morning and do whatever I have to to make sure my little girl has the best quality of life possible, after all that's all any of us can do. and Kennedy(2yrs., pmg and hemi-hypertraphy) >From: sivillo@... >Reply-To: polymicrogyria >To: polymicrogyria >Subject: Questions >Date: Mon, 27 Aug 2001 14:51:20 -0000 > >Hi all, >I don't write much, but I read everything (although often weeks >late). And I apologize if you read this same post on other lists, >I'm sending it to a few. Basically I have two questions: > >1. Many of you say your children are non-verbal or have speech >delays or speech disorders. Is it just speech? or oral motor - i.e. >drooling, poor tongue movement, swallowing difficulties, inability to >blow or suck through a straw, etc.? And are there any words, or just >grunts. Any attempts at words? > >2. I've also read a lot about learning delays. Does anyone else >have a child who measures almost " normal " IQ (high 80's) but does not >understand most of what is said to him? He understands the signs >he's learned, and he recognizes many words (so our hope is that he'll >be able to learn to read) but if someone asks him his name, or how >old he is, he doesn't understand. Simple request like, close the >door, results in a blank stare. > >Just a little background, Jimmy is 8 years old, showed developmental >delays early. Had a febrile seizure at 18 months. First GM at 4 >years old, then two more six months later, then more and more. Has >had GM, complex partial, simple partial, absence, and drops (I'm >convinced caused by Lamictal). He's been on Dilantin, Depakote, >Lamictal, ACTH, Prednisone, in different combos. Currently on >Depakote, Felbamate combo, and has been seizure-free for 2 >months!!! :-) His record over the past four years is three months, >so we're keeping our fingers crossed. He's been variously diagnosed >over the years with Lennox-Gastaut, ESES/CSWS, generalized seizure >disorder, polymicrogyria - depends on which doctor I speak to. >Physically, he's delayed but is able to walk, play, use the bathroom, >climb, throw a ball, even ride a bike with training wheels. The >hardest area is is lack of language - receptive and expressive. And >he's a sweet, handsome, loveable boy who I couldn't love more!!!!! > >One more thing - I often read things about how God only gives these >special kids to parents who are special, and never gives us more than >we can handle. Personally (and no offense to anyone who really >believes this) I am not special, don't want to be special, and very >often, when Jimmy's doing poorly, I CAN'T handle it!!! I'm much more >inclined to whine " Oh, why does it have to be this wonderful >boy?!?!? " than to say what a great learning opportunity this has >been. --- Sorry, this has been bothering me for a long time. > >Wishing for better days for all our kids.... > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Thank you . This is so true. It really does help to know that this is normal for this disease. Dad is so much worse today. We're looking for a skilled nursing facility. A nurse is on her way over right now. It is time for a feeding tube. We spent the day at the E.R. yesterday to rule out pneumonia and a couple of other things. They sent him home with a catheter, but we didn't receive any instructions. Wow. Tough. Love, From: cindy.vechinski@... Reply-To: LBDcaregivers Date: Thu, 12 Sep 2002 13:20:12 -0500 To: LBDcaregivers Subject: RE: LBD/atypical Parkinsins/broken arm Welcome . I am happy you found this site too. There is a lot of knowledge, support, ideas, hope, and friendship here! Sometimes it is just nice to know you are not alone and the things that your loved one does is not " strange " or " out of the ordinary " , but rather normal for the course of this dreaded disease. I am sorry to hear about your Dad. Perhaps some of the medications out there can help " rev " him up a bit. Is he currently taking any meds for this? I hope his arm heels fast. I wish you the best of luck with things and will keep you and your family in my prayers. Take care, Re: LBD/atypical Parkinsins/broken arm Hello! I am so happy to have found this email list. I wish I had searched for it before, but I wasn't aware that my Dad had this form of dementia until recently. We knew he had dementia, and that it was progressing, but did not have enough info about the LBD. I just purchased a laptop so that I can log on from Mom and Pop's house. I'm there every day now. I have been reading your posts with great interest. It has been a comfort. This list would have helped us so much in the earlier days when we were so completely baffled by his dementia. The ups and downs were a true emotional roller coaster ride. We would have coped better had we known more about this disease. Poor mom would get so hopeful every time he seemed to rally. Until very recently, she never lost hope that he'd get better somehow -- a cure, a miracle... anything! He has suffered from atypical Parkinsons since his late 50's. He is 67 now, and he has now reached the point where he is bedridden. We are caring for him at home. His verbal abilities are almost nil now. Now we're trying to move him around to prevent pneumonia. He cannot move at all now. The latest extreme decline came after he got out of bed by himself, fell, and broke his arm quite badly. The dementia spiraled out of control after that incident. Now he has pain to deal with! I spoke with his orthopedic surgeon yesterday. It's a bad break which normally requires surgery so that the patient can regain function. Well, he has no function anyway and the surgery would be so risky. Additionally, the pain would be worse for quite some time. So, we're going to manage let it keep healing, manage the pain, and keep him as comfortable as possible. I'm so glad to have found you! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2002 Report Share Posted September 17, 2002 Wow , you really are going through a tough time right now. How awful the hospital didn't spend some time talking with you and the family about the prognosis as well as immediate care plans. I hope you feel comfortable calling the doctor and speaking to him so you can obtain an in-depth report. Keep us posted. Extra prayers going your way. Take care, Re: LBD/atypical Parkinsins/broken arm Hello! I am so happy to have found this email list. I wish I had searched for it before, but I wasn't aware that my Dad had this form of dementia until recently. We knew he had dementia, and that it was progressing, but did not have enough info about the LBD. I just purchased a laptop so that I can log on from Mom and Pop's house. I'm there every day now. I have been reading your posts with great interest. It has been a comfort. This list would have helped us so much in the earlier days when we were so completely baffled by his dementia. The ups and downs were a true emotional roller coaster ride. We would have coped better had we known more about this disease. Poor mom would get so hopeful every time he seemed to rally. Until very recently, she never lost hope that he'd get better somehow -- a cure, a miracle... anything! He has suffered from atypical Parkinsons since his late 50's. He is 67 now, and he has now reached the point where he is bedridden. We are caring for him at home. His verbal abilities are almost nil now. Now we're trying to move him around to prevent pneumonia. He cannot move at all now. The latest extreme decline came after he got out of bed by himself, fell, and broke his arm quite badly. The dementia spiraled out of control after that incident. Now he has pain to deal with! I spoke with his orthopedic surgeon yesterday. It's a bad break which normally requires surgery so that the patient can regain function. Well, he has no function anyway and the surgery would be so risky. Additionally, the pain would be worse for quite some time. So, we're going to manage let it keep healing, manage the pain, and keep him as comfortable as possible. I'm so glad to have found you! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 I have wondered where you have been. I received a wonderful email from , and from the HUGE ship. She sent along beautiful pictures...love them!! You have been in my thoughts and prayers. Still looking forward to seeing you in person. I will try to find some pictures to send yet I am usually the one behind the camera. :-)) Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Amazing ship isn't it? She does get the coolest pictures! Did she send you the one if her on the ship with her hair whipping accross her face from a nearby chopper? Looked funny! I guess today is the Navy's 227th birthday! I have been around, but I wasn't seeing much email activity, and so I got a little curious and checked the yahoo site and sure enough found out I was having email troubles! How have you been? Glad to hear from you too! Still also looking forward to next month! Take care, > > I have wondered where you have been. I received a wonderful email from > , and from the HUGE ship. She sent along beautiful > pictures...love them!! You have been in my thoughts and prayers. Still > looking forward to seeing you in person. I will try to find some > pictures to send yet I am usually the one behind the camera. :-)) > Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Yes, did send the picture of her hair flipping around...said something like she needed more hair gel. Also, saw the pictures of the dolphins swimming alongside the ship. What wonderful memories she is making. I have been fine. Went shopping for a Memorial Candle/Remembrance Light. It has a stake that goes into the ground, with a candle encased in a blue plastic holder, covered by a dome like top and a cross on the top. Since my mom and dad will have separate headstones, I wanted something to put in the middle to bring them together...and these candles burn for 6 days. At UPS, where I work, my co-workers took up a collection and told me to use the money for something useful and to be remembered by. I think the candle is the perfect gift. Anyway, time to go on to the next emails. So glad you are back in the group...completely again. By the way, how is your MIL doing? Haven't heard much about here lately, which I am hoping no news is good news. Still praying for her and your family. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 So sorry I haven't heard anything on the upcoming LBD seminar in Minneapolis. I did call the administrator of the long term care facility, again, and she called back saying she is checking with everyone trying to find out the info. Apparently she had heard from a family about the seminar so she is doing all she can to find out what she can. Just wanted to update you...sorry I didn't have any info for you yet. How is your MIL doing these days. I hope that no news is good news. She and your family remains in my prayers!! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 No problem! When you do hear something, just let me know. Since having to change my email set up, it is not as easy to check my email this way, so I am pretty behind on posts. Sorry to all! Thanks for asking about my MIL. She really is doing well. I just had her at the salon and she got the royal treatment - color, cut, eyebrow wax, manicure, and pedicure. My FIL didn't even bat an eye when the bill came to $130.00!! She deserves it. She has been through so much. I hope you are doing well and sleeping at night. I hope you keep us updated to on your Uncle too. You will all be in our prayers. Take care Sandie! > > So sorry I haven't heard anything on the upcoming LBD seminar in > Minneapolis. I did call the administrator of the long term care > facility, again, and she called back saying she is checking with > everyone trying to find out the info. Apparently she had heard from a > family about the seminar so she is doing all she can to find out what > she can. Just wanted to update you...sorry I didn't have any info for > you yet. > > How is your MIL doing these days. I hope that no news is good news. > She and your family remains in my prayers!! > > Sandie > Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Thanks for the message and the quick chat. All is well with the fill, too good I think LMAO! I think I will be heading back next week for a smidgen more. Little by Little is probably good, but it is a slow old business to be honest... and $7 to park everytime is a bit of a pest. Parking there is awful. Today I was on the roof at the end... miles away and as usual I was running behind, so all a bit of a pest. Never mind. See you tomorrow night, so much for me worrying about whether or not I could eat duck... Methinks it will be going down a big treat - worst luck! Mel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2006 Report Share Posted August 4, 2006 Okay , it was weather I would allow for a forfeit with, so you are off the hook this time. Nx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 Thanks , I have since discovered their website and I am reading thru some of their past episodes too. It's actually a very interesting show. Thanks again! Nx Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.