Guest guest Posted November 6, 2001 Report Share Posted November 6, 2001 on 11/5/01 7:25 PM, Kristal at lostlamb_69@... wrote: > Hi, > > I know the group has talked about this before but I > need a refresher:) Caitlin is biting her hand really > bad lately. I am afraid she is going to leave > permanent marks! Any ideas what I should do? She bit > me so bad the other day I thought I was gonna die. I > guess I will learn not to put my fingers in her > mouth:) > > Caitlin is going into the hospital next week for a > MRI, Baer test, and eye test. I am scaried about the > anesthesia, she didn't respond well last time. But, > hopefully everything goes fine. > > > Kristal mom to > Beate, , Caitlin(CHARGE) and Ian > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2001 Report Share Posted November 6, 2001 Hi, sorry, I have no advise on the hand biting, except maybe to redirect. best of luck with the tests. maria, mom to timmy 6 ChARGE, keegan 3.5, liam 1, wife to pat (unknown) > Hi, > > I know the group has talked about this before but I > need a refresher:) Caitlin is biting her hand really > bad lately. I am afraid she is going to leave > permanent marks! Any ideas what I should do? She bit > me so bad the other day I thought I was gonna die. I > guess I will learn not to put my fingers in her > mouth:) > > Caitlin is going into the hospital next week for a > MRI, Baer test, and eye test. I am scaried about the > anesthesia, she didn't respond well last time. But, > hopefully everything goes fine. > > > Kristal mom to > Beate, , Caitlin(CHARGE) and Ian > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2001 Report Share Posted December 17, 2001 Hi-: The perfect gift is the thought that you gave to picking out that train and the love that you show in giving it to Emma. Dick Young, Grandfather to Ogan. (unknown) > I just caught up once again on numerous digests and felt I had to comment on > one thing I read. I, like the other comments I read, was crying when I read > about . I also read that letter at just the right time. Yesterday, > we celebrated my granddaughter Emma's 8th birthday. She became upset when > it was time to open her presents and she seemed to want to take me aside > (which she did), but was unable to communicate to me what she wanted to do. > She got very angry with me and started crying. I know she was just > frustrated at not being able to make herself understood, and that hurts me > so much because I know receptively she is getting so much more than she is > able to express. She is beginning to verbalize more, but usually at > prompting and not to be understood. She isn't signing very much either, > although she watches very intently, my mouth when I am speaking (she usually > attempts to form the words with her mouth)and my hands when I am signing > (unfortunately, I don't know a great many signs and I sometimes forget to > use sign). I know there is no easy answer to these problems and I truly > feel that Emma will be able to communicate reasonably well in the future > (don't ask why I believe that, its just a strong feeling I have), but in the > meantime, reading stories like that of s and also about Kendra and > her workbooks make me feel much better. > > As for buying Christmas presents for my grandchildren, it may be a little > harder but when you finally find something they like the satisfaction is > that much greater. This year I was having a really hard time thinking of > something to buy for Emma. So I took it to where I take most of my problems > and prayed for some guidance. Well for some reason I was in a store and saw > this toy train set with a hand held remote control to operate forward and > backward motion and some cars that have moving people. I don't know why, I > decided to by this train for Emma (Even though her father and grandfather > are avid model railroaders), but I somehow just thought she would get a kick > out of having a set of her own. I hope the choice was inspired but even if > it's not the perfect gift, I'll have next year to try again and I think Emma > will like it just knowing it comes from me (I hope) > > > > > Grandmother of Emma(8) and Diane(6) > Long Island, NY > > > > > > Grandmother of Emma(almost 8) and Diane(6) > Long Island, NY > > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2002 Report Share Posted January 5, 2002 you need to TELL THE DOCTORS she has feeding issues if they don't listen to you GET ANOTHER DOCTOR involved I just went there this for the last couple weeks one doc says its ok he has only gained 2 ounces in a month never mind he has grown 3/4 of an inch NO ITS NOT OK YOU CAN COUNT ALL HIS RIBS now that I got their attention they increased his feeds and are talking about adding baby food (by the way Billie is just three months ) another thing he already has 2 speech therapist (to help him learn to eat and talk when the time comes cause he has trach) so yes she defiantly needs a speech therapist and the doctor to check for growth hormones is an endocrinology (don't think I spelled that right) she should be checked for that as well the eye doctor thing I don't think I can help you with thats the one I am fighting with wont tell me why they need to see him every three weeks cause if it is just to tell me over and over that he has defective retinas they can forget it if anyone here can think of a good reason for this let me know thanks... WOW I CAN NOT BELIEVE HOW MUCH I HAVE LEARNED IN THREE MONTHES HEHE!!!!!!!! http://community.webtv.net/maryechick12/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2002 Report Share Posted January 18, 2002 Cathrine, sorry to get back to you so late have had alot of stuff to do and have not had time to check my email like I would like to. A telectomy is where they take the telious bone out of both of your feet, this is the bone that is above the ankle, they did this because the regular club foot surgery has not done any good at all due to his othogriposis joint disease( it is some what like authritis but does not have the pain with it) The telious bone is the bone that conects the leg to the foot, they removed it and pinned it in hopes it will stay in a nutural position, I hope it works but will accept if it does not and we do not want to put david through any more surgeries that is not needed due to him taking longer and longer to recover form each new surgery he has. I am doing ok thank you it is a bit stressful due to david not being able to talk and tell us what is going on with him besides the pain in his feet. Things will be fine I am sure of that. Thank you so much for your concern and prayers are always welcome. Thanks again. mom to 7years and wife to . (unknown) , Excuse my ignorance but what exactly is a telectomy. I know how hard it is to watch children recover from surgery. My granddaughter Emma was also in a cast from her waist down both her legs to her ankles, so how you are feeling. How long will he be in the cast? I will pray that the surgery was successful. Grandmother of Emma(8) and Diane(6) Long Island, NY _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 , Welcome to CHARGE land and congrats on the new baby-to-be... As for information regarding abnormalities in the 2nd child, with regards to CHARGE there is a section in the CHARGE Syndrome manual about the recurrence risks. I'm not sure where you would look to find out about non-CHARGE abnormalities in a 2nd pregnancy. Perhaps if Meg Hefner (our resident geneticist guru) is reading this she might have some ideas of where you can look for that type of information. The CHARGE Manual is available from the CHARGE Foundation (www.chargesyndrome.org) for a cost of 20 dollars US (and worth every penny!) Hope this helps, and I hope to hear more from you & more about your daughter when you get a chance! Weir Mom to Kennedy 4yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " In three words I can sum up everything I've learned about life: it goes on. " - Frost (unknown) Dear All, I am new to this list. We have one seven year old girl with CHARGE syndrome and now we are pregnant again. Does anyone know where I can get information on the chances of our second child being born with abnormaities? I'm already aware that the chances of a second child with CHARGE is very low (1%-2%). But we are wondering about an increased chance for any other abnormaities. Thank you, _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2002 Report Share Posted February 5, 2002 , We have 3 healthy daughters after having a child with CHARGE. (unknown) > Dear All, > > I am new to this list. We have one seven year old girl with CHARGE syndrome > and now we are pregnant again. Does anyone know where I can get information > on the chances of our second child being born with abnormaities? I'm > already aware that the chances of a second child with CHARGE is very low > (1%-2%). But we are wondering about an increased chance for any other > abnormaities. > > Thank you, > > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 6th International CHARGE Syndrome Conference, Cleveland, Ohio, > July 25-27, 2003. Information will be available at our website > www.chargesyndrome.org or by calling 1-. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 angi , how did you gett started on ebay outgrown clothes. Is this something you do from home or office? Shauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 tiffany, I sell on ebay kids outgrown clothes... etc! angi --- caez wrote: > I've been reading your emails out different ways of > funding your tubal > reversal besides accepting bank loans. I will try > just about anythig to > fund my TR. So all suggesstions are welcome. > > Tiphannie100@... > Tiphannie100@... > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print > your photos: > http://photos.msn.com/support/worldwide.aspx > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 I do it from home! I use a digital camera take a photo and I have an account on ebay hit sell and follow the promps! It's ..30 per auction and a % of whyat sells. i start all at 50 centws or $1.00 and let the bidding go! Somethings go high some don't sell but I've earned a few hundred in the last year! Angi --- sjust4today2000@... wrote: > angi , > how did you gett started on ebay outgrown clothes. > Is this something you do > from home or office? > Shauna > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 I do it from home! I use a digital camera take a photo and I have an account on ebay hit sell and follow the promps! It's ..30 per auction and a % of whyat sells. i start all at 50 centws or $1.00 and let the bidding go! Somethings go high some don't sell but I've earned a few hundred in the last year! Angi --- sjust4today2000@... wrote: > angi , > how did you gett started on ebay outgrown clothes. > Is this something you do > from home or office? > Shauna > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2002 Report Share Posted June 26, 2002 I got them, they are so precious and looked great for all she's been through! Thanks Terrie! G. TL: May 16, 1995 TR: June 10, 2002 with Dr. Levin 7.5 cm - left 6.5 cm - right (unknown) I forwarded some of the pic's of 's Bean to some of you here. I didn't forward all of them because there wer so many, only the best! Love and Hugz- Terrie in Texas __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2002 Report Share Posted June 28, 2002 Lindsey, How old was your daughter when she passed away? My son passed away in 1999 he was 7 weeks old and a twin. Kia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2008 Report Share Posted May 18, 2008 It is her shame, not yours. > > wow, i too had shower issues with my bpd mom. i'm still learning, > appearance abuse. thanks for the new perspective on an old shame today :-) > > Quote Link to comment Share on other sites More sharing options...
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