Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Congratulations on your adoption!!!!!!!!! That is the most exciting news I have heard all week! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Dear , Congratulations on your adoption! When you have the chance email us all and let us know all the details about the kids. I don't know you but am so happy for you. Ginley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Hi Sue Thanks for your good wish' the children names and ages are Zoe 9,Fay 6, 4 and 2.I have two grown up children Tim 25 and 22 and two stepchildren 13 and Charlotte 12. My son also has EDS but very mild thank goodness. I have still got alot of pain in my left hip i need a new hip but the docs will not do it because of the dangers .Well keep me in your thoughts it help having my ceda famliy to share things with. Hugs and gang that is what we are going to know as i think ha ha >From: smginleyrn@... >Reply-To: cedaegroups >To: cedaegroups >Subject: Re: Hello >Date: Fri, 5 Jan 2001 08:03:13 EST > >Dear , >Congratulations on your adoption! When you have the chance email us all >and >let us know all the details about the kids. I don't know you but am so >happy >for you. > Ginley _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 Hi welcome back to the CEDA family. I joined the list in January,2000 and it is the best thing I ever did. I hav learned so much for all the family members and their support and understanding has been invaluable. My daughter Ann (24) and I both have Heds although I also have other vascular symptoms and haematurea due to thin kidney walls. We live in Scotland and can relate to problems with doctors so much. We have the job of educating our local hospital doctors and nurses - with varing degrees of success. Although I don't always respond to e-mails I always read them and pray for those who need prayer. Hugs, Lilian Heds, M.E. Fibromyalgia, CFS, viral arthritis and M.S. Bells wrote: > > Hi everyone, > > I was on this list a few years back looking for advice regarding my > daughter who has HEDS. Everyone was very helpful espesially Jill. I felt > very overwhlmed with s and my health and hearing about all the things > you all bravely face was too much to take in at the time. Picturing s > possible future was too much. > > I resubscribed last month as there is still so much unresolved and you all > seem to see and know more than the doctors here do. I'm thinking we need > to get out of Saskatchwan and to a childrens Hospital in Ont. or BC. Can > you recomend any specific doctors in Canada? > We need someone who understands the symptoms other thatn the hypermobiliy/ > joint pain and distocations. Kate doesn't need a surgeon. I think the > conective tissuses internally (organs and GI tract) are more what is > affecting her. She has venal pooling, Chronic Fatigue symptomes, chemical > and weather sensitivities.She is home most of the time (for past 5 years) > and has trouble standing for any length of time with out being lightheaded. > > The Rhumatoligist says he thinks it's all part of the EDS but is > inconsistant in explaing it and no amount of local referals has gained us > insight or help and follow up is almost nonexsistant. I haven't seen many > documents or research done on the aspects bothering her which may help him. > Any recomendations? I read everything at the national sites. > > I have enjoyed watching the understanding and support you all give to each > other and look forward to being out of the lurkers section. I have FM and > have other health problems myself and my memory is really poor these days > so if I reapeat myself you'll know why. ;-) > > thank you, > Jean > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 Welcome back, Jean. Barbara Uggen- HEDS Age 28 Seattle, WA Editor, EDS Today http://www.uggen.net/edstoday/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2001 Report Share Posted February 13, 2001 Hi This is , Petra's mom Petra sent an email do you think she might want email Petra as a pen pal? I think that you should get to a Childrens hospital so that she can see people who deal with this all the time. Right back okay ? Maybe you can give me some advice since is older. Talk to you soon. hello > Hi everyone, > > I was on this list a few years back looking for advice regarding my > daughter who has HEDS. Everyone was very helpful espesially Jill. I felt > very overwhlmed with s and my health and hearing about all the things > you all bravely face was too much to take in at the time. Picturing s > possible future was too much. > > I resubscribed last month as there is still so much unresolved and you all > seem to see and know more than the doctors here do. I'm thinking we need > to get out of Saskatchwan and to a childrens Hospital in Ont. or BC. Can > you recomend any specific doctors in Canada? > We need someone who understands the symptoms other thatn the hypermobiliy/ > joint pain and distocations. Kate doesn't need a surgeon. I think the > conective tissuses internally (organs and GI tract) are more what is > affecting her. She has venal pooling, Chronic Fatigue symptomes, chemical > and weather sensitivities.She is home most of the time (for past 5 years) > and has trouble standing for any length of time with out being lightheaded. > > > The Rhumatoligist says he thinks it's all part of the EDS but is > inconsistant in explaing it and no amount of local referals has gained us > insight or help and follow up is almost nonexsistant. I haven't seen many > documents or research done on the aspects bothering her which may help him. > Any recomendations? I read everything at the national sites. > > I have enjoyed watching the understanding and support you all give to each > other and look forward to being out of the lurkers section. I have FM and > have other health problems myself and my memory is really poor these days > so if I reapeat myself you'll know why. ;-) > > thank you, > Jean > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Joy, My family pract. said the chest pain could be unrelated to IPF. He is sending me to a heart doc for more tests. I passed a stress test OK last month. I also asked him to refer me to another pulm. doc to confirm my diagnosis. I'll be interested to hear what he has to say and I'll keep you posted. How does your chest pain affect you? Mine is almost all the time. The dr. I saw this morning didn't seem to concerned about the IPF, but the pulm dr was. How do we know who and what to believe? Gale in TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 Joy...how beautiful...you and your dad are lucky to have had each other. Love is what it's all about.... Sher ipf 5-06 Re: Re: Hello I'm interested to know what your doc says about your chest pains. I have them too...but no explanation. Joy 3/6 gale17444aol wrote: Joyce: Gosh, 10 years.. what strength. I don't know how long I have had this, probably a long time. I am not coughing at all (yet), just this tight pain in my chest. I'm seeing my primary tomorrow. Maybe he can tell me what it is. all for now.. Gale Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 My chest pain is just uncomfortable....and the past few days unnoticed. My plum said the same thing...but, on one of the many sites I have visited re: IPF, chest pain is mentioned. So, I'm ignoring it. I had bunch of tests a year ago 'cause my regular doc thought I was having a heart attact...off to ER, stay over night...went through many tests..and the catheter thing...answer: I have a very healthy heart...see a pumologist", so I did about 4 mos later! But, found out I have Interstital PF instead. I'm working through it. Joy Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Re: Re: Hello Joy, My family pract. said the chest pain could be unrelated to IPF. He is sending me to a heart doc for more tests. I passed a stress test OK last month. I also asked him to refer me to another pulm. doc to confirm my diagnosis. I'll be interested to hear what he has to say and I'll keep you posted. How does your chest pain affect you? Mine is almost all the time. The dr. I saw this morning didn't seem to concerned about the IPF, but the pulm dr was. How do we know who and what to believe? Gale in TX Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2008 Report Share Posted April 20, 2008 Hello Hopeisalive, Welcome and hope we can help in some small way. It is curious that your Dad just got a diagnosis. It must be that his MD didn't know what he was seeing. We have had many near where your Dad is and still come back to somewhat of an ok existence. The thing that is so worrisome is that he has to be on some meds that he can't tolerate. Meds are the most sensitive thing about this disease. We have no " stages " as they do fluctuate so much depending on so many things. Did he have surgery for his hips? That means he may have been medicated for surgery to his detriment. Not quite sure what you mean by " dreams for 8 years. " Sleep is usually a problem too. Hope we hear from you and let us know how YOU are doing. Is your Dad in a nh or at home and your Mom cares for him? Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. hello My father was diagnosised with LBD last week. I think however he is at the final stages. He has broken two hips since february and has a hard time swallowing and mom has a DNR that says not feeding tube. He is already on pureed foods and thick liquids. I am trying to get a time frame. He has had the dreams for at least 8 years. thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Sam - Sorry you are getting very little response on your message - usually we are rather talkative and welcoming - however we had our 4th bi-Annual conference in Cincinnati this weekend (I literally just walked in and logged on - 8 hour drive to Eastern PA) - Welcome to IMDSA - My is 10 and just finished 3rd grade - LOVES to confound doctors and teachers and school administrators - you name it - she proves them wrong! Her medical file is 3 inches thick but she is a trooper. She had heart surgery at 8 to close the holes that we did not know were there during her GI surgery. She had been in the hospital at least 3 other times and no one commented on her heart ;-) She has had pneumonia multiple times but never acts like she is sick - I sent her to AM kindergarten one day and took her to the doctor in the afternoon because of congestion and I was afraid she might have an ear infection and it turned out she had pneumonia! I am not a bad mother, or one who does not pay attention to her child - just does not ACT sick - ever - the only time she acted sick (at 6 months), she stopped breathing and we had a lovely ambulance ride to the hospital. Sorry if I am scaring you as is not a sickly child and she is a rather healthy, robust little girl who loves the idea of being in love. Just a " Normal " little girl who happens to have MDS. If you have any questions I am sure there are people here who have been there and done that. We have a lovely group of people some of whom I just met face to face for the first time this weekend (Casey, ) and others that I have known for years (Kristy, , ) and many, many others but I can not think of their names off the top of my head. We have some who are adults who have children and others who are just getting married in October (Christy - that's you!) But there are lots of lovely people here just now they are either still in Cincinnati or traveling back home. Darlene - Mom to (12) and (10) P.S. - I know there are other's in Canada (but I don't know which Providence). I know 's husband (, ?) is from Canada. I am not the 'official' greeter but I did not want you to be left wondering where everyone was. On Sun, Jul 12, 2009 at 2:44 AM, SAMANTHA LEBLANC wrote: > > > Hello Everyone > Here is a little bit about myself. > My name is Sam and I am a proud mother of 2 children. My oldest is 4 and > she is very energetic.My son will be 2 next month. My son was diagnosed at > birth with DS. When blood work came back my Dr. had said that he had > MosaicDS I am still trying to learn what ever is possible about MosiacDS. > My son is full of many surprises! > Please if there is anything any one can share with me I would be greatful. > P.S. > Is there anyone else from Canada? > Thank You > Sam > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2009 Report Share Posted July 13, 2009 Welcome to all the new members! My name is Sylvia Wormley and I am the IMDSA Family Connect Coordinator. I live in sdale, AZ with my husband Mark and two boys. is 10 years old and has MDS. He is in full inclusion in a regular classroom with a Para Educator. He goes to LRC for one on one reading and math 45 min. every day. He also receives Speech for 45 min. daily and OT is once a week. He attends an After school Program through the City that he walks to every day with friends and one staff member. This has been with all typical children so he has a lot of inclusion going on. is 16 and going to be a junior next year. He is actually harder to figure out than his little brother! We have our work cut out for us this coming school year trying to find the college he should attend. He is an amazing artist and gets above average grades. I've been told he can get into the art college of his choice. So we are researching colleges and scholarships this year! I would like to invite all new members to join the Family Connect Program. Click on the following link to go directly to the form. https://imdsa.dabbledb.com/page/imdsa/0cf18f89-a719-43fd-b262-304294f36bb1 Once you fill out the form I can connect you with other families in your area and those who have children the same age as your child. Have a great day!! Sylvia Wormley Family Connect Coordinator & mom to (16) and (10) MDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2009 Report Share Posted July 15, 2009 Darlene Thank You for your response. Now I am the one one being slow on them LOL There has been no heart problems as of yet except for a lot of colds. My family dr. doesn't seem to be concerned about it. I will talk to the Pediatrician. just stared walking full time this past month I am soo excited!!! Thank You again Sam > > > Hello Everyone > Here is a little bit about myself. > My name is Sam and I am a proud mother of 2 children. My oldest is 4 and > she is very energetic.My son will be 2 next month. My son was diagnosed at > birth with DS. When blood work came back my Dr. had said that he had > MosaicDS I am still trying to learn what ever is possible about MosiacDS. > My son is full of many surprises! > Please if there is anything any one can share with me I would be greatful. > P.S. > Is there anyone else from Canada? > Thank You > Sam > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Aisley - What are the requirements for your marketing class? Darlene > > > Hello everyone, I am Aisley Depew. I am the Fundraising chair for IMDSA. > I'm 17 and am a Senior at Edgewood High School in Trenton, Ohio. I was > introduced into the group by my aunt IMDSA President. I am doing this > to help out and also for my marketing class. > Thanks, > Aisley Depew > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 7 hours of work a week and i have to make porfolio of the thingg ive done eevery 9 weeks > > > Hello everyone, I am Aisley Depew. I am the Fundraising chair for IMDSA. > I'm 17 and am a Senior at Edgewood High School in Trenton, Ohio. I was > introduced into the group by my aunt IMDSA President. I am doing this > to help out and also for my marketing class. > Thanks, > Aisley Depew > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Hello -May, Yes, your messages are going out. I am sorry, I am often so busy that I just read quickly and only respond if I have something that I feel might be helpful to someone else. I will try to pay more attention to all emails. Sandy ________________________________ To: MosaicDS Sent: Mon, March 28, 2011 9:43:53 AM Subject: Hello Can someone tell me if my messages are going out please? I don't seem to be getting any replies and I'd like to speak to you all again soon. I miss you. Thanks -May Minett Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2011 Report Share Posted March 29, 2011 Hi Clare  I got it so yes they are going out. :-)  Teri Grubb Mom to Grace (mDs) 2yrs and Emma (mDs) 2 yrs Subject: Hello To: MosaicDS Date: Monday, March 28, 2011, 9:43 AM  Can someone tell me if my messages are going out please? I don't seem to be getting any replies and I'd like to speak to you all again soon. I miss you. Thanks -May Minett Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 this is pretty amazing you should give it a look http://www.finance15elnews.net/biz/?employment=1906775 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2012 Report Share Posted June 4, 2012 , I think you have been hacked... this is pretty amazing you should give it a look http://www.finance15elnews.net/biz/?employment=1906775 Quote Link to comment Share on other sites More sharing options...
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