Down Syndrome Support Group

Well they have to do a genetic test to deside and get a dx of Downs Syndrome. They can tell you if the extra chromosome is in all of her cells or just some of them. Im guessing that this is a surprise. Ours was too, she was dx at birth. So Im sure that your sis is on a roller coaster. I think the best thing for you to do is to let her know that your okay and that you care and are interested to learn about how to help her. Also let her know that just because she is Downs doesnt mean that she cant have a normal IQ and lots of friends. Our daughter is 7 months old now and is the best baby I have ever seen. She is always happy, easy going and people just love her. This is a great site to be on. You should get her on here, no one will judge her and she can be honest and get very honest replies and lots of help. Right now is important. If she has low tone (is really loose and flimsy) I would start looking for a PT we started our daughter in at home PT when she was a week out of the NICU. She is almost crawling now. Its best if you dont waste anytime. The quicker they get going the easier it is to keep things on the right track and see where she might have problems. I honestly think that in a few months your sister will be so much in love with this little girl that she wont even notice the Downs half the time. And good for you for being an active participant. She will need lots of support and love and it sounds like she has it.

The hospital that your sis is in will give you info on DS organisations near you then they can put you intouch with therapy specialists etc that she will need. Right now you sis needs to enjoy her baby because regardless of the DS she is still a baby. She will need all the things that a typical baby needs and other than probably poor muscle tone and maybe some health issues she will do all the things that a typical baby does just a little slower.My baby is only 3mths and i knew about the DS before she was born but the thing that surprised me most was how very normal she is once you accept the DS you will only see a beautiful baby when you look at her and so will everyone else.My main advise to you is do not pity your sis be supportive and proud that she has given birth to the most amazing gift.

Go to the Kennedy Kreiger Institue on the net you will get a list of everything that she should be tested for and that you need to know. I spent 15 months finding out slowly alot of things through ER visits, numerous doctor visits etc. It was all right on that site. Tell her to #1 ALWAYS trust her gut/instincts over all doctors and nurses etc. And seek what you believe. If I had not done that my son would have died. ENJOY! What a true blessing!That babies only limits are us.

C O N G R A T S !!!!!
BE SURE TO CONGRATULATE THEM!!!
Fussing over the baby helped me, the usual cooing and wanting to hold the baby, as much of a normal reaction is THE BEST approach. Get all info as advised BUT that can be overwhelming so get all the info and then ask her or her husband if they'd like to read something you found or just leave some phamplets. NOT ALL AT ONCE. Google the poem: Welcome to Holland by Emiley Pearle Kingsley VERY COMFORTING. It has the potential of being the absolutely best thing that ever happens to them, it was for me my daughter is now 25 yrs old and continues to bring joy every day. Now there are bad days and it is difficult and challenging but what worthwile thing isn't??? LOVE, LOVE, LOVE, LOVE that family....and congrats to you too.


ps....Thank you for being such a great Aunt, your Niece is lucky to have you in her life. ENJOY, i know you will.

I forgot to mention that my daughter reads at a fourth grade level does simple math was completly mainstreamed from gr 4 thru 6th. Now works 5 days a week with a job coach. She just got promoted to QUALITY CONTROL (does anyone but hubby and I find this extreemly ironic?)and does so many activities with friends it's hard to keep up with her. She has so many friends I can't even give you a number. She has a boyfriend. She has a laptop computer and schedules her own transportation (a 5 step process for each way, each day). She also has a checking account and likes $20 dollar bills, $1's and Quarters!!!! Has an awesome vocabulary and reads chapter books every nite. She also loves Hannah Montanna and HS Musical. Just thought you'd like a snapshot of her life.

Just be happpy for them and show it around them too. It is a tough first few weeks but then it does get better with time..My daughter needed me around for the first few months but now is doing OK... The people on this site will be so helpful..Glad u joined us nice to have you. Ur in for the funnest ride of ur lives with her if she does have ds...Hugz and Love Vic

They are a blessing from God above. The test are probably to see that all is well b/c there is alot of medical.Mostly to check all is o.k. w/ her heart and stomach. My daughter has down syndrome we say "up syndrome" b/c she lifts our spirits. But all is fine she has a heart condition called pda and we live @ a hospital right now b/c she is sick but we'll be fine. she was high risk for rsv & that's how all this started but best of luck I recommend the book Babies w/ down syndrome it's very helpful.

now that the baby is a bit older -- the best advice I can give you is to not be afraid of her! Help your sister with her and BABYSIT her. give your sister a breather. It is so difficult because I have found that when I need help, everyone offers to take care any of my children (there is 6 total) EXCEPT for my Downs son -- NO ONE wants to take care of him - and I know it is from an ignorant type of fear and it irritates the junk out of me so just offer to take her your sister will so appreciate it

i just want to say CONGRATULTION. just be there for you sister. i am sorry i came in to this late. is your neice still in the hospital? it's going to be a long and hard road but it will be the best road that your family will travel. my little guy is best, well both of my boys are but my little guy has the edge over his older brother because he is only 8 and his older brother is 20 and my little guy just loves his mother lol i'm sorry i got carried away. there will be lots of test, doctors appointments. this is very hard for me to do because i could just go on and on about my little guy if you want you can e-mail me and i'll give you my phone number and we can talk when ever you want too.. alley61
at
aol
dot
com

Congratulations. As i was told the other day. When a downs baby is born, god has taken everything good and put it all in one little bundle. Yes there will be lots of appointments, test, difficult situations. But we wouldn't swap our katie for anything. She's only 15months old but has brought us so much joy. Your sister will need alot of help and support but it's well worth it in the end.