Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 Hi Steph, My name is , and I was diagnosed with Classical EDS a little less than 2 years ago. I am 32, and have 3 girls,9, 11, and 13 who also have EDS. With this list you will find many friends and all the love and support you could ever ask for. I had a little trouble getting my genetcist visit covered. It was finally covered with referrals from my family DR and my ortho. If you have any specific questions, ask away. If I can't answer them maybe someone else on the list can. Welcome! F CEDS Missouri, USA --- jettagurl87@... wrote: > Hi everyone, > My name is Steph, I'm 18, and am hoping to soon get > a diagnosis of EDS. In > 1997 I was diagnosed with CFIDS, and in Dec. 1999 I > had surgery for Arnold > Chiari Malformation. I have always had problems > with hypermobility but they > seem to be getting worse. I'm having a lot of > problems wiht my joints > popping out and a lot of pain with that. My family > doctor and my physical > and occupational therapists all believe that I have > EDS and other doctors > that I've talked to believe that I have it also, so > on March 20 I am going > down to s Hopkins to see a geneticist and am > hoping to get some answers > then. If anyone has any suggestions on how to get > insurance to approve that > visit or any other suggestions for someone who > doesn't really have any > answers yet, I'd really appreciate it! > Steph > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 and Don Margroum I believe we have people in those areas, yes. Hearing the decision in being pro-active is just awesome to hear. Let all of us know, what's going on with everything you are comfortable in sharing with us. This is a ring of people eager to help. We are a family here am I welcome you! Welcome. -- Casey T Morton. " work on today, so tomorrow can be better " http://www.imdsa.org/ http://mosaicmoments.today.com/ http://mirrormysteries.today.com/ On Tue, May 26, 2009 at 3:38 PM, and Don Margroum < dvmargroum@...> wrote: > > > Hello everyone! I am really excited to have found this group! My hubby, > Don, and I are in the process of adopting a 5 month old beauty of a girl > named Remington. Remington was diagnosed with MDS at birth. As of now her > precentage is around 7%. After a recent visit witht he cardiologists at > CCHMC, we have learned that Remi's heart murmur is gone and the hole in her > heart has closed up! Yay! We have an appointment next week with a GI doc > about her stomach reflux. We are thinking she might have to have a scope > done to check everything out. Other than the gastro issues, Remington is > completely on target with her age but we have decided to go ahead and be > proactive and we will have a developmental interventionist come in from > First Steps. It can't hurt! > > We absloutely love having her and she is such a joy in our lives. We live > in Erlanger, KY and would love to connect with others in the NKY region and > in Cincinnati! > > Margroum mom to Remington > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 alas to my perfectionsim " we are family here and I welcome you " > and Don Margroum I believe we have people in those areas, yes. > Hearing the decision in being pro-active is just awesome to hear. Let all of > us know, what's going on with everything you are comfortable in sharing with > us. This is a ring of people eager to help. We are a family here am I > welcome you! > > Welcome. > -- > Casey T Morton. > " work on today, so tomorrow can be better " > http://www.imdsa.org/ > http://mosaicmoments.today.com/ > http://mirrormysteries.today.com/ > > > On Tue, May 26, 2009 at 3:38 PM, and Don Margroum < > dvmargroum@...> wrote: > >> >> >> Hello everyone! I am really excited to have found this group! My hubby, >> Don, and I are in the process of adopting a 5 month old beauty of a girl >> named Remington. Remington was diagnosed with MDS at birth. As of now her >> precentage is around 7%. After a recent visit witht he cardiologists at >> CCHMC, we have learned that Remi's heart murmur is gone and the hole in her >> heart has closed up! Yay! We have an appointment next week with a GI doc >> about her stomach reflux. We are thinking she might have to have a scope >> done to check everything out. Other than the gastro issues, Remington is >> completely on target with her age but we have decided to go ahead and be >> proactive and we will have a developmental interventionist come in from >> First Steps. It can't hurt! >> >> We absloutely love having her and she is such a joy in our lives. We live >> in Erlanger, KY and would love to connect with others in the NKY region and >> in Cincinnati! >> >> Margroum mom to Remington >> >> >> > -- Casey T Morton. " work on today, so tomorrow can be better " http://www.imdsa.org/ http://mosaicmoments.today.com/ http://mirrormysteries.today.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 LOL Casey! I knew you were going to do that! Casey<<<<the perfectionist! Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org http://www.mosaicmoments.today.com SAVE THE DATE! JULY 10-12 Cincinnati, Ohio USA BUILDING BRIDGES FOR DOWN SYNDROME RESEARCH & AWARENESS CONFERENCE > >> >> >> Hello everyone! I am really excited to have found this group! My hubby, >> Don, and I are in the process of adopting a 5 month old beauty of a girl >> named Remington. Remington was diagnosed with MDS at birth. As of now her >> precentage is around 7%. After a recent visit witht he cardiologists at >> CCHMC, we have learned that Remi's heart murmur is gone and the hole in her >> heart has closed up! Yay! We have an appointment next week with a GI doc >> about her stomach reflux. We are thinking she might have to have a scope >> done to check everything out. Other than the gastro issues, Remington is >> completely on target with her age but we have decided to go ahead and be >> proactive and we will have a developmental interventionist come in from >> First Steps. It can't hurt! >> >> We absloutely love having her and she is such a joy in our lives. We live >> in Erlanger, KY and would love to connect with others in the NKY region and >> in Cincinnati! >> >> Margroum mom to Remington >> >> >> > -- Casey T Morton. " work on today, so tomorrow can be better " http://www.imdsa. org/ http://mosaicmoment s.today.com/ http://mirrormyster ies.today. com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Don, and youn Subject: Hi! To: MosaicDS Date: Tuesday, May 26, 2009, 5:38 PM Hello everyone! I am really excited to have found this group! My hubby, Don, and I are in the process of adopting a 5 month old beauty of a girl named Remington. Remington was diagnosed with MDS at birth. As of now her precentage is around 7%. After a recent visit witht he cardiologists at CCHMC, we have learned that Remi's heart murmur is gone and the hole in her heart has closed up! Yay! We have an appointment next week with a GI doc about her stomach reflux. We are thinking she might have to have a scope done to check everything out. Other than the gastro issues, Remington is completely on target with her age but we have decided to go ahead and be proactive and we will have a developmental interventionist come in from First Steps. It can't hurt! We absloutely love having her and she is such a joy in our lives. We live in Erlanger, KY and would love to connect with others in the NKY region and in Cincinnati! Margroum mom to Remington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Don, and youn Subject: Hi! To: MosaicDS Date: Tuesday, May 26, 2009, 5:38 PM Hello everyone! I am really excited to have found this group! My hubby, Don, and I are in the process of adopting a 5 month old beauty of a girl named Remington. Remington was diagnosed with MDS at birth. As of now her precentage is around 7%. After a recent visit witht he cardiologists at CCHMC, we have learned that Remi's heart murmur is gone and the hole in her heart has closed up! Yay! We have an appointment next week with a GI doc about her stomach reflux. We are thinking she might have to have a scope done to check everything out. Other than the gastro issues, Remington is completely on target with her age but we have decided to go ahead and be proactive and we will have a developmental interventionist come in from First Steps. It can't hurt! We absloutely love having her and she is such a joy in our lives. We live in Erlanger, KY and would love to connect with others in the NKY region and in Cincinnati! Margroum mom to Remington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Don, and young Remi: First, I'd like to apologize for the half-baked email that shot forth from my laptop. Sometimes it has a mind of it's own. I just wanted to take a moment and welcome you all. And congrats on your decision to adopt. My wife and I are starting the process and hope to have a new addition by this time next year. We have one little guy with MDS, and we are looking to adopt a second child with Ds. We like the little something extra.... So welcome. Mike, Carie and Mr. Burgess the Younger Subject: Hi! To: MosaicDS Date: Tuesday, May 26, 2009, 5:38 PM Hello everyone! I am really excited to have found this group! My hubby, Don, and I are in the process of adopting a 5 month old beauty of a girl named Remington. Remington was diagnosed with MDS at birth. As of now her precentage is around 7%. After a recent visit witht he cardiologists at CCHMC, we have learned that Remi's heart murmur is gone and the hole in her heart has closed up! Yay! We have an appointment next week with a GI doc about her stomach reflux. We are thinking she might have to have a scope done to check everything out. Other than the gastro issues, Remington is completely on target with her age but we have decided to go ahead and be proactive and we will have a developmental interventionist come in from First Steps. It can't hurt! We absloutely love having her and she is such a joy in our lives. We live in Erlanger, KY and would love to connect with others in the NKY region and in Cincinnati! Margroum mom to Remington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 It is an INCREDIBLY small world! We are practically neighbors! I live in the Florence/Independence area and teach at Simon Kenton High School! (My neighborhood is that really strange one where we actually live " in " Independence, but have a Florence address!) If you'd like to private e-mail me, you may do so at either cynthia.jones@... or crickett@... A. Special Educator Simon Kenton HS 11132 Madison Pk. Independence, KY 41051 (859)960-0348 cynthia.jones@... ________________________________ From: MosaicDS on behalf of and Don Margroum Sent: Tue 5/26/2009 6:38 PM To: MosaicDS Subject: Hi! Hello everyone! I am really excited to have found this group! My hubby, Don, and I are in the process of adopting a 5 month old beauty of a girl named Remington. Remington was diagnosed with MDS at birth. As of now her precentage is around 7%. After a recent visit witht he cardiologists at CCHMC, we have learned that Remi's heart murmur is gone and the hole in her heart has closed up! Yay! We have an appointment next week with a GI doc about her stomach reflux. We are thinking she might have to have a scope done to check everything out. Other than the gastro issues, Remington is completely on target with her age but we have decided to go ahead and be proactive and we will have a developmental interventionist come in from First Steps. It can't hurt! We absloutely love having her and she is such a joy in our lives. We live in Erlanger, KY and would love to connect with others in the NKY region and in Cincinnati! Margroum mom to Remington Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2009 Report Share Posted May 27, 2009 Congrats on the new additions to your family. I am sure she will be just fine. I think you are right to get early intervention. I personally feel that early intervention is great for all children. Nothing they do will hurt development it will only enhance it. Sue ________________________________ To: MosaicDS Sent: Tuesday, May 26, 2009 6:38:47 PM Subject: Hi! Hello everyone! I am really excited to have found this group! My hubby, Don, and I are in the process of adopting a 5 month old beauty of a girl named Remington. Remington was diagnosed with MDS at birth. As of now her precentage is around 7%. After a recent visit witht he cardiologists at CCHMC, we have learned that Remi's heart murmur is gone and the hole in her heart has closed up! Yay! We have an appointment next week with a GI doc about her stomach reflux. We are thinking she might have to have a scope done to check everything out. Other than the gastro issues, Remington is completely on target with her age but we have decided to go ahead and be proactive and we will have a developmental interventionist come in from First Steps. It can't hurt! We absloutely love having her and she is such a joy in our lives. We live in Erlanger, KY and would love to connect with others in the NKY region and in Cincinnati! Margroum mom to Remington Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.