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Old 04-01-2011, 10:23 PM - Thread Starter
 
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Can you give me some resources for my friend she has a 9 day old baby who just got diagnosed with down syndrom. they will be looking at his heart becasue of a murmur.

 


SAHM to D ( 10/06 ) A (10/08) & C (03/11)
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Old 04-02-2011, 12:44 AM
 
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My daughter is two and has Down Syndrome.  She had open heart surgery at 4 months.  Check out this thread.  There are some great suggestions here that might help:    http://www.mothering.com/community/forum/thread/1301328/down-syndrome-questions-support

I would MOST highly recommend that she visit downsyn.com (great support, a wealth of info).  There are parents from all over the world on the forum, including Canada.  (Assuming she's Canadian).  I would also be glad to talk to her if she has any questions.  Send me a message if I can be of help in any way--


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Old 04-13-2011, 12:12 AM
 
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Congrats to your friend!  I am Katrina and I have a 7 year old son who has Down syndrome.  Brant had a heart murmur as well that was caused by 2 small holes in his heart that did require surgery when he was 8 months old to fix.  It's pretty amazing how far they have come in medical advances that Open Heart Surgery has become a "routine" operation these days.  And children with Down syndrome statistically do better with the surgery and recovery than those who don't have Down syndrome.  Not saying it will happen but even if it's necessary, while it seems like a big deal (and it is because it's our kid going for surgery!) in the grand scheme of things there are much worse things :)  I noticed you are in the Fraser Valley - I am probably not too far from you in the lovely town of Chilliwack.  If you'd like to connect with local families and maybe have a member of a local Down syndrome group come for a "New parent visit" pop me an email and I'll see if I can match her up with someone that can chat with her, share info, etc.  If she'd prefer we can have someone meet her in person, talk by phone, or email.  You can email me at [email protected] (fvdss stands for fraser valley down syndrome support)  The fvdss is based out of Abbotsford (I'm the Chilliwack contact) and there are also parent groups in Langley, Surrey, Burnaby, and White Rock

 

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Old 04-13-2011, 12:50 AM
 
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Hi Aliy,

 

There's a whole bunch of us moms (and dads, brothers, grandparents) of kids with DS here in Vancouver's Lower Mainland.  My profile pic is of my oldest son who has Down syndrome.  I would recommend you ask your friend to start with the Infant Development Program people.  They came to my home and helped out a lot the whole first five years with physiotherapy, speech therapy, whatever the little guy needs.  Won't cost her a cent either. 604-540-9161 ask for the IDP person for her area. The most I got out of IDP was the parent and tot play groups they used to hold.  I got to meet other families and see lots of kids and babies of all levels of ability with Down Syndrome. They also hold seminars with free childminding to explain how to apply for your child's disability tax credit.

 

Secondly, contact the DSRF - Down Syndrome Research Foundation. 604-444-3773.  Just ask to go on a tour and bring the baby - everybody will be ALL over the new baby!!!  And guess what, they'll treat him like HE is the normal one and everyone else is wacky!  :-)  There is so much to see and learn just from walking around the fascilities and seeing all the people there.  There are people with DS of all ages attending classes there, preschoolers, kindergarteners, teenagers and grown ups.  

 

But having said all that, it did take me all of four years to summon up the courage to get my head out of my ass and out of denial for long enough to actual step a foot inside that building.  So no pressure, just becoming a new parent is hard enough without having to learn a crash course on Down Syndrome.  But do save her a lot of time and take this route, IDP Parent-tot group, then DSRF for the community and support!  There's always success and support in numbers.

 

Good on you for helping your friend!

 

- Sacha

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Old 04-13-2011, 12:51 AM
 
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oops, sorry, still learning this site.

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Old 04-13-2011, 12:52 AM
 
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Hi Aliy,

 

There's a whole bunch of us moms (and dads, brothers, grandparents) of kids with DS here in Vancouver's Lower Mainland.  My profile pic is of my oldest son who has Down syndrome.  I would recommend you ask your friend to start with the Infant Development Program people.  They came to my home and helped out a lot the whole first five years with physiotherapy, speech therapy, whatever the little guy needs.  Won't cost her a cent either. 604-540-9161 ask for the IDP person for her area. The most I got out of IDP was the parent and tot play groups they used to hold.  I got to meet other families and see lots of kids and babies of all levels of ability with Down Syndrome. They also hold seminars with free childminding to explain how to apply for your child's disability tax credit.

 

Secondly, contact the DSRF - Down Syndrome Research Foundation. 604-444-3773.  Just ask to go on a tour and bring the baby - everybody will be ALL over the new baby!!!  And guess what, they'll treat him like HE is the normal one and everyone else is wacky!  :-)  There is so much to see and learn just from walking around the fascilities and seeing all the people there.  There are people with DS of all ages attending classes there, preschoolers, kindergarteners, teenagers and grown ups.  

 

But having said all that, it did take me all of four years to summon up the courage to get my head out of my ass and out of denial for long enough to actual step a foot inside that building.  So no pressure, just becoming a new parent is hard enough without having to learn a crash course on Down Syndrome.  But do save her a lot of time and take this route, IDP Parent-tot group, then DSRF for the community and support!  There's always success and support in numbers.

 

Good on you for helping your friend!

 

- Sacha

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Old 04-13-2011, 12:56 AM
 
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...How does one delete a post?

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Old 04-13-2011, 12:57 AM
 
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Old 04-13-2011, 12:58 AM
 
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Old 04-13-2011, 12:59 AM
 
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Old 04-13-2011, 07:59 PM
 
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Hey Sacha, not sure how to delete a post, sorry.  Maybe if you flag it they can delete it?

 

Katrina

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Old 04-13-2011, 10:08 PM
 
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There is a wonderful , beautiful , blog , by a mom of a one year old with Down Syndrome,  Have your friends check it out, lots of information and beauty.

 

Enjoying the Small Things

www.kellehampton.com

 

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Old 04-16-2011, 12:37 PM
 
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Hi, I have a 3.5 year old dd who has Down syndrome.  She has 3 problems with her heart but luckily she has not had to have surgery & doesn't seem to be affected by them in any way. 

 

Here is a link to a Down syndrome board that I'm sure she will find helpful:http://community.babycenter.com/groups/a315/down_syndrome? 

 

She is welcome to check out my blog that is in my siggy & please pm me if I can be of any help.

 

Tell her congrats for me!

 

 


Laura - proud mom to K -my little wonder with 47 chromosomes - and her 3 amazing big sisters!

My blog - http://downsyndromeupupupandaway.blogspot.com
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