Guest guest Posted November 11, 2004 Report Share Posted November 11, 2004 And another possible member.... let's give her some info.... She wrote: " I am 22 years old. I just had a baby boy named diagnoised with down syndrome. (possible mosiacism) I want more info. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Oh I so agree!!!!.....I would have 20 kids if I knew they would all be as easy as !!! Granted she is only 6 months old, but so far she has been a breeze. So easy!!! Jess - Mommy to Princess - 6 months/mds Green wrote: Hi, Congratulations! You were given a gift!, all the promises of tomorrow are his. I am the mom of four children and my little guy will be two at the end of this month. It was the not knowing that scared me at first but... what I know now I would have five more like him! mom to 9, 7, 4 and 23 months MDs >From: " " >Reply-To: MosaicDS >To: MosaicDS >Subject: And more!!! >Date: Thu, 11 Nov 2004 12:29:03 -0000 > > >And another possible member.... let's give her some info.... > > >She wrote: > " I am 22 years old. I just had a baby boy named diagnoised >with down syndrome. (possible mosiacism) I want more info. " > > > _________________________________________________________________ Don’t just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Become a member of IMDSA today at http://www.imdsa.com ************************************************* Learn more about MDS http://www.mosaicdownsyndrome.com ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Jess: I was 31 years old when Karlee was born. I had trouble conceiving, but drs. were never able to pinpoint exactly why. I think we had a discussion before about other mothers/couples that had trouble conceiving then having a child with mds. Beets Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Hi " Mom to " I raised 3 kids, now all grown with children of their own, I am grandma to to 8!!! I am Jess's Mom, and Grandma to 6mo MDS. Yes, it is the " not knowing " that scares you to death, and not knowing what the future will hold. But you know what, you do not know what the future holds for a NON Down's child, there are no gurantee's either way. I lost a " normal " baby to Sudden Infant Death Syndrome, so that is why I say there are no gurantees even with a healthy baby, and 2 of my grandkids suffer with Rheumtoid Arthritis, diagnosed before 5yrs of age. In both, you have to do the best that you can do for your child, and love them with all your heart & soul :<) We do not know how will be affected, it is too early to tell as she is only 6mo, so far she has met all of her milestones at the " normal " time, she is sitting up, " talking " , playing peek-a-boo, etc......She has had some problems with constipation, so at the moment the constipation has been the first real sign of problems, but Jess is working on that with the help of this support group. Please try to stay with this support group, they are wonderful here & will give you alot of good info, because they have been through it already. If they don't know they will do their best to find the info for you. I believe the first time that looked Jess in the eye at a few weeks old was when Jess knew that the MDS did not matter, that is was just a little extra something to deal with, which will happen with your little too. These Down's babies are truly a gift from God, I never realized that until came along. I did not realize how much we take for granted with our children as far as milestones until came along. Now we just about throw a party when she " poops " on her own. 's downs look is very mild, it is mainly in her eyes, and when she is tired it is more pronounced. No one can really tell you what to expect because each child is unique in their own way. That is why you should stay with this support group, whatever way your little is affected there will be someone here to help you through it. And as grows and becomes a little person with his own personality he will steal your heart and the Down's will not matter :<) And you will find that some MDS kids pass up the " normal " kids in some areas of education. It is just a wait & see thing. Have you read the story " A trip to Holland " ?? If not you should, it is a beautiful story. Maybe somehere here on the board would be kind enough to direct her to it, since I don't know how :<) Keep in touch with us!! Sherry, Grandma to 6mo MDS Oh I so agree!!!!.....I would have 20 kids if I knew they would all be as easy as !!! Granted she is only 6 months old, but so far she has been a breeze. So easy!!! Jess - Mommy to Princess - 6 months/mds Green wrote: Hi, Congratulations! You were given a gift!, all the promises of tomorrow are his. I am the mom of four children and my little guy will be two at the end of this month. It was the not knowing that scared me at first but... what I know now I would have five more like him! mom to 9, 7, 4 and 23 months MDs >From: " " >Reply-To: MosaicDS >To: MosaicDS >Subject: And more!!! >Date: Thu, 11 Nov 2004 12:29:03 -0000 > > >And another possible member.... let's give her some info.... > > >She wrote: > " I am 22 years old. I just had a baby boy named diagnoised >with down syndrome. (possible mosiacism) I want more info. " > > > _________________________________________________________________ Don't just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Become a member of IMDSA today at http://www.imdsa.com ************************************************* Learn more about MDS http://www.mosaicdownsyndrome.com ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Jess, I am 26 too. I thought the same thing until my dr. told me that was incorrect. Thanks for telling us about that book. I know Emma is 5 months old, but I am going to get that book. It sounds really good. Hope little is doing great. Lynnelle On Thursday, November 11, 2004, at 10:57PM, Jessie Cullen wrote: > ><<Original Attached>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Sherry, Thank you for those beautiful words! and Jess are so blessed to have you! Lynnelle > ><<Original Attached>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2004 Report Share Posted November 12, 2004 Sherry, Thank you for your inspirational words! I think it is always so wonderful to see the grandma's perspective on things! I know, that I have a completely different outlook when it comes to my grandchildren vs my children, and sometimes, it is easier to step back and see the whole picture when it is your grandchild instead of your child. You asked for the " Welcome to Holland " piece.We do send that out in our information packets to our families who join IMDSA along with some other inspirational messages as well as information and research. Here it is: WELCOME TO HOLLAND I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo , the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, " Welcome to Holland. " " Holland? " you say. " What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. " But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, " Yes, that's where I was supposed to go. That's what I had planned. " The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland. Sherry wrote: Hi " Mom to " I raised 3 kids, now all grown with children of their own, I am grandma to to 8!!! I am Jess's Mom, and Grandma to 6mo MDS. Yes, it is the " not knowing " that scares you to death, and not knowing what the future will hold. But you know what, you do not know what the future holds for a NON Down's child, there are no gurantee's either way. I lost a " normal " baby to Sudden Infant Death Syndrome, so that is why I say there are no gurantees even with a healthy baby, and 2 of my grandkids suffer with Rheumtoid Arthritis, diagnosed before 5yrs of age. In both, you have to do the best that you can do for your child, and love them with all your heart & soul :<) We do not know how will be affected, it is too early to tell as she is only 6mo, so far she has met all of her milestones at the " normal " time, she is sitting up, " talking " , playing peek-a-boo, etc......She has had some problems with constipation, so at the moment the constipation has been the first real sign of problems, but Jess is working on that with the help of this support group. Please try to stay with this support group, they are wonderful here & will give you alot of good info, because they have been through it already. If they don't know they will do their best to find the info for you. I believe the first time that looked Jess in the eye at a few weeks old was when Jess knew that the MDS did not matter, that is was just a little extra something to deal with, which will happen with your little too. These Down's babies are truly a gift from God, I never realized that until came along. I did not realize how much we take for granted with our children as far as milestones until came along. Now we just about throw a party when she " poops " on her own. 's downs look is very mild, it is mainly in her eyes, and when she is tired it is more pronounced. No one can really tell you what to expect because each child is unique in their own way. That is why you should stay with this support group, whatever way your little is affected there will be someone here to help you through it. And as grows and becomes a little person with his own personality he will steal your heart and the Down's will not matter :<) And you will find that some MDS kids pass up the " normal " kids in some areas of education. It is just a wait & see thing. Have you read the story " A trip to Holland " ?? If not you should, it is a beautiful story. Maybe somehere here on the board would be kind enough to direct her to it, since I don't know how :<) Keep in touch with us!! Sherry, Grandma to 6mo MDS Oh I so agree!!!!.....I would have 20 kids if I knew they would all be as easy as !!! Granted she is only 6 months old, but so far she has been a breeze. So easy!!! Jess - Mommy to Princess - 6 months/mds Green wrote: Hi, Congratulations! You were given a gift!, all the promises of tomorrow are his. I am the mom of four children and my little guy will be two at the end of this month. It was the not knowing that scared me at first but... what I know now I would have five more like him! mom to 9, 7, 4 and 23 months MDs >From: " " >Reply-To: MosaicDS >To: MosaicDS >Subject: And more!!! >Date: Thu, 11 Nov 2004 12:29:03 -0000 > > >And another possible member.... let's give her some info.... > > >She wrote: > " I am 22 years old. I just had a baby boy named diagnoised >with down syndrome. (possible mosiacism) I want more info. " > > > _________________________________________________________________ Don't just search. Find. Check out the new MSN Search! http://search.msn.click-url.com/go/onm00200636ave/direct/01/ Become a member of IMDSA today at http://www.imdsa.com ************************************************* Learn more about MDS http://www.mosaicdownsyndrome.com ************************************************* Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1- ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 I was 37 when I had in July...then turned 38 that November. I had trouble conceiving and was about to start some Fertility drugs when I found out I was pregnant. I always wondered if there was any connection to the MDS and trouble conceiving? Did anyone else experience something similar? I already had ( now 7 yrs. old) no problems conceiving..the along came Kirk(now 18 MOS.) without even trying...ergo...no trouble at all conceiving? Something to think about... Ross Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 That is very interesting about the trouble conceiving. I wrote my response before I read yours...I don't remember these discussions but could have been before I joined the group..Maybe this would be something Dr. Cook would be interested in exploring? What do you think Kristy? LOL Ross Mom to 7, 3 MDS and Kirk 18 mos. Quote Link to comment Share on other sites More sharing options...
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