Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 Deepta, We all understand what you are going through...feel free to vent. We are doing the same things with . We have gone from the refusal you talk about to actually chewing and swallowing some things. And each day is different. What she eats today may be refused tomorrow. My family lives 4 hours away so they do not know the struggles that we face daily. They see us for a couple of days at a time and never when she is sick, so they have no clue. They have never been there for a surgery or anything. They only hear the progress and don't really realize how hard we have to work for a tiny bit of reward... Crying helps some days. Other days we just do it...but we on the list are always here for each other because we have all faced some of the same issues to varying degrees. Perhaps there is someone who could try to feed her for a day. Or else just give yourself a break for a day. Then start again tomorrow. Take care, G >From: deepta_69@... >Reply-To: CHARGEegroups >To: CHARGEegroups >Subject: Very frustrated >Date: Fri, 20 Oct 2000 15:41:10 -0000 > >Hi, >I am going to vent my frustration here. I just spent 1/2 hr with >Amita trying to get her to taste/feed / anything. She clenches her >teeth and shakes her head and will do anyhting other than open her >mouth for taste. I know many of you are in the same boat as me so you >will understand. I do know all the reasons for persisting and >staying calm but it got to me today. I do the nuk brush and all and >she'll cooperate to a certain extent only. I can't talk to my >friends, they sympathise but do not understand the full extent of >what we go thru'. Sometimes I wish that magically she will start >eating. The problem is also that everyone (relatives, parents, in- >laws)keeps asking me .. Is she eating thru' the mouth now? Do you >give her taste? Some water? I think that all expect that once you >start making progress it will be very quick and the button will be >gone? So the '20 questions' keeps happening every week. Oh, don't get >me wrong here.. I do understand that all of them do this out of >concern for us and her, but explaing week after week that no, she >isn't, there is aversion, sensory isuues etc is putting so much >pressure on me, sometimes I just sit and cry. On top of that is worry >about all the other stuff... hearing, life etc. I guess I am feeling >overwhelmed. Any ways, it is time for her breakfast now.. got to go.. >thanks for listening.. >Deepta > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July >20-22, 2001. Information will be available first in CHARGE Accounts, the >CHARGE Syndrome Foundation's newsletter. " > >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 _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 Deepta, I feel for you.. especially with those that don't understand.. in the almost nine years Aari's been around I have gone the gamut, from explaining everything when they ask.. to ignoring the questions because I know they will NEVER get it. I always love the one where they say " Just MAKE him do it, you're babying him too much " We're here for you.. vent to us anytime.. and give Amita a hug for me.. Casey, mom to Dawn 21 HH, Ken 11 ADHD, and 8 CHARGE AIM ZeeCasey, ICQ# 728514 http://www.geocities.com/Heartland/1220 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 Deepta- It's ok to feel frustrated sometimes. In fact, it's a reasonable response to the stuff we have to deal with every day. You did just the right thing by sharing with us. You're right -- we do understand completely. I agree with that it's ok to just take a break from it sometimes. I know consistency is important, but if you're stressed then the feeding experience won't be a good one anyway. Maybe Amita would be thankful for the break too. She will make progress, and it will get better. You hang in there and do what you need to do to cope. I always have to remind myself that I can only do so much -- and even my 100% will never be "enough". There will always be more I could have done -- if only... I had more time... or I had more money... or the services were closer... or whatever. Since our kids have issues in so many areas, there is just more than a person can deal with. You can't focus on everything all the time so you pick one thing then switch to something else later. I remember being at the same place you are now and thinking Aubrie would never eat. And I couldn't understand how a kid could not eat. It used to drive me crazy trying to comprehend how a kid could not have a desire to eat. But, you know, Aubrie did it. She's totally oral now. She still can't eat everything with great skill, but she wants and tries to eat everything! She's a skinny little thing and eats small amounts at a time. Pediasure helps maintain her weight while she continues to develop her eating skills. Amita will make progress too!! Hopefully, she will have a burst of development. I remember Aubrie made significant changes after a session of cranial sacral therapy. I'm not certain that the CST is really the cause for the change, but it sure seemed that way. It was the only CST session she had, but after it she suddenly was more accepting of food. Another turning point was when she had her first lollipop. It's like that turned on a switch for her that made her want to try more. So keep plugging away at it but give yourself a break when you need one. She will get there eventually. And vent to us when you've had enough of all the well-meaning friends and relatives who don't get it! Michele W Aubrie's mom (almost 3 yrs) Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 I know how you feel...my son is tube fed and for years my father-in- law would say upon a greeting...is he eating by mouth yet??? finally I said it is going to be slow and I told others to let him know that he was not to ask that any more..I just wanted to say I do know how you feel and your friends dont really know...but they care and that counts for something...hang in there!!!!!It gets better. ck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 Deepta, We go through this all the time with my 3 year old son. He is so stubborn when it comes to his mouth. I have done everything possible for him and what I realized is, after 3 years, he will do what HE feels he can do. Imagine someone trying to stick something in your mouth that is unpleasing to you. Plus, they are afraid, because there is a reason they aren't eating. I work with his OT and other feeding people. What is now working, and is eliminating behavioral problems is to start extremely slowly, even if it seems so ridiculous to you or anyone else, this is where they need to begin. Presently, my son takes 4 tastes of a liquid on a toothette, he is very compliant and now asks for these tastes. Remember, it took 1 month to get to this point, where he will do this!!! He is telling us when he is ready to move on. All these " experts " say to move faster, but you can't. There were times when I would get so mad at him and then I'd have to step back and say " am I doing this for him or me? " The other thing is to have a routine, but let realistic life take over. Follow your routine, but don't be so rigid you can't fall out of the routine for a day. Let your child direct you (not to a point where you are being bossed), but really listen to your child's queue about eating. You can't make it so stressful for yourself or her as you see you end up very frustrated. If she refuses, ignore her and try again later. As for people asking " is she eating yet " , we get that all the time. I just say, it is going very very slowly, and to ask me about it again next year. Oh, if she won't open her mouth, take a mirror. Let her look in the mirror and tell her to put for instance, a cheerio on her head, then her cheek, then her chin and let her feel it on her face, then eventually get to her lips, and over a few days work it to her licking it on her tongue, but be very careful, don't go right to the mouth. This works well with my son. Anything that isn't threatening they will do. The nuk brush is not threatening, she doesn't have to taste or swallow anything. Sorry for the long response. Good luck, I know exactly how you feel. Debbie Matasker mom to 3 w/CHARGE, 5, andra 15 mths Very frustrated Hi, I am going to vent my frustration here. I just spent 1/2 hr with Amita trying to get her to taste/feed / anything. She clenches her teeth and shakes her head and will do anyhting other than open her mouth for taste. I know many of you are in the same boat as me so you will understand. I do know all the reasons for persisting and staying calm but it got to me today. I do the nuk brush and all and she'll cooperate to a certain extent only. I can't talk to my friends, they sympathise but do not understand the full extent of what we go thru'. Sometimes I wish that magically she will start eating. The problem is also that everyone (relatives, parents, in- laws)keeps asking me .. Is she eating thru' the mouth now? Do you give her taste? Some water? I think that all expect that once you start making progress it will be very quick and the button will be gone? So the '20 questions' keeps happening every week. Oh, don't get me wrong here.. I do understand that all of them do this out of concern for us and her, but explaing week after week that no, she isn't, there is aversion, sensory isuues etc is putting so much pressure on me, sometimes I just sit and cry. On top of that is worry about all the other stuff... hearing, life etc. I guess I am feeling overwhelmed. Any ways, it is time for her breakfast now.. got to go.. thanks for listening.. Deepta " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Deepta, I know how you feel. My daughter is 5 now & is still completely tube fed. But we are finally making a big step- for the first time, she is starting to dip her fingers in applesauce & lick them!! It seems like such a small thing & it's taken a long time, but it's a step in the right direction! I know how hard it is to be patient w/ this process but take a breather & remind yourself that she will progress at her own pace- & when she makes progress towards eating, no matter how big or small, you will truly appreciate it & you will be truly happy about it! We have a gift that a lot of other parents don't- we get to see just how very important the little steps are- most people take those things for granted & may not even notice them when they happen, but we KNOW those little things well & we appreciate them on the deepest level! Good Luck, Keep up the good work, & Hang in there... I agree w/ the parent who said to take a break sometimes- it can REALLY help! Lori:Mom2Cheyenne-CHaRgE > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Deepta, We are going through much the same with Kennedy, some days she takes a good amount (meaning a couple spoonfuls of pudding or minigo), but SHE has to do it (we aren't allowed anymore). And, other days she has no interest at all. Have you thought about just putting it in front of her and not helping or doing anything at all? Just letting her explore a spoon and a bit of whatever you are trying to get her to taste might make it a little more fun (although more messier!). Kennedy is a control freak so this worked well for her. I just offer something EVERY meal (she gets a tube feed at breakfast, lunch & supper so it works well) and I hope she will just get more interested as time goes by. People always still ask me if she's eating yet, too. I'm there with ya! This probably wasn't much help, but know that we are going through the same thing, I think it will come for her, but in her own time. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Very frustrated Hi,I am going to vent my frustration here. I just spent 1/2 hr with Amita trying to get her to taste/feed / anything. She clenches her teeth and shakes her head and will do anyhting other than open her mouth for taste. I know many of you are in the same boat as me so you will understand. I do know all the reasons for persisting and staying calm but it got to me today. I do the nuk brush and all and she'll cooperate to a certain extent only. I can't talk to my friends, they sympathise but do not understand the full extent of what we go thru'. Sometimes I wish that magically she will start eating. The problem is also that everyone (relatives, parents, in-laws)keeps asking me .. Is she eating thru' the mouth now? Do you give her taste? Some water? I think that all expect that once you start making progress it will be very quick and the button will be gone? So the '20 questions' keeps happening every week. Oh, don't get me wrong here.. I do understand that all of them do this out of concern for us and her, but explaing week after week that no, she isn't, there is aversion, sensory isuues etc is putting so much pressure on me, sometimes I just sit and cry. On top of that is worry about all the other stuff... hearing, life etc. I guess I am feeling overwhelmed. Any ways, it is time for her breakfast now.. got to go.. thanks for listening..Deepta"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Hello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this " thing " . I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Deepta, We could have just taken your message, put 's name in instead of Amita's, and signed my name at the bottom of it!!! We are going thru the IDENTICAL thing right now of teeth clenching and everything else! I am also tired of other's asking constantly if he's eating by mouth, especially when I just saw them two days ago and he wasn't eating, but today he magically will be??? I have started telling them plan on waiting til he's in JR High! Hopefully that will give us enough time. I am also frustrated w/the amount of stuff 'To Do' given by each therapist. We are only at the point w/ where he will let me touch his lips w/something and then he will lick it on his own time and terms. Our OT is great, but I feel we are making little or no progress. I have enjoyed reading that at least we are not alone, but it's tough to make it thru that time before they start actually doing something w/food! We are constantly stared at in restaurants like we are such rude parents for eating in front of our child, but he won't even tolerate touching something in front of him, so what do you do?? <<Big sigh!>> Oh well, glad to know I'm not alone. Good luck!! Ruth in SLC mom to (28 mos CHARGEr), wife to Mike _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 Dear , Don't feel helpless. Just be there for love, support, and understanding. Its so difficult watching your child go through so much. But there is a light at the end of the tunnel. It just takes a little longer to see it. Lydia mom to chrgr Kim 14, Alia 14, 16, and 19 bearchil@... wrote: Hello,God Bless you! I am the Great-aunt of a Charger born on Friday, October 13,2000. My little neice is now 6 days old and has had one surgery thus far.I know little or nothing about this "thing". I just will pray for you, yourbaby and everyone else. If you have any ideas as to how relatives can assistin a parent of a Charger; please let me know! I feel helpless.Love, deepta_69@... wrote:> Hi,> I am going to vent my frustration here. I just spent 1/2 hr with> Amita trying to get her to taste/feed / anything. She clenches her> teeth and shakes her head and will do anyhting other than open her> mouth for taste. I know many of you are in the same boat as me so you> will understand. I do know all the reasons for persisting and> staying calm but it got to me today. I do the nuk brush and all and> she'll cooperate to a certain extent only. I can't talk to my> friends, they sympathise but do not understand the full extent of> what we go thru'. Sometimes I wish that magically she will start> eating. The problem is also that everyone (relatives, parents, in-> laws)keeps asking me .. Is she eating thru' the mouth now? Do you> give her taste? Some water? I think that all expect that once you> start making progress it will be very quick and the button will be> gone? So the '20 questions' keeps happening every week. Oh, don't get> me wrong here.. I do understand that all of them do this out of> concern for us and her, but explaing week after week that no, she> isn't, there is aversion, sensory isuues etc is putting so much> pressure on me, sometimes I just sit and cry. On top of that is worry> about all the other stuff... hearing, life etc. I guess I am feeling> overwhelmed. Any ways, it is time for her breakfast now.. got to go..> thanks for listening..> Deepta>>> "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July> 20-22, 2001. Information will be available first in CHARGE Accounts, the> CHARGE Syndrome Foundation's newsletter.">> 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"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2000 Report Share Posted October 22, 2000 , Welcome to CHARGEland, and congratulations on your new baby niece. It's so great you're here already - that's a great way to help out the family. You could relay their questions to us and we will try and help as much as possible. My sister did this for me when my little Kennedy was still in the hospital and it was a big help. My outside lifeline. If you live close enough, you could always offer to go and sit with your niece for awhile so that mom & dad could get out for awhile. This would've been great (we spent almost 4 months in a hospital 6 hrs away from home ) Another great help would be to get mom & dad a CHARGE manual from the foundation (www.chargesyndrome.org) it's 20 dollars American and worth every penny. It's the most up to date-covering all areas of CHARGE book of it's kind. It will be a big help to mom & dad in learning all the stuff they will need to know. My only other advice would be not to be timid about learning to care for your niece - it may be things you never dreamed you'd be doing (tube feeds, trach care, etc). But, it really helps when you have family members who know how to do everything and you feel comfortable with so they can give you a break. Your little niece is in our thoughts! Please keep us posted when you can and let us know how she is doing. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Re: Very frustrated Hello,God Bless you! I am the Great-aunt of a Charger born on Friday, October 13,2000. My little neice is now 6 days old and has had one surgery thus far.I know little or nothing about this "thing". I just will pray for you, yourbaby and everyone else. If you have any ideas as to how relatives can assistin a parent of a Charger; please let me know! I feel helpless.Love, deepta_69@... wrote:> Hi,> I am going to vent my frustration here. I just spent 1/2 hr with> Amita trying to get her to taste/feed / anything. She clenches her> teeth and shakes her head and will do anyhting other than open her> mouth for taste. I know many of you are in the same boat as me so you> will understand. I do know all the reasons for persisting and> staying calm but it got to me today. I do the nuk brush and all and> she'll cooperate to a certain extent only. I can't talk to my> friends, they sympathise but do not understand the full extent of> what we go thru'. Sometimes I wish that magically she will start> eating. The problem is also that everyone (relatives, parents, in-> laws)keeps asking me .. Is she eating thru' the mouth now? Do you> give her taste? Some water? I think that all expect that once you> start making progress it will be very quick and the button will be> gone? So the '20 questions' keeps happening every week. Oh, don't get> me wrong here.. I do understand that all of them do this out of> concern for us and her, but explaing week after week that no, she> isn't, there is aversion, sensory isuues etc is putting so much> pressure on me, sometimes I just sit and cry. On top of that is worry> about all the other stuff... hearing, life etc. I guess I am feeling> overwhelmed. Any ways, it is time for her breakfast now.. got to go..> thanks for listening..> Deepta>>> "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July> 20-22, 2001. Information will be available first in CHARGE Accounts, the> CHARGE Syndrome Foundation's newsletter.">> 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"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Dear , Thank you so much for your message. I WILL order the Charge Manual for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and Aunts, Aunts and Uncles and her parents cousins as well. Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to assist. I have printed as much information as I can. I read it, then I send it to those of us that live in Texas. I would love to be with Rose and her parents. My husband is pushing me in that direction. I just don't want to be a burden to them. Today, we heard from Rose's Grandmother (my sister). When Rose was born, and a week thereafter, the "diagnosis" was that physical problems were on the left side of her little body. She had surgery last Friday to unblock her breathing passages. Her breathing tubes have been removed, however she is unable to breath and drink from a bottle at the same time. Rose is still in ICU. Her feeding tubes will remain intact. She HAS gained 6 ounces! Rose, was born with an "elf-like" ear on her left side and a closed eye on her left side. Today her Grandma told her Great-Grandma, after a hearing test (at three-days old), Rose will probably suffer from hearing loss in her right ear too. My sister (the Grandmother) also stated that there appears to be a problem with the right eye also. According to her, when Rose cries, no tears come and it's horrible! I guess I can give her my tears. The doctors have now decided some of this is due to palsy on the right side of her face. They will do more tests tomorrow. That's my update at this time. Thanks for listening and caring. I'll keep reading and sharing what yawl offer. Love, Great-Aunt of Rose (10 days old) Graeme & Weir wrote: ,Welcome to CHARGEland, and congratulations on your new baby niece. It's so great you're here already - that's a great way to help out the family. You could relay their questions to us and we will try and help as much as possible. My sister did this for me when my little Kennedy was still in the hospital and it was a big help. My outside lifeline.If you live close enough, you could always offer to go and sit with your niece for awhile so that mom & dad could get out for awhile. This would've been great (we spent almost 4 months in a hospital 6 hrs away from home ) Another great help would be to get mom & dad a CHARGE manual from the foundation (www.chargesyndrome.org) it's 20 dollars American and worth every penny. It's the most up to date-covering all areas of CHARGE book of it's kind. It will be a big help to mom & dad in learning all the stuff they will need to know. My only other advice would be not to be timid about learning to care for your niece - it may be things you never dreamed you'd be doing (tube feeds, trach care, etc). But, it really helps when you have family members who know how to do everything and you feel comfortable with so they can give you a break. Your little niece is in our thoughts! Please keep us posted when you can and let us know how she is doing. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme New Brunswick, Canada Visit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re: Very frustrated Hello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this "thing". I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter." > > 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Dear , Thank you so much for your message. I WILL order the Charge Manual for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and Aunts, Aunts and Uncles and her parents cousins as well. Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to assist. I have printed as much information as I can. I read it, then I send it to those of us that live in Texas. I would love to be with Rose and her parents. My husband is pushing me in that direction. I just don't want to be a burden to them. Today, we heard from Rose's Grandmother (my sister). When Rose was born, and a week thereafter, the "diagnosis" was that physical problems were on the left side of her little body. She had surgery last Friday to unblock her breathing passages. Her breathing tubes have been removed, however she is unable to breath and drink from a bottle at the same time. Rose is still in ICU. Her feeding tubes will remain intact. She HAS gained 6 ounces! Rose, was born with an "elf-like" ear on her left side and a closed eye on her left side. Today her Grandma told her Great-Grandma, after a hearing test (at three-days old), Rose will probably suffer from hearing loss in her right ear too. My sister (the Grandmother) also stated that there appears to be a problem with the right eye also. According to her, when Rose cries, no tears come and it's horrible! I guess I can give her my tears. The doctors have now decided some of this is due to palsy on the right side of her face. They will do more tests tomorrow. That's my update at this time. Thanks for listening and caring. I'll keep reading and sharing what yawl offer. Love, Great-Aunt of Rose (10 days old) Graeme & Weir wrote: ,Welcome to CHARGEland, and congratulations on your new baby niece. It's so great you're here already - that's a great way to help out the family. You could relay their questions to us and we will try and help as much as possible. My sister did this for me when my little Kennedy was still in the hospital and it was a big help. My outside lifeline.If you live close enough, you could always offer to go and sit with your niece for awhile so that mom & dad could get out for awhile. This would've been great (we spent almost 4 months in a hospital 6 hrs away from home ) Another great help would be to get mom & dad a CHARGE manual from the foundation (www.chargesyndrome.org) it's 20 dollars American and worth every penny. It's the most up to date-covering all areas of CHARGE book of it's kind. It will be a big help to mom & dad in learning all the stuff they will need to know. My only other advice would be not to be timid about learning to care for your niece - it may be things you never dreamed you'd be doing (tube feeds, trach care, etc). But, it really helps when you have family members who know how to do everything and you feel comfortable with so they can give you a break. Your little niece is in our thoughts! Please keep us posted when you can and let us know how she is doing. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme New Brunswick, Canada Visit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re: Very frustrated Hello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this "thing". I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter." > > 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Dear , Thank you so much for your message. I WILL order the Charge Manual for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and Aunts, Aunts and Uncles and her parents cousins as well. Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to assist. I have printed as much information as I can. I read it, then I send it to those of us that live in Texas. I would love to be with Rose and her parents. My husband is pushing me in that direction. I just don't want to be a burden to them. Today, we heard from Rose's Grandmother (my sister). When Rose was born, and a week thereafter, the "diagnosis" was that physical problems were on the left side of her little body. She had surgery last Friday to unblock her breathing passages. Her breathing tubes have been removed, however she is unable to breath and drink from a bottle at the same time. Rose is still in ICU. Her feeding tubes will remain intact. She HAS gained 6 ounces! Rose, was born with an "elf-like" ear on her left side and a closed eye on her left side. Today her Grandma told her Great-Grandma, after a hearing test (at three-days old), Rose will probably suffer from hearing loss in her right ear too. My sister (the Grandmother) also stated that there appears to be a problem with the right eye also. According to her, when Rose cries, no tears come and it's horrible! I guess I can give her my tears. The doctors have now decided some of this is due to palsy on the right side of her face. They will do more tests tomorrow. That's my update at this time. Thanks for listening and caring. I'll keep reading and sharing what yawl offer. Love, Great-Aunt of Rose (10 days old) Graeme & Weir wrote: ,Welcome to CHARGEland, and congratulations on your new baby niece. It's so great you're here already - that's a great way to help out the family. You could relay their questions to us and we will try and help as much as possible. My sister did this for me when my little Kennedy was still in the hospital and it was a big help. My outside lifeline.If you live close enough, you could always offer to go and sit with your niece for awhile so that mom & dad could get out for awhile. This would've been great (we spent almost 4 months in a hospital 6 hrs away from home ) Another great help would be to get mom & dad a CHARGE manual from the foundation (www.chargesyndrome.org) it's 20 dollars American and worth every penny. It's the most up to date-covering all areas of CHARGE book of it's kind. It will be a big help to mom & dad in learning all the stuff they will need to know. My only other advice would be not to be timid about learning to care for your niece - it may be things you never dreamed you'd be doing (tube feeds, trach care, etc). But, it really helps when you have family members who know how to do everything and you feel comfortable with so they can give you a break. Your little niece is in our thoughts! Please keep us posted when you can and let us know how she is doing. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme New Brunswick, Canada Visit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re: Very frustrated Hello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this "thing". I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter." > > 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 on 10/23/00 9:27 PM, bearchil@... at bearchil@... wrote: Dear , Thank you so much for your message. I WILL order the Charge Manual for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and Aunts, Aunts and Uncles and her parents cousins as well. Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to assist. I have printed as much information as I can. I read it, then I send it to those of us that live in Texas. I would love to be with Rose and her parents. My husband is pushing me in that direction. I just don't want to be a burden to them. Today, we heard from Rose's Grandmother (my sister). When Rose was born, and a week thereafter, the " diagnosis " was that physical problems were on the left side of her little body. She had surgery last Friday to unblock her breathing passages. Her breathing tubes have been removed, however she is unable to breath and drink from a bottle at the same time. Rose is still in ICU. Her feeding tubes will remain intact. She HAS gained 6 ounces! Rose, was born with an " elf-like " ear on her left side and a closed eye on her left side. Today her Grandma told her Great-Grandma, after a hearing test (at three-days old), Rose will probably suffer from hearing loss in her right ear too. My sister (the Grandmother) also stated that there appears to be a problem with the right eye also. According to her, when Rose cries, no tears come and it's horrible! I guess I can give her my tears. The doctors have now decided some of this is due to palsy on the right side of her face. They will do more tests tomorrow. That's my update at this time. Thanks for listening and caring. I'll keep reading and sharing what yawl offer. Love, Great-Aunt of Rose (10 days old) Graeme & Weir wrote: ,Welcome to CHARGEland, and congratulations on your new baby niece. It's so great you're here already - that's a great way to help out the family. You could relay their questions to us and we will try and help as much as possible. My sister did this for me when my little Kennedy was still in the hospital and it was a big help. My outside lifeline.If you live close enough, you could always offer to go and sit with your niece for awhile so that mom & dad could get out for awhile. This would've been great (we spent almost 4 months in a hospital 6 hrs away from home ) Another great help would be to get mom & dad a CHARGE manual from the foundation (www.chargesyndrome.org <http://www.chargesyndrome.org> ) it's 20 dollars American and worth every penny. It's the most up to date-covering all areas of CHARGE book of it's kind. It will be a big help to mom & dad in learning all the stuff they will need to know. My only other advice would be not to be timid about learning to care for your niece - it may be things you never dreamed you'd be doing (tube feeds, trach care, etc). But, it really helps when you have family members who know how to do everything and you feel comfortable with so they can give you a break. Your little niece is in our thoughts! Please keep us posted when you can and let us know how she is doing. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re: Very frustrated Hello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this " thing " . I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " 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 " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " 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 If Rose is in Michigan, I suggest contacting Bruce at Michigan State. She's a deafblind specialist and can help - or help find help - for a baby with hearing and vision problems. Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 We live in Livonia, Mich. (Detroit Metro area) and have a 10 year old CHarger. I would speak with the new family at any time...where do they live? Is there an over abundance of we chargers in Michigan or are we just the ones with computers and like to help eachother....lol I also am freindly with another mother who is not online in the Troy, Mich area with a charge boy who is around my son's age. Some of the Detriot area families get together in the summer. WE have not attended yet. ck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 , When my daughter Jillian was born, I had a mental block and could not bond with her because I had already had a CHARGE child die and she was my second. The reason I say thta is because Jillian had those "elf -like" ears and I when I would give her a bath, I would cry because she looked like a lizard to me. I know thta sounds awful but at the time I was in a mental state and scared to death. I didi not have that immediate "love"... it took antidepressenst to get me there.....Anyway, today Jillian is BEAUTIFUL!!!! She kinda "grew" into her ears... One is still floppy, but she has long hair now and you can't really notice her ear. It's awesome the Rose has so much support!!!!! Foley Mom to 5, ( my CHARGER in heaven) and Jillian 2 1/2 cHaRGE Re: Very frustratedHello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this "thing". I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter." > > 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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.orgIf Rose is in Michigan, I suggest contacting Bruce at Michigan State. She's a deafblind specialist and can help - or help find help - for a baby with hearing and vision problems. Martha "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Dear , Where in Michigan is Rose? We live in Mt. Pleasant, and there is a lot of support for CHARGE in this state. We have a picnic every summer for families, and my wife directs our state deaf-blind project. I know the project would be willing to be involved right away. Best, Tim Hartshorne (father of 11) bearchil@... wrote: Dear , Thank you so much for your message. I WILL order the Charge Manual for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and Aunts, Aunts and Uncles and her parents cousins as well. Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to assist. I have printed as much information as I can. I read it, then I send it to those of us that live in Texas. I would love to be with Rose and her parents. My husband is pushing me in that direction. I just don't want to be a burden to them. Today, we heard from Rose's Grandmother (my sister). When Rose was born, and a week thereafter, the "diagnosis" was that physical problems were on the left side of her little body. She had surgery last Friday to unblock her breathing passages. Her breathing tubes have been removed, however she is unable to breath and drink from a bottle at the same time. Rose is still in ICU. Her feeding tubes will remain intact. She HAS gained 6 ounces! Rose, was born with an "elf-like" ear on her left side and a closed eye on her left side. Today her Grandma told her Great-Grandma, after a hearing test (at three-days old), Rose will probably suffer from hearing loss in her right ear too. My sister (the Grandmother) also stated that there appears to be a problem with the right eye also. According to her, when Rose cries, no tears come and it's horrible! I guess I can give her my tears. The doctors have now decided some of this is due to palsy on the right side of her face. They will do more tests tomorrow. That's my update at this time. Thanks for listening and caring. I'll keep reading and sharing what yawl offer. Love, Great-Aunt of Rose (10 days old) Graeme & Weir wrote: ,Welcome to CHARGEland, and congratulations on your new baby niece. It's so great you're here already - that's a great way to help out the family. You could relay their questions to us and we will try and help as much as possible. My sister did this for me when my little Kennedy was still in the hospital and it was a big help. My outside lifeline.If you live close enough, you could always offer to go and sit with your niece for awhile so that mom & dad could get out for awhile. This would've been great (we spent almost 4 months in a hospital 6 hrs away from home ) Another great help would be to get mom & dad a CHARGE manual from the foundation (www.chargesyndrome.org) it's 20 dollars American and worth every penny. It's the most up to date-covering all areas of CHARGE book of it's kind. It will be a big help to mom & dad in learning all the stuff they will need to know. My only other advice would be not to be timid about learning to care for your niece - it may be things you never dreamed you'd be doing (tube feeds, trach care, etc). But, it really helps when you have family members who know how to do everything and you feel comfortable with so they can give you a break. Your little niece is in our thoughts! Please keep us posted when you can and let us know how she is doing. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to Graeme New Brunswick, Canada Visit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re: Very frustrated Hello, God Bless you! I am the Great-aunt of a Charger born on Friday, October 13, 2000. My little neice is now 6 days old and has had one surgery thus far. I know little or nothing about this "thing". I just will pray for you, your baby and everyone else. If you have any ideas as to how relatives can assist in a parent of a Charger; please let me know! I feel helpless. Love, deepta_69@... wrote: > Hi, > I am going to vent my frustration here. I just spent 1/2 hr with > Amita trying to get her to taste/feed / anything. She clenches her > teeth and shakes her head and will do anyhting other than open her > mouth for taste. I know many of you are in the same boat as me so you > will understand. I do know all the reasons for persisting and > staying calm but it got to me today. I do the nuk brush and all and > she'll cooperate to a certain extent only. I can't talk to my > friends, they sympathise but do not understand the full extent of > what we go thru'. Sometimes I wish that magically she will start > eating. The problem is also that everyone (relatives, parents, in- > laws)keeps asking me .. Is she eating thru' the mouth now? Do you > give her taste? Some water? I think that all expect that once you > start making progress it will be very quick and the button will be > gone? So the '20 questions' keeps happening every week. Oh, don't get > me wrong here.. I do understand that all of them do this out of > concern for us and her, but explaing week after week that no, she > isn't, there is aversion, sensory isuues etc is putting so much > pressure on me, sometimes I just sit and cry. On top of that is worry > about all the other stuff... hearing, life etc. I guess I am feeling > overwhelmed. Any ways, it is time for her breakfast now.. got to go.. > thanks for listening.. > Deepta > > > "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter." > > 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 "5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter." 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Hi! We live in the Lansing area. We received a call from the Univ of Mich yesterday that there is a new CHARGE baby close to us and would we be willing to talk with the family. Of course the answer is YES. Maybe the child is Rose? or maybe there is yet another newborn in Michigan? Where do Rose and her family live? Cheryl, , (7), (5, CHaRGE) MI >>> Tim.hartshorne@... 10/24/00 09:09AM >>> Dear , Where in Michigan is Rose? We live in Mt. Pleasant, and there is a lot of support for CHARGE in this state. We have a picnic every summer for families, and my wife directs our state deaf-blind project. I know the project would be willing to be involved right away. Best, Tim Hartshorne (father of 11) bearchil@... wrote: > Dear , > Thank you so much for your message. I WILL order the Charge Manual > for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and > Aunts, Aunts and Uncles and her parents cousins as well. > > Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, > Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to > assist. I have printed as much information as I can. I read it, then > I send it to those of us that live in Texas. I would love to be with > Rose and her parents. My husband is pushing me in that direction. I > just don't want to be a burden to them. > > Today, we heard from Rose's Grandmother (my sister). When Rose was > born, and a week thereafter, the " diagnosis " was that physical > problems were on the left side of her little body. She had surgery > last Friday to unblock her breathing passages. Her breathing tubes > have been removed, however she is unable to breath and drink from a > bottle at the same time. Rose is still in ICU. Her feeding tubes will > remain intact. She HAS gained 6 ounces! > > Rose, was born with an " elf-like " ear on her left side and a closed > eye on her left side. Today her Grandma told her Great-Grandma, after > a hearing test (at three-days old), Rose will probably suffer from > hearing loss in her right ear too. My sister (the Grandmother) also > stated that there appears to be a problem with the right eye also. > According to her, when Rose cries, no tears come and it's horrible! I > guess I can give her my tears. The doctors have now decided some of > this is due to palsy on the right side of her face. They will do more > tests tomorrow. > > That's my update at this time. Thanks for listening and caring. I'll > keep reading and sharing what yawl offer. > > Love, > Great-Aunt of Rose (10 days old) > > > Graeme & Weir wrote: > >> ,Welcome to CHARGEland, and congratulations on your new baby >> niece. It's so great you're here already - that's a great way >> to help out the family. You could relay their questions to us and >> we will try and help as much as possible. My sister did this for me >> when my little Kennedy was still in the hospital and it was a big >> help. My outside lifeline.If you live close enough, you could >> always offer to go and sit with your niece for awhile so that mom & >> dad could get out for awhile. This would've been great (we spent >> almost 4 months in a hospital 6 hrs away from home ) Another >> great help would be to get mom & dad a CHARGE manual from the >> foundation (www.chargesyndrome.org) it's 20 dollars American and >> worth every penny. It's the most up to date-covering all areas of >> CHARGE book of it's kind. It will be a big help to mom & dad in >> learning all the stuff they will need to know. My only other advice >> would be not to be timid about learning to care for your niece - it >> may be things you never dreamed you'd be doing (tube feeds, trach >> care, etc). But, it really helps when you have family members who >> know how to do everything and you feel comfortable with so they can >> give you a break. Your little niece is in our thoughts! Please >> keep us posted when you can and let us know how she is doing. >> Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to >> Graeme >> New Brunswick, Canada >> Visit the " Weir homepage " at: >> http://www.geocities.com/SunsetStrip/Palms/5716 >> ICQ #1426476 >> >> Re: Very frustrated >> Hello, >> >> God Bless you! I am the Great-aunt of a Charger born on >> Friday, October 13, >> 2000. My little neice is now 6 days old and has had one >> surgery thus far. >> >> I know little or nothing about this " thing " . I just will >> pray for you, your >> baby and everyone else. If you have any ideas as to how >> relatives can assist >> in a parent of a Charger; please let me know! I feel >> helpless. >> >> Love, >> >> deepta_69@... wrote: >> >> > Hi, >> > I am going to vent my frustration here. I just spent 1/2 >> hr with >> > Amita trying to get her to taste/feed / anything. She >> clenches her >> > teeth and shakes her head and will do anyhting other >> than open her >> > mouth for taste. I know many of you are in the same boat >> as me so you >> > will understand. I do know all the reasons for >> persisting and >> > staying calm but it got to me today. I do the nuk brush >> and all and >> > she'll cooperate to a certain extent only. I can't talk >> to my >> > friends, they sympathise but do not understand the full >> extent of >> > what we go thru'. Sometimes I wish that magically she >> will start >> > eating. The problem is also that everyone (relatives, >> parents, in- >> > laws)keeps asking me .. Is she eating thru' the mouth >> now? Do you >> > give her taste? Some water? I think that all expect that >> once you >> > start making progress it will be very quick and the >> button will be >> > gone? So the '20 questions' keeps happening every week. >> Oh, don't get >> > me wrong here.. I do understand that all of them do this >> out of >> > concern for us and her, but explaing week after week >> that no, she >> > isn't, there is aversion, sensory isuues etc is putting >> so much >> > pressure on me, sometimes I just sit and cry. On top of >> that is worry >> > about all the other stuff... hearing, life etc. I guess >> I am feeling >> > overwhelmed. Any ways, it is time for her breakfast >> now.. got to go.. >> > thanks for listening.. >> > Deepta >> > >> > >> > " 5th CHARGE Syndrome International Conference, >> Indianapolis, Indiana, July >> > 20-22, 2001. Information will be available first in >> CHARGE Accounts, the >> > CHARGE Syndrome Foundation's newsletter. " >> > >> > 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 >> >> >> >> >> >> " 5th CHARGE Syndrome International Conference, >> Indianapolis, Indiana, July >> 20-22, 2001. Information will be available first in CHARGE >> Accounts, the >> CHARGE Syndrome Foundation's newsletter. " >> >> 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 >> >> >> " 5th CHARGE Syndrome International Conference, Indianapolis, >> Indiana, July >> 20-22, 2001. Information will be available first in CHARGE Accounts, >> the >> CHARGE Syndrome Foundation's newsletter. " >> >> 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Hi! I think that that is the MI CHARGE picinic that was held in the Detroit area for a few years. Cheryl, , (7), (5, CHaRGE) MI >>> TKRENCICK1@... 10/24/00 10:25AM >>> Some of the Detriot area families get together in the summer. WE have not attended yet. ck " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2000 Report Share Posted October 24, 2000 Cheryl, Whoever it is, please let them know about the deaf-blind project. One of our goals is to work with children from as young an age as possible. We can do so much more that way. DB Central's toll free number is 1-. We now have both a technical consultant and a family consultant. Tim Tim Hartshorne Cheryl Swenson wrote: > Hi! > We live in the Lansing area. We received a call from the Univ of Mich yesterday that there is a new CHARGE baby close to us and would we be willing to talk with the family. Of course the answer is YES. Maybe the child is Rose? or maybe there is yet another newborn in Michigan? Where do Rose and her family live? > > Cheryl, , (7), (5, CHaRGE) > MI > > >>> Tim.hartshorne@... 10/24/00 09:09AM >>> > Dear , > > Where in Michigan is Rose? We live in Mt. Pleasant, and there is a lot > of support for CHARGE in this state. We have a picnic every summer for > families, and my wife directs our state deaf-blind project. I know the > project would be willing to be involved right away. > > Best, > Tim Hartshorne (father of 11) > > bearchil@... wrote: > > > Dear , > > Thank you so much for your message. I WILL order the Charge Manual > > for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and > > Aunts, Aunts and Uncles and her parents cousins as well. > > > > Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, > > Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to > > assist. I have printed as much information as I can. I read it, then > > I send it to those of us that live in Texas. I would love to be with > > Rose and her parents. My husband is pushing me in that direction. I > > just don't want to be a burden to them. > > > > Today, we heard from Rose's Grandmother (my sister). When Rose was > > born, and a week thereafter, the " diagnosis " was that physical > > problems were on the left side of her little body. She had surgery > > last Friday to unblock her breathing passages. Her breathing tubes > > have been removed, however she is unable to breath and drink from a > > bottle at the same time. Rose is still in ICU. Her feeding tubes will > > remain intact. She HAS gained 6 ounces! > > > > Rose, was born with an " elf-like " ear on her left side and a closed > > eye on her left side. Today her Grandma told her Great-Grandma, after > > a hearing test (at three-days old), Rose will probably suffer from > > hearing loss in her right ear too. My sister (the Grandmother) also > > stated that there appears to be a problem with the right eye also. > > According to her, when Rose cries, no tears come and it's horrible! I > > guess I can give her my tears. The doctors have now decided some of > > this is due to palsy on the right side of her face. They will do more > > tests tomorrow. > > > > That's my update at this time. Thanks for listening and caring. I'll > > keep reading and sharing what yawl offer. > > > > Love, > > Great-Aunt of Rose (10 days old) > > > > > > Graeme & Weir wrote: > > > >> ,Welcome to CHARGEland, and congratulations on your new baby > >> niece. It's so great you're here already - that's a great way > >> to help out the family. You could relay their questions to us and > >> we will try and help as much as possible. My sister did this for me > >> when my little Kennedy was still in the hospital and it was a big > >> help. My outside lifeline.If you live close enough, you could > >> always offer to go and sit with your niece for awhile so that mom & > >> dad could get out for awhile. This would've been great (we spent > >> almost 4 months in a hospital 6 hrs away from home ) Another > >> great help would be to get mom & dad a CHARGE manual from the > >> foundation (www.chargesyndrome.org) it's 20 dollars American and > >> worth every penny. It's the most up to date-covering all areas of > >> CHARGE book of it's kind. It will be a big help to mom & dad in > >> learning all the stuff they will need to know. My only other advice > >> would be not to be timid about learning to care for your niece - it > >> may be things you never dreamed you'd be doing (tube feeds, trach > >> care, etc). But, it really helps when you have family members who > >> know how to do everything and you feel comfortable with so they can > >> give you a break. Your little niece is in our thoughts! Please > >> keep us posted when you can and let us know how she is doing. > >> Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to > >> Graeme > >> New Brunswick, Canada > >> Visit the " Weir homepage " at: > >> http://www.geocities.com/SunsetStrip/Palms/5716 > >> ICQ #1426476 > >> > >> Re: Very frustrated > >> Hello, > >> > >> God Bless you! I am the Great-aunt of a Charger born on > >> Friday, October 13, > >> 2000. My little neice is now 6 days old and has had one > >> surgery thus far. > >> > >> I know little or nothing about this " thing " . I just will > >> pray for you, your > >> baby and everyone else. If you have any ideas as to how > >> relatives can assist > >> in a parent of a Charger; please let me know! I feel > >> helpless. > >> > >> Love, > >> > >> deepta_69@... wrote: > >> > >> > Hi, > >> > I am going to vent my frustration here. I just spent 1/2 > >> hr with > >> > Amita trying to get her to taste/feed / anything. She > >> clenches her > >> > teeth and shakes her head and will do anyhting other > >> than open her > >> > mouth for taste. I know many of you are in the same boat > >> as me so you > >> > will understand. I do know all the reasons for > >> persisting and > >> > staying calm but it got to me today. I do the nuk brush > >> and all and > >> > she'll cooperate to a certain extent only. I can't talk > >> to my > >> > friends, they sympathise but do not understand the full > >> extent of > >> > what we go thru'. Sometimes I wish that magically she > >> will start > >> > eating. The problem is also that everyone (relatives, > >> parents, in- > >> > laws)keeps asking me .. Is she eating thru' the mouth > >> now? Do you > >> > give her taste? Some water? I think that all expect that > >> once you > >> > start making progress it will be very quick and the > >> button will be > >> > gone? So the '20 questions' keeps happening every week. > >> Oh, don't get > >> > me wrong here.. I do understand that all of them do this > >> out of > >> > concern for us and her, but explaing week after week > >> that no, she > >> > isn't, there is aversion, sensory isuues etc is putting > >> so much > >> > pressure on me, sometimes I just sit and cry. On top of > >> that is worry > >> > about all the other stuff... hearing, life etc. I guess > >> I am feeling > >> > overwhelmed. Any ways, it is time for her breakfast > >> now.. got to go.. > >> > thanks for listening.. > >> > Deepta > >> > > >> > > >> > " 5th CHARGE Syndrome International Conference, > >> Indianapolis, Indiana, July > >> > 20-22, 2001. Information will be available first in > >> CHARGE Accounts, the > >> > CHARGE Syndrome Foundation's newsletter. " > >> > > >> > 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 > >> > >> > >> > >> > >> > >> " 5th CHARGE Syndrome International Conference, > >> Indianapolis, Indiana, July > >> 20-22, 2001. Information will be available first in CHARGE > >> Accounts, the > >> CHARGE Syndrome Foundation's newsletter. " > >> > >> 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 > >> > >> > >> " 5th CHARGE Syndrome International Conference, Indianapolis, > >> Indiana, July > >> 20-22, 2001. Information will be available first in CHARGE Accounts, > >> the > >> CHARGE Syndrome Foundation's newsletter. " > >> > >> 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 > > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2000 Report Share Posted October 25, 2000 Will do Tim (and ). Cheryl >>> Tim.hartshorne@... 10/24/00 10:48AM >>> Cheryl, Whoever it is, please let them know about the deaf-blind project. One of our goals is to work with children from as young an age as possible. We can do so much more that way. DB Central's toll free number is 1-. We now have both a technical consultant and a family consultant. Tim Tim Hartshorne Cheryl Swenson wrote: > Hi! > We live in the Lansing area. We received a call from the Univ of Mich yesterday that there is a new CHARGE baby close to us and would we be willing to talk with the family. Of course the answer is YES. Maybe the child is Rose? or maybe there is yet another newborn in Michigan? Where do Rose and her family live? > > Cheryl, , (7), (5, CHaRGE) > MI > > >>> Tim.hartshorne@... 10/24/00 09:09AM >>> > Dear , > > Where in Michigan is Rose? We live in Mt. Pleasant, and there is a lot > of support for CHARGE in this state. We have a picnic every summer for > families, and my wife directs our state deaf-blind project. I know the > project would be willing to be involved right away. > > Best, > Tim Hartshorne (father of 11) > > bearchil@... wrote: > > > Dear , > > Thank you so much for your message. I WILL order the Charge Manual > > for Rose's parents, Grandparents, Great-Grandparents, Great Uncles and > > Aunts, Aunts and Uncles and her parents cousins as well. > > > > Unfortunately, Rose lives in Michigan, I live in Texas. Fortunately, > > Rose has Grandparents, Aunts, Uncles, Great-Aunts and Great-Uncles to > > assist. I have printed as much information as I can. I read it, then > > I send it to those of us that live in Texas. I would love to be with > > Rose and her parents. My husband is pushing me in that direction. I > > just don't want to be a burden to them. > > > > Today, we heard from Rose's Grandmother (my sister). When Rose was > > born, and a week thereafter, the " diagnosis " was that physical > > problems were on the left side of her little body. She had surgery > > last Friday to unblock her breathing passages. Her breathing tubes > > have been removed, however she is unable to breath and drink from a > > bottle at the same time. Rose is still in ICU. Her feeding tubes will > > remain intact. She HAS gained 6 ounces! > > > > Rose, was born with an " elf-like " ear on her left side and a closed > > eye on her left side. Today her Grandma told her Great-Grandma, after > > a hearing test (at three-days old), Rose will probably suffer from > > hearing loss in her right ear too. My sister (the Grandmother) also > > stated that there appears to be a problem with the right eye also. > > According to her, when Rose cries, no tears come and it's horrible! I > > guess I can give her my tears. The doctors have now decided some of > > this is due to palsy on the right side of her face. They will do more > > tests tomorrow. > > > > That's my update at this time. Thanks for listening and caring. I'll > > keep reading and sharing what yawl offer. > > > > Love, > > Great-Aunt of Rose (10 days old) > > > > > > Graeme & Weir wrote: > > > >> ,Welcome to CHARGEland, and congratulations on your new baby > >> niece. It's so great you're here already - that's a great way > >> to help out the family. You could relay their questions to us and > >> we will try and help as much as possible. My sister did this for me > >> when my little Kennedy was still in the hospital and it was a big > >> help. My outside lifeline.If you live close enough, you could > >> always offer to go and sit with your niece for awhile so that mom & > >> dad could get out for awhile. This would've been great (we spent > >> almost 4 months in a hospital 6 hrs away from home ) Another > >> great help would be to get mom & dad a CHARGE manual from the > >> foundation (www.chargesyndrome.org) it's 20 dollars American and > >> worth every penny. It's the most up to date-covering all areas of > >> CHARGE book of it's kind. It will be a big help to mom & dad in > >> learning all the stuff they will need to know. My only other advice > >> would be not to be timid about learning to care for your niece - it > >> may be things you never dreamed you'd be doing (tube feeds, trach > >> care, etc). But, it really helps when you have family members who > >> know how to do everything and you feel comfortable with so they can > >> give you a break. Your little niece is in our thoughts! Please > >> keep us posted when you can and let us know how she is doing. > >> Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to > >> Graeme > >> New Brunswick, Canada > >> Visit the " Weir homepage " at: > >> http://www.geocities.com/SunsetStrip/Palms/5716 > >> ICQ #1426476 > >> > >> Re: Very frustrated > >> Hello, > >> > >> God Bless you! I am the Great-aunt of a Charger born on > >> Friday, October 13, > >> 2000. My little neice is now 6 days old and has had one > >> surgery thus far. > >> > >> I know little or nothing about this " thing " . I just will > >> pray for you, your > >> baby and everyone else. If you have any ideas as to how > >> relatives can assist > >> in a parent of a Charger; please let me know! I feel > >> helpless. > >> > >> Love, > >> > >> deepta_69@... wrote: > >> > >> > Hi, > >> > I am going to vent my frustration here. I just spent 1/2 > >> hr with > >> > Amita trying to get her to taste/feed / anything. She > >> clenches her > >> > teeth and shakes her head and will do anyhting other > >> than open her > >> > mouth for taste. I know many of you are in the same boat > >> as me so you > >> > will understand. I do know all the reasons for > >> persisting and > >> > staying calm but it got to me today. I do the nuk brush > >> and all and > >> > she'll cooperate to a certain extent only. I can't talk > >> to my > >> > friends, they sympathise but do not understand the full > >> extent of > >> > what we go thru'. Sometimes I wish that magically she > >> will start > >> > eating. The problem is also that everyone (relatives, > >> parents, in- > >> > laws)keeps asking me .. Is she eating thru' the mouth > >> now? Do you > >> > give her taste? Some water? I think that all expect that > >> once you > >> > start making progress it will be very quick and the > >> button will be > >> > gone? So the '20 questions' keeps happening every week. > >> Oh, don't get > >> > me wrong here.. I do understand that all of them do this > >> out of > >> > concern for us and her, but explaing week after week > >> that no, she > >> > isn't, there is aversion, sensory isuues etc is putting > >> so much > >> > pressure on me, sometimes I just sit and cry. On top of > >> that is worry > >> > about all the other stuff... hearing, life etc. I guess > >> I am feeling > >> > overwhelmed. Any ways, it is time for her breakfast > >> now.. got to go.. > >> > thanks for listening.. > >> > Deepta > >> > > >> > > >> > " 5th CHARGE Syndrome International Conference, > >> Indianapolis, Indiana, July > >> > 20-22, 2001. Information will be available first in > >> CHARGE Accounts, the > >> > CHARGE Syndrome Foundation's newsletter. " > >> > > >> > 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 > >> > >> > >> > >> > >> > >> " 5th CHARGE Syndrome International Conference, > >> Indianapolis, Indiana, July > >> 20-22, 2001. Information will be available first in CHARGE > >> Accounts, the > >> CHARGE Syndrome Foundation's newsletter. " > >> > >> 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 > >> > >> > >> " 5th CHARGE Syndrome International Conference, Indianapolis, > >> Indiana, July > >> 20-22, 2001. Information will be available first in CHARGE Accounts, > >> the > >> CHARGE Syndrome Foundation's newsletter. " > >> > >> 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 > > > > > " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > 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 " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July 20-22, 2001. Information will be available first in CHARGE Accounts, the CHARGE Syndrome Foundation's newsletter. " 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 Quote Link to comment Share on other sites More sharing options...
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