Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Eva has been signing more too, she does daddy and now she does fine...lol. She love to have her hand open and i think its so funny how much she loves those hands!! LOL! Crystal and Eva (9 month charger) Eva had her 9 month checkup today and she is 14lbs 13oz, 25 and a half > inches long. We have an awsome peds doctor and I would tell all my > friends to go to him. As soon as he gets into the room he knows > everything going on with Eva. He was the same way with my 2 year old. > She of course is a peanut but most of our little chargers are but he > said as long as she keeps growing thats all that matter. She also got > her 9 month shot, she is so good she crys for a minute and then she is > fine. I couldnt ask for a better baby she is so sweet and so good! She > is also getting so much stronger, just over the last 3 weeks she is > holder her head up more on her tummy and tolerating it more. Her new > Bumbo chair is helping her alot, I love that thing!! > > Hugs, > Crystal and Eva (9 month charger) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Crystal and Eva I am so thrilled for you all, she is making fab progress, but if I am honest I feel a tad Jealous, Amelie hasnt even begun to do any communication sign or anything we never seem to get to this stage, so no one in the faimily has beeen shown what to do yet, also she only weighs 14lb 8 oz and she is 1. its rather worrying, i hope she catches Eva up soon. Pleased for you both seriously keep enjoying her, love Lesley xxx > > Eva has been signing more too, she does daddy and now she does > fine...lol. She love to have her hand open and i think its so funny > how much she loves those hands!! LOL! > > Crystal and Eva (9 month charger) > > Eva had her 9 month checkup today and she is 14lbs 13oz, 25 and a > half > > inches long. We have an awsome peds doctor and I would tell all my > > friends to go to him. As soon as he gets into the room he knows > > everything going on with Eva. He was the same way with my 2 year > old. > > She of course is a peanut but most of our little chargers are but > he > > said as long as she keeps growing thats all that matter. She also > got > > her 9 month shot, she is so good she crys for a minute and then > she is > > fine. I couldnt ask for a better baby she is so sweet and so good! > She > > is also getting so much stronger, just over the last 3 weeks she > is > > holder her head up more on her tummy and tolerating it more. Her > new > > Bumbo chair is helping her alot, I love that thing!! > > > > Hugs, > > Crystal and Eva (9 month charger) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 she only weighs 14lb 8 oz and she is 1. , Dont't worry, only weighed 14 lbs. when she turned one and we thought that she was doing really good! So don't worry too much, Amelie has been through alot. When this medical crisis is over she will improve. also has had alot of sickness and episodes with pain and she is just now starting a couple of signs with us and she is 3yrs. old so please don't feel too bad Amelie will catch up. But I do know how you feel. n--mom to 3yrs.-CHARGE and her 3 siblings and wife to Lester Note: forwarded message attached. --------------------------------- Yahoo! Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 n thanks I feel reassured Amelie like will catch up, you just read about children like Eva and then I had a mini panic, Amelie isnt probably aware she is not signing yet, and the only signs i can manage at the moment are to rude to post, they are aimed at the NHS!!!! Cheers for the positive Lesleyx > > she > only weighs 14lb 8 oz and she is 1. > > , > > Dont't worry, only weighed 14 lbs. when she turned one and we thought that she was doing really good! So don't worry too much, Amelie has been through alot. When this medical crisis is over she will improve. also has had alot of sickness and episodes with pain and she is just now starting a couple of signs with us and she is 3yrs. old so please don't feel too bad Amelie will catch up. But I do know how you feel. > > n--mom to 3yrs.-CHARGE and her 3 siblings and wife to Lester > > > Note: forwarded message attached. > > > --------------------------------- > Yahoo! Photos – Showcase holiday pictures in hardcover > Photo Books. You design it and we'll bind it! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2006 Report Share Posted January 14, 2006 Lesley, I know how you feel, I get jealous all the time when I see a normal baby. My best friend and I we pregnant together and to see her son walking already makes me so upset. But then I have to remember she is here for a reason and she is here period and thats all that matters. As for the signing she is just coping what we do and not really knowing what she is saying she just loves her hands...lol. Good luck and stay strong!! Crystal and Eva (9 month charger) > > > > Eva has been signing more too, she does daddy and now she does > > fine...lol. She love to have her hand open and i think its so > funny > > how much she loves those hands!! LOL! > > > > Crystal and Eva (9 month charger) > > > > Eva had her 9 month checkup today and she is 14lbs 13oz, 25 and a > > half > > > inches long. We have an awsome peds doctor and I would tell all > my > > > friends to go to him. As soon as he gets into the room he knows > > > everything going on with Eva. He was the same way with my 2 year > > old. > > > She of course is a peanut but most of our little chargers are > but > > he > > > said as long as she keeps growing thats all that matter. She > also > > got > > > her 9 month shot, she is so good she crys for a minute and then > > she is > > > fine. I couldnt ask for a better baby she is so sweet and so > good! > > She > > > is also getting so much stronger, just over the last 3 weeks she > > is > > > holder her head up more on her tummy and tolerating it more. Her > > new > > > Bumbo chair is helping her alot, I love that thing!! > > > > > > Hugs, > > > Crystal and Eva (9 month charger) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 lol give her a hug for me > > And that is a good thing. Kim > > > > > > she just loves her hands > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or > email info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Lesley- I know you wish you had communication going and that Amelie was bigger, etc. But it will all come in due time. Even if you were signing to her, she has so much for her little body to deal with, that she couldn't give it attention right now anyway. If you knew sign and could be doing it, sure, that'd be great. But the fact that you don't isn't something to feel too regretful about. You'll get there when you can. And 14+lbs really isn't too bad for CHARGE. I think Aubrie may have been around there at age 1. I'd have too look, but I know she was tiny for ages. Still looks much less than her 8 years. I find the silver lining to be that because she looks younger, she can either act younger and be seen as fine or act her age and be seen as advanced. Either way, it works for her. Throw those regrets and " if only " 's out the window. Michele W Aubrie's mom 8 yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 thanks Michele, I have been worried about the whole communication aspect, also I dont feel there are any hours left after the children and college, to learn any new skills just yet, but today she was such a giddy kipper, wriggle bottom, I think she is in a way communicating with me, and she keeps pulling her tongue out and smacking her lips, she has started to reach out to feel my face, she would never ever try and touch us before she always pulled her hand away from us, this is heart walming and the best ever for me anyway, its great really great because before all this last episode she wasnt doing these things so even despite what she has been through she has some how learned new tricks in such a short week. I know my time will come, its the infamous patience thing which I am short on , but trying to acquire. love Lesley > > Lesley- > I know you wish you had communication going and that Amelie was bigger, etc. > But it will all come in due time. Even if you were signing to her, she has > so much for her little body to deal with, that she couldn't give it > attention right now anyway. If you knew sign and could be doing it, sure, > that'd be great. But the fact that you don't isn't something to feel too > regretful about. You'll get there when you can. And 14+lbs really isn't > too bad for CHARGE. I think Aubrie may have been around there at age 1. > I'd have too look, but I know she was tiny for ages. Still looks much less > than her 8 years. I find the silver lining to be that because she looks > younger, she can either act younger and be seen as fine or act her age and > be seen as advanced. Either way, it works for her. > > Throw those regrets and " if only " 's out the window. > > Michele W > Aubrie's mom 8 yrs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Lesley, I must reassure you that you are communicating with Amelie all the time and she is communicating with you; she just doesn't have formal words or signs yet, but that is truly okay. I used to panic that Dylan had to have exposure to sign language immediately, I could not bear that he and I not be able to communicate. But then I realized communication is so much more than words. Words are the top of the pyramid. There are layers and layers of communication before that. Responding to her cues, her anticipating what is going to happen based on yours, getting used to touch and getting used to her hand on yours or your hand in hers; there are so many things that happen all the time. Building relationship, are all laying the foundation for words later. She will get there and so will you. I started learning sign language when Dylan was an infant. Because he was not ready for it visually until much later, we got NOOOOOO feedback from him when signing, which makes it very hard to keep up with. Now that sign means something to him, it is easy to fit it into our day. You will know when the time is right for Amelie and you to learn something new. And it is not like she will need to know everything all at once. You will have plenty of time to learn together. (Toddlers don't talk in paragraphs, they talk in one and two word sentences.) Kim > > > > thanks Michele, > > I have been worried about the whole communication aspect, also I > dont feel there are any hours left after the children and college, > to learn any new skills just yet, but today she was such a giddy > kipper, wriggle bottom, I think she is in a way communicating with > me, and she keeps pulling her tongue out and smacking her lips, she > has started to reach out to feel my face, she would never ever try > and touch us before she always pulled her hand away from us, > this is heart walming and the best ever for me anyway, its great > really great because before all this last episode she wasnt doing > these things so even despite what she has been through she has some > how learned new tricks in such a short week. > > I know my time will come, its the infamous patience thing which I am > short on , but trying to acquire. > > love Lesley > > >> >> Lesley- >> I know you wish you had communication going and that Amelie was > bigger, etc. >> But it will all come in due time. Even if you were signing to > her, she has >> so much for her little body to deal with, that she couldn't give it >> attention right now anyway. If you knew sign and could be doing > it, sure, >> that'd be great. But the fact that you don't isn't something to > feel too >> regretful about. You'll get there when you can. And 14+lbs > really isn't >> too bad for CHARGE. I think Aubrie may have been around there at > age 1. >> I'd have too look, but I know she was tiny for ages. Still looks > much less >> than her 8 years. I find the silver lining to be that because she > looks >> younger, she can either act younger and be seen as fine or act her > age and >> be seen as advanced. Either way, it works for her. >> >> Throw those regrets and " if only " 's out the window. >> >> Michele W >> Aubrie's mom 8 yrs >> > > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca or email > info@... . > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2006 Report Share Posted January 15, 2006 Kim & Lesley- This is perfect -- " ...communication is so much more than words. Words are the top of the pyramid. There are layers and layers of communication before that. Responding to her cues, her anticipating what is going to happen based on yours, getting used to touch and getting used to her hand on yours or your hand in hers; there are so many things that happen all the time. Building relationship, are all laying the foundation for words later. " So, Lesley, focus on those beginning things and you will feel like you are doing something and making progress. She will now reach out and touch you. Encourage that. Place your hand on hers often so that she is prepped for hand-over-hand instruction someday. Play little games that require turn taking with your hands -- I'll touch you, now you touch me -- peek a boo -- etc. Follow her lead always but think about all the layers you are building with each interaction. You will feel more powerful and will begin to marvel at all she does know and can do. Michele W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Lesley, I know the feeling of them touching your face it just melts your heart. When we get close to Eva she touches our face too and I think its so great. Your little angel has gone threw alot and in time she will learn things too. Eva has not been back in the hospital in awhile and so we have had a theropist coming to the house every week teaching me sign and working with Evas hearing. I dont know what choses you have where you are and how what or who can help you when she is back home but I hope you find something that can help you all. Big Hugs, Crystal and Eva (9 month charger) > > > > Lesley- > > I know you wish you had communication going and that Amelie was > bigger, etc. > > But it will all come in due time. Even if you were signing to > her, she has > > so much for her little body to deal with, that she couldn't give it > > attention right now anyway. If you knew sign and could be doing > it, sure, > > that'd be great. But the fact that you don't isn't something to > feel too > > regretful about. You'll get there when you can. And 14+lbs > really isn't > > too bad for CHARGE. I think Aubrie may have been around there at > age 1. > > I'd have too look, but I know she was tiny for ages. Still looks > much less > > than her 8 years. I find the silver lining to be that because she > looks > > younger, she can either act younger and be seen as fine or act her > age and > > be seen as advanced. Either way, it works for her. > > > > Throw those regrets and " if only " 's out the window. > > > > Michele W > > Aubrie's mom 8 yrs > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 Ellen, I have just had lots of different experiences in my life instead of working or learning about only one thing - they do all seem to come together though guiding me to the next step. (Know a little about a lot instead of a lot about a little - scary isn't it.) Kim > KIm as allways you kake me smile yet again i just love your coments are you > sure you werent a doctor in your previous life LOL well lesly kims right > bout the spoken word quite a few of my friends dont talk and dont really > sign or if they do i dotn understand it lol but they can hear so that means > that i canjust tell them anything and when they respond its in a language i > can understand smiles and all and laughs tell me stuff from them its wierd > but true and they allwasy tell me they love me ad sure amelie is telling you > that to hugs Ellen in aus where its cloudy and rainy and i did swim then > walked home in the rain yesterday lol > > >> >> Lesley, >> >> I know the feeling of them touching your face it just melts your >> heart. When we get close to Eva she touches our face too and I think >> its so great. Your little angel has gone threw alot and in time she >> will learn things too. Eva has not been back in the hospital in >> awhile and so we have had a theropist coming to the house every week >> teaching me sign and working with Evas hearing. I dont know what >> choses you have where you are and how what or who can help you when >> she is back home but I hope you find something that can help you >> all. >> >> Big Hugs, >> Crystal and Eva (9 month charger) >> >> >>>> >>>> Lesley- >>>> I know you wish you had communication going and that Amelie was >>> bigger, etc. >>>> But it will all come in due time. Even if you were signing to >>> her, she has >>>> so much for her little body to deal with, that she couldn't give >> it >>>> attention right now anyway. If you knew sign and could be doing >>> it, sure, >>>> that'd be great. But the fact that you don't isn't something to >>> feel too >>>> regretful about. You'll get there when you can. And 14+lbs >>> really isn't >>>> too bad for CHARGE. I think Aubrie may have been around there >> at >>> age 1. >>>> I'd have too look, but I know she was tiny for ages. Still >> looks >>> much less >>>> than her 8 years. I find the silver lining to be that because >> she >>> looks >>>> younger, she can either act younger and be seen as fine or act >> her >>> age and >>>> be seen as advanced. Either way, it works for her. >>>> >>>> Throw those regrets and " if only " 's out the window. >>>> >>>> Michele W >>>> Aubrie's mom 8 yrs >>>> >>> >> >> >> >> >> >> >> Membership of this email support groups does not constitute membership in >> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter), >> please contact marion@... or visit >> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada >> information and membership, please visit http://www.chargesyndrome.ca or >> email info@... . >> 8th International >> CHARGE Syndrome Conference, July, 2007. Information will be available at >> www.chargesyndrome.org or by calling 1-. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2006 Report Share Posted January 16, 2006 yep lol > > Ellen, > > I have just had lots of different experiences in my life instead of > working > or learning about only one thing - they do all seem to come together > though > guiding me to the next step. (Know a little about a lot instead of a lot > about a little - scary isn't it.) > > Kim > > > > > > KIm as allways you kake me smile yet again i just love your coments are > you > > sure you werent a doctor in your previous life LOL well lesly kims right > > bout the spoken word quite a few of my friends dont talk and dont really > > sign or if they do i dotn understand it lol but they can hear so that > means > > that i canjust tell them anything and when they respond its in a > language i > > can understand smiles and all and laughs tell me stuff from them its > wierd > > but true and they allwasy tell me they love me ad sure amelie is telling > you > > that to hugs Ellen in aus where its cloudy and rainy and i did swim then > > walked home in the rain yesterday lol > > > > > >> > >> Lesley, > >> > >> I know the feeling of them touching your face it just melts your > >> heart. When we get close to Eva she touches our face too and I think > >> its so great. Your little angel has gone threw alot and in time she > >> will learn things too. Eva has not been back in the hospital in > >> awhile and so we have had a theropist coming to the house every week > >> teaching me sign and working with Evas hearing. I dont know what > >> choses you have where you are and how what or who can help you when > >> she is back home but I hope you find something that can help you > >> all. > >> > >> Big Hugs, > >> Crystal and Eva (9 month charger) > >> > >> > >>>> > >>>> Lesley- > >>>> I know you wish you had communication going and that Amelie was > >>> bigger, etc. > >>>> But it will all come in due time. Even if you were signing to > >>> her, she has > >>>> so much for her little body to deal with, that she couldn't give > >> it > >>>> attention right now anyway. If you knew sign and could be doing > >>> it, sure, > >>>> that'd be great. But the fact that you don't isn't something to > >>> feel too > >>>> regretful about. You'll get there when you can. And 14+lbs > >>> really isn't > >>>> too bad for CHARGE. I think Aubrie may have been around there > >> at > >>> age 1. > >>>> I'd have too look, but I know she was tiny for ages. Still > >> looks > >>> much less > >>>> than her 8 years. I find the silver lining to be that because > >> she > >>> looks > >>>> younger, she can either act younger and be seen as fine or act > >> her > >>> age and > >>>> be seen as advanced. Either way, it works for her. > >>>> > >>>> Throw those regrets and " if only " 's out the window. > >>>> > >>>> Michele W > >>>> Aubrie's mom 8 yrs > >>>> > >>> > >> > >> > >> > >> > >> > >> > >> Membership of this email support groups does not constitute membership > in > >> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > >> For information about the CHARGE Syndrome > >> Foundation or to become a member (and get the newsletter), > >> please contact marion@... or visit > >> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome > Canada > >> information and membership, please visit http://www.chargesyndrome.caor > >> email info@... . > >> 8th International > >> CHARGE Syndrome Conference, July, 2007. Information will be available > at > >> www.chargesyndrome.org or by calling 1-. > >> Quote Link to comment Share on other sites More sharing options...
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