Guest guest Posted November 27, 2001 Report Share Posted November 27, 2001 Dawn, I used to live in Virginia, but always went camping in West Virginia!! What beautiful country that is!! By the way, if I move in, could I bring my husband and children???? They have this tendency to follow me whereever I go!!! Kathi > >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: [Rpolychondritis kathi >Date: Tue, 27 Nov 2001 04:22:15 -0800 (PST) > >kathi >i live in west virginia. come on down. would love >to meet you. > >dawn >\ >--- Kathi Goodwin wrote: > > Okay Dawn-- where do you live?? The way I feel > > right now, I may just move > > in with you!! > > Kathi > > > > > > > > > >Reply-To: Rpolychondritis > > >To: Rpolychondritis > > >Subject: Re: Heidi & Dawn > > >Date: Mon, 26 Nov 2001 12:41:57 -0800 (PST) > > > > > >Oh lu > > >not flaring, anything but that. if i lived closer > > i > > >would come and help. how about if you move up > > here, > > >you and claudia and kathi, and well heck how about > > the > > >whole group, then we could take care of each other. > > >dawn > > > > > >--- Lu1953@... wrote: > > > > LOL Oh Dawn, > > > > I'm trying, I can't do much without just > > totally > > > > giving out. We did put up > > > > the tree, no, it's not finished but up. > > Christmas > > > > will be at my house again > > > > this year. Gosh I have to get on the ball. Punch > > me > > > > a big kick from your > > > > house to mine. > > > > But don't kick my ears I am flaring again. I > > promise > > > > I have been taking my > > > > medicine. > > > > Love you > > > > Lu > > > > > > > > > NOW IF WE CAN GET > > > > > CLAUDIA AND LU ON THE BALL WE'LL HAVE IT MADE. > > > > > > > > > > DAWN > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >__________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 i live close to morgantown, in a small town next to grafton, wv. home of the mothers day shrine. if you get this way give a yell maybe we can get together dawn Dawn is it named after you? town? Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 i live close to morgantown, in a small town next to grafton, wv. home of the mothers day shrine. if you get this way give a yell maybe we can get together dawn Dawn is it named after you? town? Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Dawn, I forgot to mention the 2 dogs also!!!!! Just a few little minor details to work out!! Kathi > >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: Re: kathi >Date: Wed, 28 Nov 2001 04:48:46 -0800 (PST) > >Kathi >sure, the more the merrier, not sure what my husband >or dogs would say, but why not. >dawn > >--- Kathi Goodwin wrote: > > Dawn, > > I used to live in Virginia, but always went camping > > in West Virginia!! What > > beautiful country that is!! By the way, if I move > > in, could I bring my > > husband and children???? They have this tendency to > > follow me whereever I > > go!!! > > Kathi > > > > > > > >Reply-To: Rpolychondritis > > >To: Rpolychondritis > > >Subject: Re: [Rpolychondritis > > kathi > > >Date: Tue, 27 Nov 2001 04:22:15 -0800 (PST) > > > > > >kathi > > >i live in west virginia. come on down. would > > love > > >to meet you. > > > > > >dawn > > >\ > > >--- Kathi Goodwin > > wrote: > > > > Okay Dawn-- where do you live?? The way I feel > > > > right now, I may just move > > > > in with you!! > > > > Kathi > > > > > > > > > > > > > > > > > >Reply-To: Rpolychondritis > > > > >To: Rpolychondritis > > > > >Subject: Re: Heidi & Dawn > > > > >Date: Mon, 26 Nov 2001 12:41:57 -0800 (PST) > > > > > > > > > >Oh lu > > > > >not flaring, anything but that. if i lived > > closer > > > > i > > > > >would come and help. how about if you move up > > > > here, > > > > >you and claudia and kathi, and well heck how > > about > > > > the > > > > >whole group, then we could take care of each > > other. > > > > >dawn > > > > > > > > > >--- Lu1953@... wrote: > > > > > > LOL Oh Dawn, > > > > > > I'm trying, I can't do much without just > > > > totally > > > > > > giving out. We did put up > > > > > > the tree, no, it's not finished but up. > > > > Christmas > > > > > > will be at my house again > > > > > > this year. Gosh I have to get on the ball. > > Punch > > > > me > > > > > > a big kick from your > > > > > > house to mine. > > > > > > But don't kick my ears I am flaring again. I > > > > promise > > > > > > I have been taking my > > > > > > medicine. > > > > > > Love you > > > > > > Lu > > > > > > > > > > > > > NOW IF WE CAN GET > > > > > > > CLAUDIA AND LU ON THE BALL WE'LL HAVE IT > > MADE. > > > > > > > > > > > > > > DAWN > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >__________________________________________________ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Dawn, I forgot to mention the 2 dogs also!!!!! Just a few little minor details to work out!! Kathi > >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: Re: Re: kathi >Date: Wed, 28 Nov 2001 04:48:46 -0800 (PST) > >Kathi >sure, the more the merrier, not sure what my husband >or dogs would say, but why not. >dawn > >--- Kathi Goodwin wrote: > > Dawn, > > I used to live in Virginia, but always went camping > > in West Virginia!! What > > beautiful country that is!! By the way, if I move > > in, could I bring my > > husband and children???? They have this tendency to > > follow me whereever I > > go!!! > > Kathi > > > > > > > >Reply-To: Rpolychondritis > > >To: Rpolychondritis > > >Subject: Re: [Rpolychondritis > > kathi > > >Date: Tue, 27 Nov 2001 04:22:15 -0800 (PST) > > > > > >kathi > > >i live in west virginia. come on down. would > > love > > >to meet you. > > > > > >dawn > > >\ > > >--- Kathi Goodwin > > wrote: > > > > Okay Dawn-- where do you live?? The way I feel > > > > right now, I may just move > > > > in with you!! > > > > Kathi > > > > > > > > > > > > > > > > > >Reply-To: Rpolychondritis > > > > >To: Rpolychondritis > > > > >Subject: Re: Heidi & Dawn > > > > >Date: Mon, 26 Nov 2001 12:41:57 -0800 (PST) > > > > > > > > > >Oh lu > > > > >not flaring, anything but that. if i lived > > closer > > > > i > > > > >would come and help. how about if you move up > > > > here, > > > > >you and claudia and kathi, and well heck how > > about > > > > the > > > > >whole group, then we could take care of each > > other. > > > > >dawn > > > > > > > > > >--- Lu1953@... wrote: > > > > > > LOL Oh Dawn, > > > > > > I'm trying, I can't do much without just > > > > totally > > > > > > giving out. We did put up > > > > > > the tree, no, it's not finished but up. > > > > Christmas > > > > > > will be at my house again > > > > > > this year. Gosh I have to get on the ball. > > Punch > > > > me > > > > > > a big kick from your > > > > > > house to mine. > > > > > > But don't kick my ears I am flaring again. I > > > > promise > > > > > > I have been taking my > > > > > > medicine. > > > > > > Love you > > > > > > Lu > > > > > > > > > > > > > NOW IF WE CAN GET > > > > > > > CLAUDIA AND LU ON THE BALL WE'LL HAVE IT > > MADE. > > > > > > > > > > > > > > DAWN > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >__________________________________________________ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 In a message dated 11/28/01 4:11:37 PM Pacific Standard Time, dmorgan26347@... writes: << do you think > this is a flare????or anything at all to do with the RP. Very letharic this > morning too. >> Dawn, I think you should call the dr. I have no idea what it is, but it sounds like it should be taken care of fast.. Don't want you sick for the holidays. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 In a message dated 11/28/01 4:11:37 PM Pacific Standard Time, dmorgan26347@... writes: << do you think > this is a flare????or anything at all to do with the RP. Very letharic this > morning too. >> Dawn, I think you should call the dr. I have no idea what it is, but it sounds like it should be taken care of fast.. Don't want you sick for the holidays. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Dawn It sure sounds like you might be flaring. Oh you poor thing! Both eyes swollen shut. Please take it easy and get into the Dr. so they can give you something. Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 Dawn It sure sounds like you might be flaring. Oh you poor thing! Both eyes swollen shut. Please take it easy and get into the Dr. so they can give you something. Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 My gracious Dawn we could be related. It just dawned on me my mother-in-laws maiden name is . They are from that part of WV. Love, Ann -----Original Message-----From: Lu1953@... Sent: Wednesday, November 28, 2001 8:37 PMTo: Rpolychondritis Subject: Re: Dawn i live close to morgantown, in a small town next to grafton, wv. home of the mothers day shrine. if you get this way give a yell maybe we can get together dawn Dawn is it named after you? town? Lu DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2001 Report Share Posted November 28, 2001 My gracious Dawn we could be related. It just dawned on me my mother-in-laws maiden name is . They are from that part of WV. Love, Ann -----Original Message-----From: Lu1953@... Sent: Wednesday, November 28, 2001 8:37 PMTo: Rpolychondritis Subject: Re: Dawn i live close to morgantown, in a small town next to grafton, wv. home of the mothers day shrine. if you get this way give a yell maybe we can get together dawn Dawn is it named after you? town? Lu DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Hi My step daughter lives in York,England, Upper Poppleton, She married a guy from there, and they have their own Computer business, It is called Computer Design. They build and design there own computers. They have one son, , he just turned two. Kaitie loves England she said she feels like she has finally come home. We are of English/ish descent. We have only been there once, but are hoping to visit again, next year. I think england is really beautiful, the country side we got to see while on the train, was really great, we flew into manchester and then took a train to the York station, Then a cab to her house, i told her all that was missing was the horse and buggy. The homes are beautiful and very old. dawn a95pudniw@... wrote: hi dawn i live in staveley chesterfield Derbyshire and bev lives in calow chesterfield Derbyshire ask hubby how far is york from us and he says that it is about 60 mils away your right it is very cold and wet here being a Londoner which is down south and wormer i feel the cold even after living here for 20 years i still cant get use to the cold bev has lived here all her life and culls me nesh [Derbyshire term for need more meat on your bones] york is a lovely place to live your daughters very lucky they have a lovely christmas fair there all the works light, trimmings and all the stall workers were veteran clothes it relay is a sight to be seen you must try to get over at christmas time but remember to wair your winter woollies how long has your doughtier lived in york ??? dus she like it over here ?? do you get to see here much ??? its nice to talk to someone who's bin here when you talk to your doughtier ask her if she has herd of chesterfield it the town with the crooked spire she would of hard about that !!! well got to go keep happy pam/bev DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2001 Report Share Posted December 13, 2001 Hi My step daughter lives in York,England, Upper Poppleton, She married a guy from there, and they have their own Computer business, It is called Computer Design. They build and design there own computers. They have one son, , he just turned two. Kaitie loves England she said she feels like she has finally come home. We are of English/ish descent. We have only been there once, but are hoping to visit again, next year. I think england is really beautiful, the country side we got to see while on the train, was really great, we flew into manchester and then took a train to the York station, Then a cab to her house, i told her all that was missing was the horse and buggy. The homes are beautiful and very old. dawn a95pudniw@... wrote: hi dawn i live in staveley chesterfield Derbyshire and bev lives in calow chesterfield Derbyshire ask hubby how far is york from us and he says that it is about 60 mils away your right it is very cold and wet here being a Londoner which is down south and wormer i feel the cold even after living here for 20 years i still cant get use to the cold bev has lived here all her life and culls me nesh [Derbyshire term for need more meat on your bones] york is a lovely place to live your daughters very lucky they have a lovely christmas fair there all the works light, trimmings and all the stall workers were veteran clothes it relay is a sight to be seen you must try to get over at christmas time but remember to wair your winter woollies how long has your doughtier lived in york ??? dus she like it over here ?? do you get to see here much ??? its nice to talk to someone who's bin here when you talk to your doughtier ask her if she has herd of chesterfield it the town with the crooked spire she would of hard about that !!! well got to go keep happy pam/bev DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Things have been going ok here. Wyatt had his tube replaced with the button. It went super smooth. They had to re-circumcise (sp) him because the first they did not completely do it. Who knows why. Well they messed again. The poor kid is going to have to have it done for a 3rd time. We would just let it go but the glands keep getting infected so we can't. We also found out that his immune system is pretty weak. We have decided not to do anything about it. We will test in a couple more months and see if there are any changes and then go from there. Wy had his first t-ball game yesterday. One of the local little leagues set up a challenger league here. Each child is paired with an able bodied little league player. It was so cool to see. The person who organized it was in tears. He was so amazed that his idea came to life and he could not believe the determination of all of the kids. They had the Minnesota Twins mascot pitch the game. Wyatt was so excited as he was pushed around the bases. It was pretty amazing to see all of the kids. He has 8 more games before the season ends. Thanks for asking about us. Geri-Anne and Wyatt, Complex I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2004 Report Share Posted May 13, 2004 Bless his T-ball Heart. I wish there were more programs for Colby, even special Olympics was not as I thought it would be. Oh well, he would rather socialize anyway! To all the T-ball players out there, may you have the funnest time ever! mom to Colby,14,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 11, also healthy> >Reply-To: Mito >To: Mito >Subject: Dawn >Date: Mon, 10 May 2004 21:37:59 -0000 > Things have been going ok here. Wyatt had his tube replaced with the button. It went super smooth. They had to re-circumcise (sp) him because the first they did not completely do it. Who knows why. Well they messed again. The poor kid is going to have to have it done for a 3rd time. We would just let it go but the glands keep getting infected so we can't. We also found out that his immune system is pretty weak. We have decided not to do anything about it. We will test in a couple more months and see if there are any changes and then go from there. Wy had his first t-ball game yesterday. One of the local little leagues set up a challenger league here. Each child is paired with an able bodied little league player. It was so cool to see. The person who organized it was in tears. He was so amazed that his idea came to life and he could not believe the determination of all of the kids. They had the Minnesota Twins mascot pitch the game. Wyatt was so excited as he was pushed around the bases. It was pretty amazing to see all of the kids. He has 8 more games before the season ends. Thanks for asking about us. Geri-Anne and Wyatt, Complex I Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Every once in a while I try to put all the kids at the end of my notes rather than putting the typical "and the gang or kiddos" and the kids like it when I do. They thought it was neat to hear the characterists as the end in particular. Thanks for your compliment. I just look at us as a typical family, although larger, and couldn't imagine having less. I am not really a wonder woman, just do what needs to get accomplished and not get stressed about the tons of things that "could" be done around the home. We all like being a big family which is neat. When we adopted Kezia and Marquis all the other kids were asked if they wanted to and they wholeheartedly agreed and still wanted me to have more. We weren't actually planning on having more biological kids, but of course Zipporrah had her own opinion in that matter! As for Tirzah, it was a very scary time for us when she was 11 months old and had croup, asthma, and stopped eating and peeing. We took her to the local Er (Ames, IA) and they took her by ambulance to the nearest Children's Hospital in Des Moines (where we now live). They had discovered through blood work that she had vertually no platelets. They believed she had leukemia and needed help immediately. When we were at the Children's hospital a spinal tap was done (rather than a bone marrow test-which now everyone though to be strange-unless we are totally inaccurate in my hubby and my memories). It revealed no leukemia thankfully but still she was dealing with a mysterious platelet problem. She continued to decline for the first three days we were in the hospital despite treatment. She was so ill she couldn't sit up without falling asleep after 3-5 seconds. She was very near death and they explained that she had bone marrow failure for some reason. After she recovered the doctors tried to figure out why whe had the problem and questioned whether the croup threw her immune system off and caused it to happen. It took another month and a half to bring her platelts back up to a normal level and for her to get back to normal. We have never had any further problems with her health but it took us several years before we allowed her to be in a nursery with other children again and were very cautious with her. Now she always looks ill with very pale skin (brown hair/brown eyes-not a red-head) and black circles under her eyes, is very skinny and small framed (almost 8 years and 48 lbs.), has had eye problems unexplainable, dizziness, migraines, sensory issues, etc. but her visit to Dr. Whiteman this past spring did not reveal any bad bloodwork and he felt she was fine at the time. I am not so positive but have not seen any major stroke episodes yet and hope she doesn't decline in the future. Feel free to ask anything further about her or the other kids. Darla! Darla.I am curious after reading about your children. Please if you don't mind, can you tell me about Tirzah's bone marrow failure? I am curious. I know I say this all of the time, but my hats off to you with all of yor precious kids and probable mito to-you're amazing!!I know if I had the energy (and finances) I would have ten more just like the ones I have-illnesses and all. Got to love them! Thanks, Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 She recently began taking Previcid but none of the docs have suggested anything else. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma, chronic vomiting... Zipporrah (10 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (7), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Cyclic vomiting issues again > Darla, > > I don't know if she is on periactin but this has completely > stopped 's CVS. Hope she feels better.Head elevated while > sleeping would help too! > > > > Dawn > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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