Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 Hi Jen! First of all thank you all for the welcoming! Well, my name is Gaby and I am a 38 yr old second time expecting mom from SoCal. I am almost five months along my pregnancy and we started having the hints of DS since my first and second trimester tests came back abnormal for the AFP, so we decided to get the amnio done a week ago and this morning the results provided by my genetic counselor were positive for MSD. I was so tangled up in my brain trying to comprehend and understand all the info that was being provided over the phone to me, that I forgot to confirm the baby's gender. So that will have to be disclosed later on Now as anyone of you parents going on through the same situation dealing with MSD, I have a lot of questions crossing my mind right now(especially since it's the first day I know about this), and for the most I've tried to research all day long on the net, I still seem to go back and forth in my understanding about what the factual difference is between MSD and SD, EXCUSE ME for my ignorance, but I have to admit I never even heard of the different types of SD before! so I really appreciate any elightment you guys can provide me with and comments on how it has affected your baby's and family life. I feel the world weight on my shoulders right now, but am still trying to keep the faith and believe we can deal with this and be of good help for our kid. Thank you so much sincerely for everything you can bring me up to in this MSD world. Your new friend, Gaby Casario. > > Hi everyone, > > We have a new member and here is what she had to say. > > Im expecting an MSD baby in 4 months, trying to learn as much as poss > about this syndrome and how can I better help my little one. Thanks! > > > Hi, my name is and I'd like to welcome you to the group. How exciting to be expecting a baby !! What is your name and do you know if the baby is a boy or girl? What led to the diagnosis of your baby? I know you have lots of questions, as I did when my 3 yr old was born, and I still do ask questions. So feel free to ask anything you want as this is an awesome group. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 " We can not do great things only small things with great love " (Mother of Calcutta) With faith and hope we will all hardships TOGETHER Floreta Subject: Re: New Member To: MosaicDS Date: Thursday, April 8, 2010, 8:52 AM Â Hi Jen! First of all thank you all for the welcoming! Well, my name is Gaby and I am a 38 yr old second time expecting mom from SoCal. I am almost five months along my pregnancy and we started having the hints of DS since my first and second trimester tests came back abnormal for the AFP, so we decided to get the amnio done a week ago and this morning the results provided by my genetic counselor were positive for MSD. I was so tangled up in my brain trying to comprehend and understand all the info that was being provided over the phone to me, that I forgot to confirm the baby's gender. So that will have to be disclosed later on Now as anyone of you parents going on through the same situation dealing with MSD, I have a lot of questions crossing my mind right now(especially since it's the first day I know about this), and for the most I've tried to research all day long on the net, I still seem to go back and forth in my understanding about what the factual difference is between MSD and SD, EXCUSE ME for my ignorance, but I have to admit I never even heard of the different types of SD before! so I really appreciate any elightment you guys can provide me with and comments on how it has affected your baby's and family life. I feel the world weight on my shoulders right now, but am still trying to keep the faith and believe we can deal with this and be of good help for our kid. Thank you so much sincerely for everything you can bring me up to in this MSD world. Your new friend, Gaby Casario. > > Hi everyone, > > We have a new member and here is what she had to say. > > Im expecting an MSD baby in 4 months, trying to learn as much as poss > about this syndrome and how can I better help my little one. Thanks! > > > Hi, my name is and I'd like to welcome you to the group. How exciting to be expecting a baby !! What is your name and do you know if the baby is a boy or girl? What led to the diagnosis of your baby? I know you have lots of questions, as I did when my 3 yr old was born, and I still do ask questions. So feel free to ask anything you want as this is an awesome group. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2010 Report Share Posted April 8, 2010 Gaby - My name is Darlene and I have a daughter, with MDS. We did not know ahead of time, and when she was born (because I had a high triple screen) I asked does she have Down Syndrome? They (the Doctors) told me no. I said are you sure - they said yes we would know. When she was at her 4 month check up a different pediatrician saw her and said she had " Asian " eyes was her father Asian? I always thought she had beautiful eyes (exactly the same color as her fathers) but no he is not Asian. She said that 's muscle tone was low which could be a sign of DS - we would wait and see if anything would develop. I was a type A - I am not a wait and see kind of a person so I called my ped. and talked to her - I brought back in and she said she could not tell either way by looking at her, we had to do the blood work. So we did - now during the wait - my ped. was dx with breast cancer and quit. We waited 8 weeks and got a call from a total stranger telling me that yes she had MDS - could not tell me anything about it. Did not give me anywhere to turn - it was a nightmare, my perfect daughter was no longer perfect. then got very sick from a cold developing into pneumonia, ended up in the hospital with a collapsed lung and sepsis. I spent two weeks at children's (about 2 weeks after I got this horrible news). I thought, I am young my husband and I could have another girl, and this one will be perfect. It is OK if this one dies but the more I thought about it, the more I thought that was perfect - there was no guarantee that we could have another baby or that it would be a girl. And there was no way that my next baby would be as good as was, she was perfect - she was such a good, happy baby. She was extremely cuddly, and loved to be sung to, never cried, slept like a dream from the first month on. The total opposite of my son who was a NIGHTMARE as a baby, never slept, ate constantly. It was then that I decided I wanted this baby to live, I wanted my Princess to grow up and be happy, she never changed. I changed. My expectations for her had to change, but as she grows I realize my expectations for her are not that different. I want her to be happy and content. I want her to be self sufficient. I want her to go to college, maybe an adapted college - maybe not. I do not know yet. She is fully included in 4th grade now and I hope it to remain that way. I hope I helped you know what to expect from your baby - anything you would from any other baby. We have had bumps in the road, but what parent hasn't. Any questions you have - this is the place for you to ask. Darlene - Mom to (13) and (11) > > > > Hi Jen! > > First of all thank you all for the welcoming! Well, my name is Gaby and I > am a 38 yr old second time expecting mom from SoCal. I am almost five months > along my pregnancy and we started having the hints of DS since my first and > second trimester tests came back abnormal for the AFP, so we decided to get > the amnio done a week ago and this morning the results provided by my > genetic counselor were positive for MSD. I was so tangled up in my brain > trying to comprehend and understand all the info that was being provided > over the phone to me, that I forgot to confirm the baby's gender. So that > will have to be disclosed later on > > Now as anyone of you parents going on through the same situation dealing > with MSD, I have a lot of questions crossing my mind right now(especially > since it's the first day I know about this), and for the most I've tried to > research all day long on the net, I still seem to go back and forth in my > understanding about what the factual difference is between MSD and SD, > EXCUSE ME for my ignorance, but I have to admit I never even heard of the > different types of SD before! so I really appreciate any elightment you guys > can provide me with and comments on how it has affected your baby's and > family life. I feel the world weight on my shoulders right now, but am still > trying to keep the faith and believe we can deal with this and be of good > help for our kid. > > Thank you so much sincerely for everything you can bring me up to in this > MSD world. > > Your new friend, > > Gaby Casario. > > > > > > Hi everyone, > > > > We have a new member and here is what she had to say. > > > > Im expecting an MSD baby in 4 months, trying to learn as much as poss > > about this syndrome and how can I better help my little one. Thanks! > > > > > > Hi, my name is and I'd like to welcome you to the group. How > exciting to be expecting a baby !! What is your name and do you know if the > baby is a boy or girl? What led to the diagnosis of your baby? I know you > have lots of questions, as I did when my 3 yr old was born, and I still do > ask questions. So feel free to ask anything you want as this is an awesome > group. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2010 Report Share Posted April 9, 2010 Hi, Gaby. Welcome! I just wanted to respond as we also had found out about our daughter's diagnosis through the amnio. However, we hadn't done any earlier tests so when the Dr came in with our results - which we felt were more routine than something to worry about this being our 2nd child - and we'd done the amnion the first time around... Then, the Dr told us - and what a day that was! All the emotions, aside - we spent the next 72 hours surfing the net reading everything we could trying to learn what we could!!! And, as we all know - not all info on the web is accurate, to say the least! We both had heard of DS, but not really familiar with what it meant, nor had any personal experiences with anyone with the syndrome. And neither of had ever heard of MDS, obviously, as it's even more rare. So, we had a lot of " learning " to do. We did a lot of worrying before Avery's birth, but once she arrived we really " got it " that she's just another little girl. Just another perfectly wonderful, beautiful baby girl. She may have different needs than our first daughter did, but no two babies are alike, anyway. Ain't that the truth! You guys can do this and will be wonderful parents. You are already reaching out to understand and be as knowledgable and helpful to your new baby, as possible. What you will learn, as we all have is that our children with mDs teach us a lot more than we teach them! Profoundly touching and meaningful life lessons... Anyway, we are glad you found IMDS. This is a fantastic group of parents and individuals with MDS - who are very open and supportive in sharing their personal stories. Christie (mommy to Sedona 2yrs, Avery 8 mos, mDs) Re: New Member Hi Jen! First of all thank you all for the welcoming! Well, my name is Gaby and I am a 38 yr old second time expecting mom from SoCal. I am almost five months along my pregnancy and we started having the hints of DS since my first and second trimester tests came back abnormal for the AFP, so we decided to get the amnio done a week ago and this morning the results provided by my genetic counselor were positive for MSD. I was so tangled up in my brain trying to comprehend and understand all the info that was being provided over the phone to me, that I forgot to confirm the baby's gender. So that will have to be disclosed later on Now as anyone of you parents going on through the same situation dealing with MSD, I have a lot of questions crossing my mind right now(especially since it's the first day I know about this), and for the most I've tried to research all day long on the net, I still seem to go back and forth in my understanding about what the factual difference is between MSD and SD, EXCUSE ME for my ignorance, but I have to admit I never even heard of the different types of SD before! so I really appreciate any elightment you guys can provide me with and comments on how it has affected your baby's and family life. I feel the world weight on my shoulders right now, but am still trying to keep the faith and believe we can deal with this and be of good help for our kid. Thank you so much sincerely for everything you can bring me up to in this MSD world. Your new friend, Gaby Casario. > > Hi everyone, > > We have a new member and here is what she had to say. > > Im expecting an MSD baby in 4 months, trying to learn as much as poss > about this syndrome and how can I better help my little one. Thanks! > > > Hi, my name is and I'd like to welcome you to the group. How exciting to be expecting a baby !! What is your name and do you know if the baby is a boy or girl? What led to the diagnosis of your baby? I know you have lots of questions, as I did when my 3 yr old was born, and I still do ask questions. So feel free to ask anything you want as this is an awesome group. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2010 Report Share Posted April 9, 2010 To everybody: Thank you su much for sharing your stories and advices with us, I will be taking all notes possible to ask my docs as soon as next appointments come (early May) they already adviced to get electro cardiograms done for the baby around my 22nd week and I'll ask about any other check ups we need to get done for the sake of this little girl. This situation has brought our families even closer and is making us work to strenghten our love and faith. We believe that God has a purpose for everything and everybody and we'll find day by day what is that He wants us to do out of all this. We believe he can still operate miracles impossible for us to do and imagine, but also that if He wants us to go through this test, He will also enlight us to do the best to represent him as parents of this little angel. Again, thank you so much for the welcoming, the advice, the moral support that you guys provide by letting us know we are not alone! Take care and keep sharing! Gaby. ________________________________ To: MosaicDS Sent: Fri, April 9, 2010 5:16:18 AM Subject: Re: Re: New Member  Hi, Gaby. Welcome! I just wanted to respond as we also had found out about our daughter's diagnosis through the amnio. However, we hadn't done any earlier tests so when the Dr came in with our results - which we felt were more routine than something to worry about this being our 2nd child - and we'd done the amnion the first time around... Then, the Dr told us - and what a day that was! All the emotions, aside - we spent the next 72 hours surfing the net reading everything we could trying to learn what we could!!! And, as we all know - not all info on the web is accurate, to say the least! We both had heard of DS, but not really familiar with what it meant, nor had any personal experiences with anyone with the syndrome. And neither of had ever heard of MDS, obviously, as it's even more rare. So, we had a lot of " learning " to do. We did a lot of worrying before Avery's birth, but once she arrived we really " got it " that she's just another little girl. Just another perfectly wonderful, beautiful baby girl. She may have different needs than our first daughter did, but no two babies are alike, anyway. Ain't that the truth! You guys can do this and will be wonderful parents. You are already reaching out to understand and be as knowledgable and helpful to your new baby, as possible. What you will learn, as we all have is that our children with mDs teach us a lot more than we teach them! Profoundly touching and meaningful life lessons... Anyway, we are glad you found IMDS. This is a fantastic group of parents and individuals with MDS - who are very open and supportive in sharing their personal stories. Christie (mommy to Sedona 2yrs, Avery 8 mos, mDs) Re: New Member Hi Jen! First of all thank you all for the welcoming! Well, my name is Gaby and I am a 38 yr old second time expecting mom from SoCal. I am almost five months along my pregnancy and we started having the hints of DS since my first and second trimester tests came back abnormal for the AFP, so we decided to get the amnio done a week ago and this morning the results provided by my genetic counselor were positive for MSD. I was so tangled up in my brain trying to comprehend and understand all the info that was being provided over the phone to me, that I forgot to confirm the baby's gender. So that will have to be disclosed later on Now as anyone of you parents going on through the same situation dealing with MSD, I have a lot of questions crossing my mind right now(especially since it's the first day I know about this), and for the most I've tried to research all day long on the net, I still seem to go back and forth in my understanding about what the factual difference is between MSD and SD, EXCUSE ME for my ignorance, but I have to admit I never even heard of the different types of SD before! so I really appreciate any elightment you guys can provide me with and comments on how it has affected your baby's and family life. I feel the world weight on my shoulders right now, but am still trying to keep the faith and believe we can deal with this and be of good help for our kid. Thank you so much sincerely for everything you can bring me up to in this MSD world. Your new friend, Gaby Casario. > > Hi everyone, > > We have a new member and here is what she had to say. > > Im expecting an MSD baby in 4 months, trying to learn as much as poss > about this syndrome and how can I better help my little one. Thanks! > > > Hi, my name is and I'd like to welcome you to the group. How exciting to be expecting a baby !! What is your name and do you know if the baby is a boy or girl? What led to the diagnosis of your baby? I know you have lots of questions, as I did when my 3 yr old was born, and I still do ask questions. So feel free to ask anything you want as this is an awesome group. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2010 Report Share Posted April 9, 2010 all of these posts have been a great reminder to me as I watch my 13 year old grow into an amazing and unique individual. My mantra - when our hearts are cracked open by painful experiences we are more open to give and receive love. Good luck Gaby, keep us posted. Pattie mom to 13 mds and 20. ________________________________ To: MosaicDS Sent: Fri, April 9, 2010 2:41:40 PM Subject: Re: Re: New Member To everybody: Thank you su much for sharing your stories and advices with us, I will be taking all notes possible to ask my docs as soon as next appointments come (early May) they already adviced to get electro cardiograms done for the baby around my 22nd week and I'll ask about any other check ups we need to get done for the sake of this little girl. This situation has brought our families even closer and is making us work to strenghten our love and faith. We believe that God has a purpose for everything and everybody and we'll find day by day what is that He wants us to do out of all this. We believe he can still operate miracles impossible for us to do and imagine, but also that if He wants us to go through this test, He will also enlight us to do the best to represent him as parents of this little angel. Again, thank you so much for the welcoming, the advice, the moral support that you guys provide by letting us know we are not alone! Take care and keep sharing! Gaby. ____________ _________ _________ __ From: Christie <callennyoptonline (DOT) net> To: MosaicDS@yahoogroup s.com Sent: Fri, April 9, 2010 5:16:18 AM Subject: Re: Re: New Member Hi, Gaby. Welcome! I just wanted to respond as we also had found out about our daughter's diagnosis through the amnio. However, we hadn't done any earlier tests so when the Dr came in with our results - which we felt were more routine than something to worry about this being our 2nd child - and we'd done the amnion the first time around... Then, the Dr told us - and what a day that was! All the emotions, aside - we spent the next 72 hours surfing the net reading everything we could trying to learn what we could!!! And, as we all know - not all info on the web is accurate, to say the least! We both had heard of DS, but not really familiar with what it meant, nor had any personal experiences with anyone with the syndrome. And neither of had ever heard of MDS, obviously, as it's even more rare. So, we had a lot of " learning " to do. We did a lot of worrying before Avery's birth, but once she arrived we really " got it " that she's just another little girl. Just another perfectly wonderful, beautiful baby girl. She may have different needs than our first daughter did, but no two babies are alike, anyway. Ain't that the truth! You guys can do this and will be wonderful parents. You are already reaching out to understand and be as knowledgable and helpful to your new baby, as possible. What you will learn, as we all have is that our children with mDs teach us a lot more than we teach them! Profoundly touching and meaningful life lessons... Anyway, we are glad you found IMDS. This is a fantastic group of parents and individuals with MDS - who are very open and supportive in sharing their personal stories. Christie (mommy to Sedona 2yrs, Avery 8 mos, mDs) Re: New Member Hi Jen! First of all thank you all for the welcoming! Well, my name is Gaby and I am a 38 yr old second time expecting mom from SoCal. I am almost five months along my pregnancy and we started having the hints of DS since my first and second trimester tests came back abnormal for the AFP, so we decided to get the amnio done a week ago and this morning the results provided by my genetic counselor were positive for MSD. I was so tangled up in my brain trying to comprehend and understand all the info that was being provided over the phone to me, that I forgot to confirm the baby's gender. So that will have to be disclosed later on Now as anyone of you parents going on through the same situation dealing with MSD, I have a lot of questions crossing my mind right now(especially since it's the first day I know about this), and for the most I've tried to research all day long on the net, I still seem to go back and forth in my understanding about what the factual difference is between MSD and SD, EXCUSE ME for my ignorance, but I have to admit I never even heard of the different types of SD before! so I really appreciate any elightment you guys can provide me with and comments on how it has affected your baby's and family life. I feel the world weight on my shoulders right now, but am still trying to keep the faith and believe we can deal with this and be of good help for our kid. Thank you so much sincerely for everything you can bring me up to in this MSD world. Your new friend, Gaby Casario. > > Hi everyone, > > We have a new member and here is what she had to say. > > Im expecting an MSD baby in 4 months, trying to learn as much as poss > about this syndrome and how can I better help my little one. Thanks! > > > Hi, my name is and I'd like to welcome you to the group. How exciting to be expecting a baby !! What is your name and do you know if the baby is a boy or girl? What led to the diagnosis of your baby? I know you have lots of questions, as I did when my 3 yr old was born, and I still do ask questions. So feel free to ask anything you want as this is an awesome group. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 - Thank you so much for the welcome. I am so overwhelmed right now with everything from support from friends and family to the amount of information that I need to catch up on. My husband and I live in Rocklin, CA and we have two beautiful boys, 3 1/2 and Ethan 13 months (today!). Today Ethan was diagnosed with Mosaic Down Syndrome. Ethan is a bowl full of smiles and love. I call him my " Lovie " because he loves hugs and kisses. He gives the best hugs! At 9 months old he wasn't pushing himself up on his arms or knees to put himself in the " crawling " position. He hated tummy time. He has been sitting by himself since 4 months old. I figured that he would just rather sit up than be on his tummy. Our pediatrician was concerned that, when held up from the ground, Ethan would put his legs out at a 90 degree angle and not try to put his feet down. He referred us to the M.I.N.D. Institute here in Sacramento for an evaluation, but they were so backed up we didn't get in. Honestly, I didn't think anything of it. I was of the mind that he would crawl, stand, walk when he was ready - obviously with our support, help and guidance. It wasn't unheard of for a 9 month old to not have been crawling yet. Between 9 months and Ethan's 12 month check up last Tuesday, I had seen an increase of mobility in him. He scoots around all over the place on his bum. I worked with him on standing up with help. He does it, but is very wobbly. He tries to pull himself up on his knees by pulling on the toy box. I saw much improvement. At his 12 month check up last Tuesday, we discussed his development with our pediatrician. My husband has always felt like something was off, so he flat out asked if there is a possibility of Downs. We have a wonderful pediatrician who didn't blow us off and told us about another patient he had where the patients parents felt like something was off. Although, he didn't think there was, he referred the family to specialist. The specialist thought the baby was fine, but still the parents felt like something was wrong. They ordered a blood test to rule it out and in fact, even though the child had no physical signs or developmental issues, he had Downs. So my husband then asked what the test entailed. A simple blood test! Since there were issues with his development we thought it best to rule it out. One week later, today, the results came in. Positive! Now, everything seems to be moving very quickly. We have referrals in to a geneticist, audiologist, occupational therapist and cognitive analysis. Looking back, I wonder if any of the other problems that Ethan has had have anything to do with the MDS. He has had constipation issues - been on Miralax since 4 months old, his right ear is much smaller than his left - specialist said it is only cosmetic and that there are not internal hearing problems, he was born with clogged eye ducts and a year later when they should be cleared up they are still causing problems for him. Prior to the diagnosis we have a referral in for an oncologist to take a look. We are just trying to take all of this in. There is so much for us to learn. After all the reading I have done today, I think I have a clear understanding of the difference between Downs Syndrome and Mosaic Downs Syndrome. I will look to this group for help in the next step - what questions to ask of all these doctors and specialist that we are going to be seeing. Again, thank you from the bottom of our hearts. I feel a bit shallow with all the crying that I have done today - after all, he is fine and we are so blessed to have two beautiful boys. The first thing my husband said to me after we go the news, " i love him even more than I did 5 minutes ago. " We are so lucky. > > We have a new member and here is what she wrote. > > Today, my 13 month old son has been diagnosed with MDS. While we are > still in shock over it, we are looking for as much information as > possible to be prepared for what's to come. > > Welcome to the group ! Feel free to ask any questions you might have. We have all been where you are and there are no silly questions. This is a great group with lots of information. Please tell us more about yourself and your son, such as names and what led to his diagnosis? Looking forward to hear more about you and your son. > > , mom to Zephany, DS and Jezeca, Trisomy 10q/5p- syndromes > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Happy Birthday Ethan.Our Our heart is with him and the parents. Oana has 30 years my daughter has MDS. He likes dancing. Floreta Subject: Re: New member To: MosaicDS Date: Wednesday, April 14, 2010, 8:09 AM Â - Thank you so much for the welcome. I am so overwhelmed right now with everything from support from friends and family to the amount of information that I need to catch up on. My husband and I live in Rocklin, CA and we have two beautiful boys, 3 1/2 and Ethan 13 months (today!). Today Ethan was diagnosed with Mosaic Down Syndrome. Ethan is a bowl full of smiles and love. I call him my " Lovie " because he loves hugs and kisses. He gives the best hugs! At 9 months old he wasn't pushing himself up on his arms or knees to put himself in the " crawling " position. He hated tummy time. He has been sitting by himself since 4 months old. I figured that he would just rather sit up than be on his tummy. Our pediatrician was concerned that, when held up from the ground, Ethan would put his legs out at a 90 degree angle and not try to put his feet down. He referred us to the M.I.N.D. Institute here in Sacramento for an evaluation, but they were so backed up we didn't get in. Honestly, I didn't think anything of it. I was of the mind that he would crawl, stand, walk when he was ready - obviously with our support, help and guidance. It wasn't unheard of for a 9 month old to not have been crawling yet. Between 9 months and Ethan's 12 month check up last Tuesday, I had seen an increase of mobility in him. He scoots around all over the place on his bum. I worked with him on standing up with help. He does it, but is very wobbly. He tries to pull himself up on his knees by pulling on the toy box. I saw much improvement. At his 12 month check up last Tuesday, we discussed his development with our pediatrician. My husband has always felt like something was off, so he flat out asked if there is a possibility of Downs. We have a wonderful pediatrician who didn't blow us off and told us about another patient he had where the patients parents felt like something was off. Although, he didn't think there was, he referred the family to specialist. The specialist thought the baby was fine, but still the parents felt like something was wrong. They ordered a blood test to rule it out and in fact, even though the child had no physical signs or developmental issues, he had Downs. So my husband then asked what the test entailed. A simple blood test! Since there were issues with his development we thought it best to rule it out. One week later, today, the results came in. Positive! Now, everything seems to be moving very quickly. We have referrals in to a geneticist, audiologist, occupational therapist and cognitive analysis. Looking back, I wonder if any of the other problems that Ethan has had have anything to do with the MDS. He has had constipation issues - been on Miralax since 4 months old, his right ear is much smaller than his left - specialist said it is only cosmetic and that there are not internal hearing problems, he was born with clogged eye ducts and a year later when they should be cleared up they are still causing problems for him. Prior to the diagnosis we have a referral in for an oncologist to take a look. We are just trying to take all of this in. There is so much for us to learn. After all the reading I have done today, I think I have a clear understanding of the difference between Downs Syndrome and Mosaic Downs Syndrome. I will look to this group for help in the next step - what questions to ask of all these doctors and specialist that we are going to be seeing. Again, thank you from the bottom of our hearts. I feel a bit shallow with all the crying that I have done today - after all, he is fine and we are so blessed to have two beautiful boys. The first thing my husband said to me after we go the news, " i love him even more than I did 5 minutes ago. " We are so lucky. > > We have a new member and here is what she wrote. > > Today, my 13 month old son has been diagnosed with MDS. While we are > still in shock over it, we are looking for as much information as > possible to be prepared for what's to come. > > Welcome to the group ! Feel free to ask any questions you might have. We have all been where you are and there are no silly questions. This is a great group with lots of information. Please tell us more about yourself and your son, such as names and what led to his diagnosis? Looking forward to hear more about you and your son. > > , mom to Zephany, DS and Jezeca, Trisomy 10q/5p- syndromes > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 > > > > > > We have a new member and here is what she wrote. > > > > > > Today, my 13 month old son has been diagnosed with MDS. While we are > > > still in shock over it, we are looking for as much information as > > > possible to be prepared for what's to come. > > > > > > Welcome to the group ! Feel free to ask any questions you might have. We have all been where you are and there are no silly questions. This is a great group with lots of information. Please tell us more about yourself and your son, such as names and what led to his diagnosis? Looking forward to hear more about you and your son. > > > > > > , mom to Zephany, DS and Jezeca, Trisomy 10q/5p- syndromes > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 Hi Casey, Welcome to the group! Like you and your husband, we are also new to the world of MDS. Our daughter Olivia was born 3 1/2 weeks ago and was diagnosed at birth. Please don't feel bad or 'shallow' about the whirlwind of emotions you are feeling. I think it's normal to go through a full range of emotions, feeling knocked off your feet, confused ... but one thing that this group has shared with me, is that our children are so special and this diagnosis will not define who they are. The love that we have for them only grows stronger as we walk this new road. We too are trying to adjust, not only to having a newborn, but also having to cope with the referrals and appointments - with cardiologists, hearing specialists, as well as getting connected to the local regional center, which will mean assessments with PT, OT, ST ... it's going to take awhile to really get settled. Through it all, as one of the Mom's on this site reminded me, I'm going to spend every second enjoying my little girl! She is our joy! as I know you and your husband enjoy and cherish your boys. They are so precious. I hope you find what you need here! Tacia Mom to Olivia, 3 1/2 weeks old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010 MDS children have respiratory problems. Oana my daughter now has 30 years, had respiratory problems in the first year of life. They are more serious if associated with congenital heart malformation. I took care not to cool. Good health Floreta > > Hope this e-mail is received. > > Well if so, My name is Del , I have a son, Javen that was > diagnosed with DS at 6 weeks. Javen is now 19 months old and full of > energy. He receives EI,PT,and SPEECH. All of his therapist are just > great people. With the exception of Respiratory problems Javen hasn't > had some of the more serious problems associated with DS. He recently > had a hearing exam (just as a baseline) it was determined that fluid > might be in the ear drum. His Ped. (who is a wonderful person as well as > Doctor) is treating with antibiotics first; then if that doesn't seem to > work, then tubes. It was also determined that he can hear, but it sounds > alittle muddled. > > Just to give some background, I was 36 year old when I gave birth to > Javen. He was 36 weeks old at the time he was delivered via C-section. > Javen is my only child. My husband agreed that after the Triple Blood > test showed a possibility of DS. Further test would not have any effect > on weather to have Javen or not. You see, we had been trying to have a > baby for eight years. Javen is our miracle. With all the abilities and > inability's; we believe God gave us Javen. > > I look forward to talking and adding things that will enpower us and our > children. > > Del > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010 Thanks Tacia and congratulations on your new baby girl, Olivia. Being a mom is the best thing in the whole wide world and I wouldn't change it for anything. I picked up a binder today to have something to keep track of everything. Just waiting for the phone to start ringing from the referrals that are out so we can get appointments on the calendar. There are so many unanswered questions at this point. Have a wonderful day! Jen Mom to 3 years old and Ethan 13 months > > Hi Casey, > > Welcome to the group! Like you and your husband, we are also new to the world of MDS. Our daughter Olivia was born 3 1/2 weeks ago and was diagnosed at birth. Please don't feel bad or 'shallow' about the whirlwind of emotions you are feeling. I think it's normal to go through a full range of emotions, feeling knocked off your feet, confused ... but one thing that this group has shared with me, is that our children are so special and this diagnosis will not define who they are. The love that we have for them only grows stronger as we walk this new road. > > We too are trying to adjust, not only to having a newborn, but also having to cope with the referrals and appointments - with cardiologists, hearing specialists, as well as getting connected to the local regional center, which will mean assessments with PT, OT, ST ... it's going to take awhile to really get settled. Through it all, as one of the Mom's on this site reminded me, I'm going to spend every second enjoying my little girl! She is our joy! as I know you and your husband enjoy and cherish your boys. They are so precious. I hope you find what you need here! > > Tacia > Mom to Olivia, 3 1/2 weeks old > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 I wanted to find out how people found out their child had MDS after infancy. My grandson is a year old and has hit all his milestones so far, maybe a month or so later than my other grandchildren. He has epicanthic folds on his eyes and very fine hair. His nasal bridge isn't developed. He is small, only weighs 19 pounds. Those are his only physical characteristics that make me feel he could have MDS. He walked at 12 months. My brother with full downs had epicanthic folds on his eyes too. He did not walk until 18 months. I could be entirely off base and have not said anything to my daughter about my concerns. Dee > > Please welcome a new member. Here is what they had to say. > > My brother had Downs and my grandson may have MDS > > > > > My name is and I have a daughter with DS. Can you please tell us more about you and your family, such as names and where you live? How old is your grandson? Looking forward to hearing more and ask any question and we will be happy to answer them. > > , > Mom to Zephany, age 4 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 All, I received an email from Patty Fried this AM regarding her being robbed at gunpoint in Whales. The same message was sent to everyone in my sister's address book a few months ago. It is a scam to get $$. Just letting you know in case you would try to help. Sent on the Sprint® Now Network from my BlackBerry® New Member We have a new member joining us and this is what they had to say... I have a 4yr old son w/Mosaic DS Welcome to the group! Can you tell us more about you and your son? What are your names and when did you find out about his diagnosis? Please feel free to ask any question you might have. We are all here for support and to learn more about MDS. , mom to Zephany, age 4, DS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Thanks for the heads up. I sure did get one and replied offering prayers as I don't have that kind of money. So sad that ppl even prey on groups like this. Sent via BlackBerry from T-Mobile New Member We have a new member joining us and this is what they had to say... I have a 4yr old son w/Mosaic DS Welcome to the group! Can you tell us more about you and your son? What are your names and when did you find out about his diagnosis? Please feel free to ask any question you might have. We are all here for support and to learn more about MDS. , mom to Zephany, age 4, DS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Oh yeah. Hackers get into your e-mail/address book and send that garbage out. Besides, Wales is spelled differently. And the message more than likely did not come from that member if she is a member. I have gotten that message on most all of my groups. > > All, > > I received an email from Patty Fried this AM regarding her being robbed at gunpoint in Whales. The same message was sent to everyone in my sister's address book a few months ago. It is a scam to get $$. Just letting you know in case you would try to help. > > > Sent on the Sprint® Now Network from my BlackBerry® > > New Member > > We have a new member joining us and this is what they had to say... > > I have a 4yr old son w/Mosaic DS > > > > > Welcome to the group! Can you tell us more about you and your son? What are your names and when did you find out about his diagnosis? Please feel free to ask any question you might have. We are all here for support and to learn more about MDS. > > , mom to Zephany, age 4, DS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 DON " T REPLY to the messages, as they hack your e-mail when you do and then they still addresses in your address book. You might want to change your passcode. > > Thanks for the heads up. I sure did get one and replied offering prayers as I don't have that kind of money. So sad that ppl even prey on groups like this. > Sent via BlackBerry from T-Mobile > > New Member > > We have a new member joining us and this is what they had to say... > > I have a 4yr old son w/Mosaic DS > > > > > Welcome to the group! Can you tell us more about you and your son? What are your names and when did you find out about his diagnosis? Please feel free to ask any question you might have. We are all here for support and to learn more about MDS. > > , mom to Zephany, age 4, DS > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2010 Report Share Posted October 7, 2010 Hi everyone, We have a new family joining us today and this is what wrote: My name is . My son Maximus is 2 1/2 years old and has been diagnosed with Mosaic Down Syndrome. As of now, his only delay is speech. Welcome to our group and your son as well. Tell us more about your son, Maximus. Did he just get diagnosed? This is a great group to ask questions about MDS. Bolduc Mom to Zephany, age 4, Ds Quote Link to comment Share on other sites More sharing options...
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