My Emily

Valerie - posted on 11/10/2008 ( 19 moms have responded )

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I have a 20 month old daughter that has Down Syndrome. She is the joy of my life. She was diagnosed with DS when she was 4 months old. I love her to death!

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Jen - posted on 04/09/2009

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I just had my daughter, Cameran, on March 21st. It wasnt until the third day in the hospital after delivery that the pediatrician on call suggested she might have Down syndrome and suggested a blood test.  We were shocked.  I am only 27 and we never had anything in our family history that made us think for a second this could even happen.  Mostly when you look at Cami you can't tell, which is why we think it took several days for any doctor to even suggest it.  About a week ago the results came back positive.  We were angry and upset for a period of time while we were waiting for the results, but now realize that God has given her to us for a reason, and all we can do is love her and not try to question things.  The hardest is not looking too far into the future.  So far she has undergone her EKG, which is seemingly fine.  It is overwhelming at the amount of preventative specialists we have to go to though! I feel like a have an appointment 1-2 times a week for the next month or so!  I am not an overtly shy person, but I like the idea of chatting on facebook better than picking up the phone and calling a local support group for families of children with Downs at this point, so if anyone has any stories, tips, etc, I am more than glad to hear them.  Thanks!

Christina - posted on 04/06/2009

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Quoting Valerie:

Heather-Wow! I haven't EVER heard of that happening until it happened to Emily. That's weird too that they were diagnosed at the same age and they pretty much are the same age. How old are you? I'm 23 now. I was 22 when I had her.



i am also 23. i was 22 when i had my son rylan, who was diagnosed 5 days after i delivered. i havent heard of anyone my age having a child with down syndrome until today! :)

Nataliee - posted on 03/20/2009

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hi i have gt a lil girl at 6 munths whos gt down syndrome i found out she had it wen i was 6 munths pregnant and i love her 2bits dows r the most lovin kids xxx

Marnie - posted on 03/17/2009

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Sara, I have a 2 year old with down syndrome. He is the youngest of three. I know it seems scary at first, but relax. Braiden made 2 in November and he is smart, funny and so happy and loving. He makes everyone around him happy. Does your son have any health problems? Braiden has had some minor things( slow weight gain, constant bacterial infections, pneumonia,rsv), but nothing major or life threatening. I consider us very fortunate. However, he does have something called fabrys, which is a rare metabolic disease. There are not an known cases of someone having down syndrome and fabrys, so we are not really sure if there will be any interaction or complications because of the two. His doctors do not expect any, but it can still be scary. Anyway, If there aren't any serious health issues to worry about, relax because he is going to be the light of your life!!

Jackie - posted on 03/15/2009

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Such beautiful children and such amazing families.  I adopted my daughter Gracie when she was 16 months old.  She is now in kindergarten and doing well.  She also has ADHD but the special ed teacher and the therapists are amazing.  They accomplish so much with her.  She is the joy of my life.

Rebecca - posted on 03/13/2009

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I was shocked when a doc. suggested he had DS, i cried for 2 days, then refused to believe it for a week... the 3 weeks waiting for the tests to come back was the worst part... 5 days before christmas we got the news... by then i had mostly accepted it. I really expected it to change things. It really didnt. He was already seeing a speech therapist (born with cleft soft pallate) and now he also sees a physical therapist. We have "exersizes" to work on muscle tone... he loves them and laughs through most of them. He is starting to use baby sign and is pulling himself to standing.

He is as amazing and beautiful to me as ever, I totally agree with you Beverly... when i look at him, all i see is my amazing little boy...

Rebecca - posted on 03/13/2009

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I have a 16 month old son who was diagnosed with Downs Syndrome 4 months ago...

Beverly - posted on 01/22/2009

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Sara- Do everything you would do if he didn't have DS. My little guy is a little over two and is funny, smart, and the best little boy you could ask for. I work with him everyday by reading, which he LOVES, singing, talking to him all the time about everything. Right now he knows over 100 signs, all of the basic shapes, colors, and can read about 5 words. Just love him. Don't worry about too far in the future. Just work on today! We didn't know Landon had DS until he was born and once we got over the initial shock...I rarely even think about the DS, I only think about my Little Boy.

Rose - posted on 01/01/2009

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You guys are so lucky!! I lost my daughter Jazlynette ... I wish I could have her back again!! She was stillborn cuz of fluids in her heart and lung. She died 07-07-07...Shes special angel to us...Can't wait to see her again when it is time for me to go. Your all kids are beautiful angels sent from the Lord!! It makes me happy to see this.

Valerie - posted on 12/30/2008

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Hey Sara...I know exactly how you feel. I've cried myself to sleep many nights. There have been days when I looked at my Emily and had no idea what the heck to do for her, but there are so many more days that she brings such joy to my life. I would love to give you some advice on some things that you can do to help your son and your family, but this post probably wouldn't hold it. Add me as a friend on your facebook, and we can message back and forth if you would like. There are so many options out there to help these children. I was blessed to have a pediatrician to help me with it. I would love to help you. I will send you a request now.

Sara - posted on 12/30/2008

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hi i have a 6 week old little baby boy who was diagnosed with downs a week after we got home from the the hospital, i was wondering if anyone who knows what our family is going through has any advice. i would greatly appreciate it.

Valerie - posted on 11/12/2008

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Heather-My daughter has had no serious heart problems. She has what they call a VSD. It's a little hole in her heart, BUT it has been getting smaller and smaller every time we have gone back to the cardiologist (praise the Lord) and they fully expect it to close completely. So, we have been very blessed in that area. I have heard horror stories from her pediatrician about what some other kids with DS have to go through.

Carol-That's wonderful that you adopted him! He looks precious in that picture with you! The only problems that Emily has had is her thyroid, some allergies, acid reflux, and that VSD that I mentioned. Very minor problems that really haven't been that much of a problem at all. The biggest problem that she has though has nothing to do with DS. She also has Type 1 diabetes. I always tell her that she is just too sweet for her own good!

Carol - posted on 11/11/2008

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I consider myself soooo very lucky, Mayson does not have any heart problems. He has asthma and respitory problems.

He came to my home when he was 2 yrs old and I just got the papers of his adoption on Jan 10/08. I love him so much and he has come soo far

Heather - posted on 11/11/2008

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I was 26 when I had him. He had open heart surgery at 4 1/5 months and has been flourishing ever since. :)

Valerie - posted on 11/11/2008

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Carol-Violent! That makes me laugh. I've never known a DS child that was anything but sweet as sugar.

Heather-Wow! I haven't EVER heard of that happening until it happened to Emily. That's weird too that they were diagnosed at the same age and they pretty much are the same age. How old are you? I'm 23 now. I was 22 when I had her.

Heather - posted on 11/11/2008

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Most other kids with Down Syndrome are diagnosed at birth in the hospital. My son is 19 1/5/ months old and was also diagnosed at 4 months old:) I don't hear that happening that often.

Carol - posted on 11/11/2008

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some people have asked me if he is violent and to that I almost laugh. My son is 6 yrs old I adopted him. I have only experience 1 child that had downs that I did not enjoy.

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