Guest guest Posted April 5, 2007 Report Share Posted April 5, 2007 Chiara International Mosaic Down Syndrome Association provides a service to its families called Family Connect. In our database, we do have a family who lives in Puerto Rico not far from you. I do not have their email address, but do have a telephone number. If you or the family is interested in connecting with this other family, just let me know and I will send the information to you. Kristy chiara merino wrote: Hi Kristy, We live in San , Puerto Rico. Of course I'll tell the parents about IMDSA--- I will tell the whole family José Ignacio was born this past Monday (2/april) at the Auxilio Mutuo Hospital, which is one of the best hospitals in the island. The prenatal tests did not show incidence of DS so we were surprised after he was born and they told us. He is a beautiful child... we had a hard time believing it. Yesterday, with the daily blood tests they are giving him, he was diagnosed with some sort of infection (it takes 2-3 days to find out what kind). He is currently in the Pediatric ICU, possibly for 7-10 days. This is very hard for his parents, as you can imagine. Thankfully, he has had no heart problems diagnosed. He does have very sensitive skin--- what we thought was a result of him scraping his nails turns out to be very dry skin which breaks easily and bleeds a little. He also has a case of hypoglicemia and slight jaundice, which they will treat with phototherapy. His mother is due out of the hospital tomorrow. She continues to give him breast milk and the doctors have suggested a mix of formula with breast milk until the mother produces more milk. She is not giving up, which is good. Thanks for the letter and the support. We will definitely keep in touch. I have ordered two books on DS: A Parent's Guide to Down Syndrome : Toward a Brighter Future, Revised Edition By: Siegfried M. Pueschel Babies With Down Syndrome: A New Parent's Guide (The Special-Needs Collection) By: Stray-Gundersen Be well, Chiara Merino > > Welcome! > Congratulations on your new Godchild! Where do you live? Please also tell > 's parents about IMDSA. We will be happy to provide support to the whole > family. > > Tell us more about . Is he home from the hospital? Does he have any > medical problems? > I look forward to hearing more about you and ! > Kristy Colvin > IMDSA President > Mom to Arron 25, 22, Tim 20 MDS, Stevan 19, and Garrett 10 > SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE > www.imdsa.com > > mosaicdownsyndrome <mosaicdownsyndrome@...<mosaicdownsyndrome%40yahoo.com>> > wrote: > Hi Everyone > We have a new member! Here is what she had to say..... > > Hello, > > My godchild José Ignacio was born a couple of days ago with Mosaic DS > and I wish to join the group in order to learn more about it. > > Welcome to our family! I am so glad you have joined us! Please tell us > all about you and your family! Feel free to ask any questions you have > here. We will all be happy to share our experiences with you. > > Twomey > IMDSA Secretary > Mom to 9mds and 7 > www.imdsa.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2007 Report Share Posted April 5, 2007 Hi Kristy, That would be great. I don't think we would call them know because it has only been three days since the diagnostic and everyone is still shaky but I would really appreciate it for future reference. Chiara > > Chiara > International Mosaic Down Syndrome Association provides a service to its > families called Family Connect. In our database, we do have a family who > lives in Puerto Rico not far from you. I do not have their email address, > but do have a telephone number. If you or the family is interested in > connecting with this other family, just let me know and I will send the > information to you. > Kristy > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com>> wrote: > Hi Kristy, > > We live in San , Puerto Rico. Of course I'll tell the parents about > IMDSA--- I will tell the whole family > > José Ignacio was born this past Monday (2/april) at the Auxilio Mutuo > Hospital, which is one of the best hospitals in the island. The prenatal > tests did not show incidence of DS so we were surprised after he was born > and they told us. He is a beautiful child... we had a hard time believing > it. > > Yesterday, with the daily blood tests they are giving him, he was > diagnosed > with some sort of infection (it takes 2-3 days to find out what kind). He > is > currently in the Pediatric ICU, possibly for 7-10 days. This is very hard > for his parents, as you can imagine. > > Thankfully, he has had no heart problems diagnosed. He does have very > sensitive skin--- what we thought was a result of him scraping his nails > turns out to be very dry skin which breaks easily and bleeds a little. He > also has a case of hypoglicemia and slight jaundice, which they will treat > with phototherapy. > > His mother is due out of the hospital tomorrow. She continues to give him > breast milk and the doctors have suggested a mix of formula with breast > milk > until the mother produces more milk. She is not giving up, which is good. > > Thanks for the letter and the support. We will definitely keep in touch. I > have ordered two books on DS: > > A Parent's Guide to Down Syndrome : Toward a Brighter Future, Revised > Edition > By: Siegfried M. Pueschel > > Babies With Down Syndrome: A New Parent's Guide (The Special-Needs > Collection) > By: Stray-Gundersen > > Be well, > > Chiara Merino > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com>> > wrote: > > > > Welcome! > > Congratulations on your new Godchild! Where do you live? Please also > tell > > 's parents about IMDSA. We will be happy to provide support to the > whole > > family. > > > > Tell us more about . Is he home from the hospital? Does he have any > > medical problems? > > I look forward to hearing more about you and ! > > Kristy Colvin > > IMDSA President > > Mom to Arron 25, 22, Tim 20 MDS, Stevan 19, and Garrett 10 > > SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE > > www.imdsa.com > > > > mosaicdownsyndrome <mosaicdownsyndrome@...<mosaicdownsyndrome%40yahoo.com> > <mosaicdownsyndrome%40yahoo.com>> > > wrote: > > Hi Everyone > > We have a new member! Here is what she had to say..... > > > > Hello, > > > > My godchild José Ignacio was born a couple of days ago with Mosaic DS > > and I wish to join the group in order to learn more about it. > > > > Welcome to our family! I am so glad you have joined us! Please tell us > > all about you and your family! Feel free to ask any questions you have > > here. We will all be happy to share our experiences with you. > > > > Twomey > > IMDSA Secretary > > Mom to 9mds and 7 > > www.imdsa.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 Hi again, I've been thinking of starting a blog for our family with mosaic DS information so that everyone can read and learn about José Ignacio's condition in a centralized and educated way. If you happen to know of any literature in Spanish on the subject please send it my way. Of course, IMDSA will be our top link Thanks again, Chiara > > Chiara > International Mosaic Down Syndrome Association provides a service to its > families called Family Connect. In our database, we do have a family who > lives in Puerto Rico not far from you. I do not have their email address, > but do have a telephone number. If you or the family is interested in > connecting with this other family, just let me know and I will send the > information to you. > Kristy > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com>> wrote: > Hi Kristy, > > We live in San , Puerto Rico. Of course I'll tell the parents about > IMDSA--- I will tell the whole family > > José Ignacio was born this past Monday (2/april) at the Auxilio Mutuo > Hospital, which is one of the best hospitals in the island. The prenatal > tests did not show incidence of DS so we were surprised after he was born > and they told us. He is a beautiful child... we had a hard time believing > it. > > Yesterday, with the daily blood tests they are giving him, he was > diagnosed > with some sort of infection (it takes 2-3 days to find out what kind). He > is > currently in the Pediatric ICU, possibly for 7-10 days. This is very hard > for his parents, as you can imagine. > > Thankfully, he has had no heart problems diagnosed. He does have very > sensitive skin--- what we thought was a result of him scraping his nails > turns out to be very dry skin which breaks easily and bleeds a little. He > also has a case of hypoglicemia and slight jaundice, which they will treat > with phototherapy. > > His mother is due out of the hospital tomorrow. She continues to give him > breast milk and the doctors have suggested a mix of formula with breast > milk > until the mother produces more milk. She is not giving up, which is good. > > Thanks for the letter and the support. We will definitely keep in touch. I > have ordered two books on DS: > > A Parent's Guide to Down Syndrome : Toward a Brighter Future, Revised > Edition > By: Siegfried M. Pueschel > > Babies With Down Syndrome: A New Parent's Guide (The Special-Needs > Collection) > By: Stray-Gundersen > > Be well, > > Chiara Merino > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com>> > wrote: > > > > Welcome! > > Congratulations on your new Godchild! Where do you live? Please also > tell > > 's parents about IMDSA. We will be happy to provide support to the > whole > > family. > > > > Tell us more about . Is he home from the hospital? Does he have any > > medical problems? > > I look forward to hearing more about you and ! > > Kristy Colvin > > IMDSA President > > Mom to Arron 25, 22, Tim 20 MDS, Stevan 19, and Garrett 10 > > SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE > > www.imdsa.com > > > > mosaicdownsyndrome <mosaicdownsyndrome@...<mosaicdownsyndrome%40yahoo.com> > <mosaicdownsyndrome%40yahoo.com>> > > wrote: > > Hi Everyone > > We have a new member! Here is what she had to say..... > > > > Hello, > > > > My godchild José Ignacio was born a couple of days ago with Mosaic DS > > and I wish to join the group in order to learn more about it. > > > > Welcome to our family! I am so glad you have joined us! Please tell us > > all about you and your family! Feel free to ask any questions you have > > here. We will all be happy to share our experiences with you. > > > > Twomey > > IMDSA Secretary > > Mom to 9mds and 7 > > www.imdsa.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 Are you wanting literature in Spanish on MDS? This is something we are working on right now. We are trying to get everything translated into Spanish. Unfortunately, it is a slow process! So...if you or anyone else is interested in helping us to translate our material into Spanish (or other languages) please let me know! I don't think you will find any information on MDS in spanish, because IMDSA is the only organization devoted to MDS, so we are basically the ones responsible for writting everything in the world! You may find some research papers in spanish by doing a search online, but usually what you find is just one small paper on one individual case. We have just updated our website (Last night!) So, if you visit it you can find lots of new information on MDS and IMDSA. www.imdsa.com If I can help you with any basic information that you would like to add to your blog, please let me know. Kristy chiara merino wrote: Hi again, I've been thinking of starting a blog for our family with mosaic DS information so that everyone can read and learn about José Ignacio's condition in a centralized and educated way. If you happen to know of any literature in Spanish on the subject please send it my way. Of course, IMDSA will be our top link Thanks again, Chiara > > Chiara > International Mosaic Down Syndrome Association provides a service to its > families called Family Connect. In our database, we do have a family who > lives in Puerto Rico not far from you. I do not have their email address, > but do have a telephone number. If you or the family is interested in > connecting with this other family, just let me know and I will send the > information to you. > Kristy > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com>> wrote: > Hi Kristy, > > We live in San , Puerto Rico. Of course I'll tell the parents about > IMDSA--- I will tell the whole family > > José Ignacio was born this past Monday (2/april) at the Auxilio Mutuo > Hospital, which is one of the best hospitals in the island. The prenatal > tests did not show incidence of DS so we were surprised after he was born > and they told us. He is a beautiful child... we had a hard time believing > it. > > Yesterday, with the daily blood tests they are giving him, he was > diagnosed > with some sort of infection (it takes 2-3 days to find out what kind). He > is > currently in the Pediatric ICU, possibly for 7-10 days. This is very hard > for his parents, as you can imagine. > > Thankfully, he has had no heart problems diagnosed. He does have very > sensitive skin--- what we thought was a result of him scraping his nails > turns out to be very dry skin which breaks easily and bleeds a little. He > also has a case of hypoglicemia and slight jaundice, which they will treat > with phototherapy. > > His mother is due out of the hospital tomorrow. She continues to give him > breast milk and the doctors have suggested a mix of formula with breast > milk > until the mother produces more milk. She is not giving up, which is good. > > Thanks for the letter and the support. We will definitely keep in touch. I > have ordered two books on DS: > > A Parent's Guide to Down Syndrome : Toward a Brighter Future, Revised > Edition > By: Siegfried M. Pueschel > > Babies With Down Syndrome: A New Parent's Guide (The Special-Needs > Collection) > By: Stray-Gundersen > > Be well, > > Chiara Merino > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com>> > wrote: > > > > Welcome! > > Congratulations on your new Godchild! Where do you live? Please also > tell > > 's parents about IMDSA. We will be happy to provide support to the > whole > > family. > > > > Tell us more about . Is he home from the hospital? Does he have any > > medical problems? > > I look forward to hearing more about you and ! > > Kristy Colvin > > IMDSA President > > Mom to Arron 25, 22, Tim 20 MDS, Stevan 19, and Garrett 10 > > SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE > > www.imdsa.com > > > > mosaicdownsyndrome <mosaicdownsyndrome@...<mosaicdownsyndrome%40yahoo.com> > <mosaicdownsyndrome%40yahoo.com>> > > wrote: > > Hi Everyone > > We have a new member! Here is what she had to say..... > > > > Hello, > > > > My godchild José Ignacio was born a couple of days ago with Mosaic DS > > and I wish to join the group in order to learn more about it. > > > > Welcome to our family! I am so glad you have joined us! Please tell us > > all about you and your family! Feel free to ask any questions you have > > here. We will all be happy to share our experiences with you. > > > > Twomey > > IMDSA Secretary > > Mom to 9mds and 7 > > www.imdsa.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2007 Report Share Posted April 8, 2007 Yes, please send the info my way and I will translate it and send it back to IMDSA. I think it would be important to get the basic information translated first. I do freelance translation, mostly for environmental organizations, cultural institutions and the like, but I could definitely work on this and offer it to IMSA as a happy donation Saludos, Chiara > > Are you wanting literature in Spanish on MDS? This is something we are > working on right now. We are trying to get everything translated into > Spanish. Unfortunately, it is a slow process! So...if you or anyone else is > interested in helping us to translate our material into Spanish (or other > languages) please let me know! > I don't think you will find any information on MDS in spanish, because > IMDSA is the only organization devoted to MDS, so we are basically the ones > responsible for writting everything in the world! You may find some research > papers in spanish by doing a search online, but usually what you find is > just one small paper on one individual case. > > We have just updated our website (Last night!) So, if you visit it you can > find lots of new information on MDS and IMDSA. www.imdsa.com > If I can help you with any basic information that you would like to add to > your blog, please let me know. > Kristy > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com>> wrote: > > Hi again, > > I've been thinking of starting a blog for our family with mosaic DS > information so that everyone can read and learn about José Ignacio's > condition in a centralized and educated way. > > If you happen to know of any literature in Spanish on the subject please > send it my way. > > Of course, IMDSA will be our top link > > Thanks again, > > Chiara > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com>> > wrote: > > > > Chiara > > International Mosaic Down Syndrome Association provides a service to its > > families called Family Connect. In our database, we do have a family who > > lives in Puerto Rico not far from you. I do not have their email > address, > > but do have a telephone number. If you or the family is interested in > > connecting with this other family, just let me know and I will send the > > information to you. > > Kristy > > > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com> < > chiara.merino%40gmail.com>> wrote: > > Hi Kristy, > > > > We live in San , Puerto Rico. Of course I'll tell the parents about > > IMDSA--- I will tell the whole family > > > > José Ignacio was born this past Monday (2/april) at the Auxilio Mutuo > > Hospital, which is one of the best hospitals in the island. The prenatal > > tests did not show incidence of DS so we were surprised after he was > born > > and they told us. He is a beautiful child... we had a hard time > believing > > it. > > > > Yesterday, with the daily blood tests they are giving him, he was > > diagnosed > > with some sort of infection (it takes 2-3 days to find out what kind). > He > > is > > currently in the Pediatric ICU, possibly for 7-10 days. This is very > hard > > for his parents, as you can imagine. > > > > Thankfully, he has had no heart problems diagnosed. He does have very > > sensitive skin--- what we thought was a result of him scraping his nails > > turns out to be very dry skin which breaks easily and bleeds a little. > He > > also has a case of hypoglicemia and slight jaundice, which they will > treat > > with phototherapy. > > > > His mother is due out of the hospital tomorrow. She continues to give > him > > breast milk and the doctors have suggested a mix of formula with breast > > milk > > until the mother produces more milk. She is not giving up, which is > good. > > > > Thanks for the letter and the support. We will definitely keep in touch. > I > > have ordered two books on DS: > > > > A Parent's Guide to Down Syndrome : Toward a Brighter Future, Revised > > Edition > > By: Siegfried M. Pueschel > > > > Babies With Down Syndrome: A New Parent's Guide (The Special-Needs > > Collection) > > By: Stray-Gundersen > > > > Be well, > > > > Chiara Merino > > > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com> > <imdsapresident%40imdsa.com>> > > wrote: > > > > > > Welcome! > > > Congratulations on your new Godchild! Where do you live? Please also > > tell > > > 's parents about IMDSA. We will be happy to provide support to the > > whole > > > family. > > > > > > Tell us more about . Is he home from the hospital? Does he have > any > > > medical problems? > > > I look forward to hearing more about you and ! > > > Kristy Colvin > > > IMDSA President > > > Mom to Arron 25, 22, Tim 20 MDS, Stevan 19, and Garrett 10 > > > SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE > > > www.imdsa.com > > > > > > mosaicdownsyndrome <mosaicdownsyndrome@...<mosaicdownsyndrome%40yahoo.com> > <mosaicdownsyndrome%40yahoo.com> > > <mosaicdownsyndrome%40yahoo.com>> > > > wrote: > > > Hi Everyone > > > We have a new member! Here is what she had to say..... > > > > > > Hello, > > > > > > My godchild José Ignacio was born a couple of days ago with Mosaic DS > > > and I wish to join the group in order to learn more about it. > > > > > > Welcome to our family! I am so glad you have joined us! Please tell us > > > all about you and your family! Feel free to ask any questions you have > > > here. We will all be happy to share our experiences with you. > > > > > > Twomey > > > IMDSA Secretary > > > Mom to 9mds and 7 > > > www.imdsa.com > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2007 Report Share Posted April 8, 2007 Chiara That is wonderful! It is amazing the people we meet and the skills they have that can help our organization! So many people do not think they have something they can offer to IMDSA, but each skill that every person has can be very valuable to our organization! The first thing we need translated is our Brochure. You can access this easiest by going to http://www.imdsa.com/IMDSA_Brochure.pdf Once you are able to get that done, we have several pages in our information packet http://www.imdsa.com/info.htm that we would like translated as well. We would like to have our complete information packet in Spanish to help all of our Spanish speaking families. Thank you so much for donating your time and services! You will make such a huge difference in so many lives throughout the world! Kristy chiara merino wrote: Yes, please send the info my way and I will translate it and send it back to IMDSA. I think it would be important to get the basic information translated first. I do freelance translation, mostly for environmental organizations, cultural institutions and the like, but I could definitely work on this and offer it to IMSA as a happy donation Saludos, Chiara > > Are you wanting literature in Spanish on MDS? This is something we are > working on right now. We are trying to get everything translated into > Spanish. Unfortunately, it is a slow process! So...if you or anyone else is > interested in helping us to translate our material into Spanish (or other > languages) please let me know! > I don't think you will find any information on MDS in spanish, because > IMDSA is the only organization devoted to MDS, so we are basically the ones > responsible for writting everything in the world! You may find some research > papers in spanish by doing a search online, but usually what you find is > just one small paper on one individual case. > > We have just updated our website (Last night!) So, if you visit it you can > find lots of new information on MDS and IMDSA. www.imdsa.com > If I can help you with any basic information that you would like to add to > your blog, please let me know. > Kristy > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com>> wrote: > > Hi again, > > I've been thinking of starting a blog for our family with mosaic DS > information so that everyone can read and learn about José Ignacio's > condition in a centralized and educated way. > > If you happen to know of any literature in Spanish on the subject please > send it my way. > > Of course, IMDSA will be our top link > > Thanks again, > > Chiara > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com>> > wrote: > > > > Chiara > > International Mosaic Down Syndrome Association provides a service to its > > families called Family Connect. In our database, we do have a family who > > lives in Puerto Rico not far from you. I do not have their email > address, > > but do have a telephone number. If you or the family is interested in > > connecting with this other family, just let me know and I will send the > > information to you. > > Kristy > > > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com> < > chiara.merino%40gmail.com>> wrote: > > Hi Kristy, > > > > We live in San , Puerto Rico. Of course I'll tell the parents about > > IMDSA--- I will tell the whole family > > > > José Ignacio was born this past Monday (2/april) at the Auxilio Mutuo > > Hospital, which is one of the best hospitals in the island. The prenatal > > tests did not show incidence of DS so we were surprised after he was > born > > and they told us. He is a beautiful child... we had a hard time > believing > > it. > > > > Yesterday, with the daily blood tests they are giving him, he was > > diagnosed > > with some sort of infection (it takes 2-3 days to find out what kind). > He > > is > > currently in the Pediatric ICU, possibly for 7-10 days. This is very > hard > > for his parents, as you can imagine. > > > > Thankfully, he has had no heart problems diagnosed. He does have very > > sensitive skin--- what we thought was a result of him scraping his nails > > turns out to be very dry skin which breaks easily and bleeds a little. > He > > also has a case of hypoglicemia and slight jaundice, which they will > treat > > with phototherapy. > > > > His mother is due out of the hospital tomorrow. She continues to give > him > > breast milk and the doctors have suggested a mix of formula with breast > > milk > > until the mother produces more milk. She is not giving up, which is > good. > > > > Thanks for the letter and the support. We will definitely keep in touch. > I > > have ordered two books on DS: > > > > A Parent's Guide to Down Syndrome : Toward a Brighter Future, Revised > > Edition > > By: Siegfried M. Pueschel > > > > Babies With Down Syndrome: A New Parent's Guide (The Special-Needs > > Collection) > > By: Stray-Gundersen > > > > Be well, > > > > Chiara Merino > > > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com> > <imdsapresident%40imdsa.com>> > > wrote: > > > > > > Welcome! > > > Congratulations on your new Godchild! Where do you live? Please also > > tell > > > 's parents about IMDSA. We will be happy to provide support to the > > whole > > > family. > > > > > > Tell us more about . Is he home from the hospital? Does he have > any > > > medical problems? > > > I look forward to hearing more about you and ! > > > Kristy Colvin > > > IMDSA President > > > Mom to Arron 25, 22, Tim 20 MDS, Stevan 19, and Garrett 10 > > > SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE > > > www.imdsa.com > > > > > > mosaicdownsyndrome <mosaicdownsyndrome@...<mosaicdownsyndrome%40yahoo.com> > <mosaicdownsyndrome%40yahoo.com> > > <mosaicdownsyndrome%40yahoo.com>> > > > wrote: > > > Hi Everyone > > > We have a new member! Here is what she had to say..... > > > > > > Hello, > > > > > > My godchild José Ignacio was born a couple of days ago with Mosaic DS > > > and I wish to join the group in order to learn more about it. > > > > > > Welcome to our family! I am so glad you have joined us! Please tell us > > > all about you and your family! Feel free to ask any questions you have > > > here. We will all be happy to share our experiences with you. > > > > > > Twomey > > > IMDSA Secretary > > > Mom to 9mds and 7 > > > www.imdsa.com > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 I'm on it, Kristy Cheers, Chiara > > Chiara > That is wonderful! It is amazing the people we meet and the skills they > have that can help our organization! So many people do not think they have > something they can offer to IMDSA, but each skill that every person has can > be very valuable to our organization! > > The first thing we need translated is our Brochure. You can access this > easiest by going to http://www.imdsa.com/IMDSA_Brochure.pdf > > Once you are able to get that done, we have several pages in our > information packet http://www.imdsa.com/info.htm that we would like > translated as well. We would like to have our complete information packet in > Spanish to help all of our Spanish speaking families. > > Thank you so much for donating your time and services! You will make such > a huge difference in so many lives throughout the world! > > > Kristy > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com>> wrote: > Yes, please send the info my way and I will translate it and send it back > to > IMDSA. I think it would be important to get the basic information > translated > first. I do freelance translation, mostly for environmental organizations, > cultural institutions and the like, but I could definitely work on this > and > offer it to IMSA as a happy donation > > Saludos, > > Chiara > > On 4/6/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com>> > wrote: > > > > Are you wanting literature in Spanish on MDS? This is something we are > > working on right now. We are trying to get everything translated into > > Spanish. Unfortunately, it is a slow process! So...if you or anyone else > is > > interested in helping us to translate our material into Spanish (or > other > > languages) please let me know! > > I don't think you will find any information on MDS in spanish, because > > IMDSA is the only organization devoted to MDS, so we are basically the > ones > > responsible for writting everything in the world! You may find some > research > > papers in spanish by doing a search online, but usually what you find is > > just one small paper on one individual case. > > > > We have just updated our website (Last night!) So, if you visit it you > can > > find lots of new information on MDS and IMDSA. www.imdsa.com > > If I can help you with any basic information that you would like to add > to > > your blog, please let me know. > > Kristy > > > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com> < > chiara.merino%40gmail.com>> wrote: > > > > Hi again, > > > > I've been thinking of starting a blog for our family with mosaic DS > > information so that everyone can read and learn about José Ignacio's > > condition in a centralized and educated way. > > > > If you happen to know of any literature in Spanish on the subject please > > send it my way. > > > > Of course, IMDSA will be our top link > > > > Thanks again, > > > > Chiara > > > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com> > <imdsapresident%40imdsa.com>> > > wrote: > > > > > > Chiara > > > International Mosaic Down Syndrome Association provides a service to > its > > > families called Family Connect. In our database, we do have a family > who > > > lives in Puerto Rico not far from you. I do not have their email > > address, > > > but do have a telephone number. If you or the family is interested in > > > connecting with this other family, just let me know and I will send > the > > > information to you. > > > Kristy > > > > > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com> < > chiara.merino%40gmail.com> < > > chiara.merino%40gmail.com>> wrote: > > > Hi Kristy, > > > > > > We live in San , Puerto Rico. Of course I'll tell the parents > about > > > IMDSA--- I will tell the whole family > > > > > > José Ignacio was born this past Monday (2/april) at the Auxilio Mutuo > > > Hospital, which is one of the best hospitals in the island. The > prenatal > > > tests did not show incidence of DS so we were surprised after he was > > born > > > and they told us. He is a beautiful child... we had a hard time > > believing > > > it. > > > > > > Yesterday, with the daily blood tests they are giving him, he was > > > diagnosed > > > with some sort of infection (it takes 2-3 days to find out what kind). > > He > > > is > > > currently in the Pediatric ICU, possibly for 7-10 days. This is very > > hard > > > for his parents, as you can imagine. > > > > > > Thankfully, he has had no heart problems diagnosed. He does have very > > > sensitive skin--- what we thought was a result of him scraping his > nails > > > turns out to be very dry skin which breaks easily and bleeds a little. > > He > > > also has a case of hypoglicemia and slight jaundice, which they will > > treat > > > with phototherapy. > > > > > > His mother is due out of the hospital tomorrow. She continues to give > > him > > > breast milk and the doctors have suggested a mix of formula with > breast > > > milk > > > until the mother produces more milk. She is not giving up, which is > > good. > > > > > > Thanks for the letter and the support. We will definitely keep in > touch. > > I > > > have ordered two books on DS: > > > > > > A Parent's Guide to Down Syndrome : Toward a Brighter Future, Revised > > > Edition > > > By: Siegfried M. Pueschel > > > > > > Babies With Down Syndrome: A New Parent's Guide (The Special-Needs > > > Collection) > > > By: Stray-Gundersen > > > > > > Be well, > > > > > > Chiara Merino > > > > > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com> > <imdsapresident%40imdsa.com> > > <imdsapresident%40imdsa.com>> > > > wrote: > > > > > > > > Welcome! > > > > Congratulations on your new Godchild! Where do you live? Please also > > > tell > > > > 's parents about IMDSA. We will be happy to provide support to > the > > > whole > > > > family. > > > > > > > > Tell us more about . Is he home from the hospital? Does he have > > any > > > > medical problems? > > > > I look forward to hearing more about you and ! > > > > Kristy Colvin > > > > IMDSA President > > > > Mom to Arron 25, 22, Tim 20 MDS, Stevan 19, and Garrett 10 > > > > SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE > > > > www.imdsa.com > > > > > > > > mosaicdownsyndrome <mosaicdownsyndrome@...<mosaicdownsyndrome%40yahoo.com> > <mosaicdownsyndrome%40yahoo.com> > > <mosaicdownsyndrome%40yahoo.com> > > > <mosaicdownsyndrome%40yahoo.com>> > > > > wrote: > > > > Hi Everyone > > > > We have a new member! Here is what she had to say..... > > > > > > > > Hello, > > > > > > > > My godchild José Ignacio was born a couple of days ago with Mosaic > DS > > > > and I wish to join the group in order to learn more about it. > > > > > > > > Welcome to our family! I am so glad you have joined us! Please tell > us > > > > all about you and your family! Feel free to ask any questions you > have > > > > here. We will all be happy to share our experiences with you. > > > > > > > > Twomey > > > > IMDSA Secretary > > > > Mom to 9mds and 7 > > > > www.imdsa.com > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 Kristy, I'm sending the translated brochure. I will work on the rest this week. Cheers, Chiara > > I'm on it, Kristy > Cheers, > Chiara > > > > > > > Chiara > > That is wonderful! It is amazing the people we meet and the skills they > > have that can help our organization! So many people do not think they have > > something they can offer to IMDSA, but each skill that every person has can > > be very valuable to our organization! > > > > The first thing we need translated is our Brochure. You can access this > > easiest by going to http://www.imdsa.com/IMDSA_Brochure.pdf > > > > Once you are able to get that done, we have several pages in our > > information packet http://www.imdsa.com/info.htm that we would like > > translated as well. We would like to have our complete information packet in > > Spanish to help all of our Spanish speaking families. > > > > Thank you so much for donating your time and services! You will make > > such a huge difference in so many lives throughout the world! > > > > > > Kristy > > > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com>> > > wrote: > > Yes, please send the info my way and I will translate it and send it > > back to > > IMDSA. I think it would be important to get the basic information > > translated > > first. I do freelance translation, mostly for environmental > > organizations, > > cultural institutions and the like, but I could definitely work on this > > and > > offer it to IMSA as a happy donation > > > > Saludos, > > > > Chiara > > > > On 4/6/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com>> > > wrote: > > > > > > Are you wanting literature in Spanish on MDS? This is something we are > > > working on right now. We are trying to get everything translated into > > > Spanish. Unfortunately, it is a slow process! So...if you or anyone > > else is > > > interested in helping us to translate our material into Spanish (or > > other > > > languages) please let me know! > > > I don't think you will find any information on MDS in spanish, because > > > IMDSA is the only organization devoted to MDS, so we are basically the > > ones > > > responsible for writting everything in the world! You may find some > > research > > > papers in spanish by doing a search online, but usually what you find > > is > > > just one small paper on one individual case. > > > > > > We have just updated our website (Last night!) So, if you visit it you > > can > > > find lots of new information on MDS and IMDSA. www.imdsa.com > > > If I can help you with any basic information that you would like to > > add to > > > your blog, please let me know. > > > Kristy > > > > > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com> < > > chiara.merino% 40gmail.com>> wrote: > > > > > > Hi again, > > > > > > I've been thinking of starting a blog for our family with mosaic DS > > > information so that everyone can read and learn about José Ignacio's > > > condition in a centralized and educated way. > > > > > > If you happen to know of any literature in Spanish on the subject > > please > > > send it my way. > > > > > > Of course, IMDSA will be our top link > > > > > > Thanks again, > > > > > > Chiara > > > > > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com> > > <imdsapresident% 40imdsa.com>> > > > wrote: > > > > > > > > Chiara > > > > International Mosaic Down Syndrome Association provides a service to > > its > > > > families called Family Connect. In our database, we do have a family > > who > > > > lives in Puerto Rico not far from you. I do not have their email > > > address, > > > > but do have a telephone number. If you or the family is interested > > in > > > > connecting with this other family, just let me know and I will send > > the > > > > information to you. > > > > Kristy > > > > > > > > chiara merino <chiara.merino@... <chiara.merino%40gmail.com> < > > chiara.merino% 40gmail.com> < > > > chiara.merino%40gmail.com>> wrote: > > > > Hi Kristy, > > > > > > > > We live in San , Puerto Rico. Of course I'll tell the parents > > about > > > > IMDSA--- I will tell the whole family > > > > > > > > José Ignacio was born this past Monday (2/april) at the Auxilio > > Mutuo > > > > Hospital, which is one of the best hospitals in the island. The > > prenatal > > > > tests did not show incidence of DS so we were surprised after he was > > > born > > > > and they told us. He is a beautiful child... we had a hard time > > > believing > > > > it. > > > > > > > > Yesterday, with the daily blood tests they are giving him, he was > > > > diagnosed > > > > with some sort of infection (it takes 2-3 days to find out what > > kind). > > > He > > > > is > > > > currently in the Pediatric ICU, possibly for 7-10 days. This is very > > > hard > > > > for his parents, as you can imagine. > > > > > > > > Thankfully, he has had no heart problems diagnosed. He does have > > very > > > > sensitive skin--- what we thought was a result of him scraping his > > nails > > > > turns out to be very dry skin which breaks easily and bleeds a > > little. > > > He > > > > also has a case of hypoglicemia and slight jaundice, which they will > > > treat > > > > with phototherapy. > > > > > > > > His mother is due out of the hospital tomorrow. She continues to > > give > > > him > > > > breast milk and the doctors have suggested a mix of formula with > > breast > > > > milk > > > > until the mother produces more milk. She is not giving up, which is > > > good. > > > > > > > > Thanks for the letter and the support. We will definitely keep in > > touch. > > > I > > > > have ordered two books on DS: > > > > > > > > A Parent's Guide to Down Syndrome : Toward a Brighter Future, > > Revised > > > > Edition > > > > By: Siegfried M. Pueschel > > > > > > > > Babies With Down Syndrome: A New Parent's Guide (The Special-Needs > > > > Collection) > > > > By: Stray-Gundersen > > > > > > > > Be well, > > > > > > > > Chiara Merino > > > > > > > > On 4/5/07, Kristy Colvin <imdsapresident@...<imdsapresident%40imdsa.com> > > <imdsapresident% 40imdsa.com> > > > <imdsapresident%40imdsa.com>> > > > > wrote: > > > > > > > > > > Welcome! > > > > > Congratulations on your new Godchild! Where do you live? Please > > also > > > > tell > > > > > 's parents about IMDSA. We will be happy to provide support to > > the > > > > whole > > > > > family. > > > > > > > > > > Tell us more about . Is he home from the hospital? Does he > > have > > > any > > > > > medical problems? > > > > > I look forward to hearing more about you and ! > > > > > Kristy Colvin > > > > > IMDSA President > > > > > Mom to Arron 25, 22, Tim 20 MDS, Stevan 19, and Garrett 10 > > > > > SAVE THE DATE! JUNE 29-JULY 1 MDS RESEARCH & AWARENESS CONFERENCE > > > > > www.imdsa.com > > > > > > > > > > mosaicdownsyndrome <mosaicdownsyndrome@...<mosaicdownsyndrome%40yahoo.com><mosaicdownsyndrome\ %40yahoo.com> > > > > > <mosaicdownsyndrome%40yahoo.com> > > > > <mosaicdownsyndrome%40yahoo.com>> > > > > > wrote: > > > > > Hi Everyone > > > > > We have a new member! Here is what she had to say..... > > > > > > > > > > Hello, > > > > > > > > > > My godchild José Ignacio was born a couple of days ago with Mosaic > > DS > > > > > and I wish to join the group in order to learn more about it. > > > > > > > > > > Welcome to our family! I am so glad you have joined us! Please > > tell us > > > > > all about you and your family! Feel free to ask any questions you > > have > > > > > here. We will all be happy to share our experiences with you. > > > > > > > > > > Twomey > > > > > IMDSA Secretary > > > > > Mom to 9mds and 7 > > > > > www.imdsa.com > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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