Any other Down Syndrome families out there?

[MyLittleWonders]

We just received confirmation yesterday that dd was born with Ds, so our journey has only begun. I was wondering if there were any other MDC mamas on this journey as well. 

[Guinevere]

Hi there!

Congratulations on the birth of your lovely DD! Our own little chromosomally enhanced sweetie is 4.75 yrs. old now; her diagnosis came as a complete surprise to us, but after navigating those first sad and confusing days where we were trying to find our way into a whole new area of parenting, I can honestly say that Sophie is the absolute best gift I never knew I wanted. She has enriched our family's life in so many ways.

One of the most helpful things anyone said to me in the beginning, when I was so worried about what the future might bring, was that, first and foremost, she was just a baby, and that she would be so much more LIKE our other children than different. And that's been true: she looks like my other children, and she's gone through all the same stages they have, as well, just on her own timeline.

As a matter of fact, just a few minutes ago, she burst into the room where I'm sewing Christmas presents, blond ponytail swinging and demanding, "Mama, read this book! The bears book! Now! Please..." and then, "Merry Christmas, Santy Claus says ho-ho-ho..."

In addition to this wonderful forum, I also post on a message board specifically for parents of kiddos w/DS called downsyn.com which has also been a great source of support and info. over the years.

Merry Christmas and ho-ho-ho from our Sophie to your family!

Kind regards,

Guin

[askew]

Congratulations on your little girl!

I know there are at least a few moms here with Ds kiddos. I have two close friends with Ds girls. They are amazing. My DD has a different genetic error, but it manifests much the same. I think you will find a whole lot of families here with other syndromes, so even if it is not Ds there will be a lot of support for you here. 

http://www.mothering.com/community/forum/thread/1125285/rare-chromosome-disorders-syndromes

[AnalogWife]

I'm not a DS mama, but I still love and bawl over this blog post from Kelle Hampton. http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

She's really talented and gifted and honest, and as a Special Needs mom I like following her blog and having her on my side.

[BeautyforAshes]

I'm a DS mommy too.  My little girl is 2 yrs old.  I'd be glad to answer any questions you might have.  I'm also a member and a BIG fan of downsyn.com  You will find it an amazing place for support and information on your journey--

[jondee0]

I don't post here too often these days, but I have a son with Down syndrome. He's 11 yrs old and is quite the cool kid . I was devastated when he was first born (already having a child with a disability, I never thought we'd have another one), but as Gabe grew and his own self emerged, the pain lessened until it was just a distant memory. I very rarely think about him having Down syndrome now (or autism, his co-diagnosis); he's just Gabe .

Congratulations on the birth of your daughter; she will have much to teach you!

Joni and kids, incl. Michaela , 14, w/a funky spinal cord, and Gabe , 11, w/Down syn. and autism

[ja mama]

I take care of a little boy who is 17 months old.  His parents are awesome, and I'm really blessed to be part of their "family".  My own 2 boys are 8 and 11 and adore him.  It is a beautiful journey.  (He has had some health issues that make us appreciate the regular moments even more)

[MyLittleWonders]

I have a question ... I plan on searching the threads at downsyn, but I'm not sure the "feel" of the board yet. We are a non-vaxing family, but I also understand that we may have to look into it for dd as her system may function differently than our boys'. Do you vax your DS child fully? (We were just told by the pediatrician we went to see that we cannot come if we don't fully vax on schedule, so we are looking for someone else who is open to delayed/selective/non.) You can PM me if you are more comfortable. 

[BeautyforAshes]

My daughter was born with an AV canal heart defect and required open heart surgery at 4 months, so infections could have been deadly for her.  Her cardiologist insisted that she get ALL her vaccinations, and that we get all our flu shots to protect her, as well.  The risks for us outweighed any concern I have about the vaccinations.  There are also some physiological differences that may predispose our little ones to infection, so to me, the vaccinations are just extra "insurance".  I think there are some families on downsyn who delayed/selectively vaccinated, but I'm thinking the majority of them vax fully, for the reasons I mentioned.  You should feel free to post the question there, though--I like to think that we're a pretty diverse but open-minded group

[mombh]

Congratulations!!

The youngest of our 8 kids has ds.  He just turned 2 and is such a delight. I agree with one of the pp that you will see so many ways your lo will be like her siblings and  do regular baby stuff and then toddler stuff etc; Right now my ds is into EVERYTHING, as in being a curious active toddler who loves pulling books off bookshelves, taking everything out the kitchen cabinets, using his sib's crayons, wanting the same song over and over and everything now!!!! His older sibs just love him and give him so much attention.

We also found out that he had ds after a beautiful homebirth. After a difficult star due to low suck he was able to nurse on his own and still does :)

re; the vax subject  is such a personal one and a heated one too....I think even more so with kids who are sn. 

We do not vax and my ds is not vaxed. The ped does  recommend vaxing.....for all my kids not just  my lo with ds.  He is still happy to be our pediatrician and a good one too. I did my own research and found that the reasons that I don't vax my other kids  still stand for ds.  Anyone who doesn't vax needs to do their homework and also learn how and what to do in the event of a child actually contracting one of the diseases. The vaccines arn't a guarantee of not  not contracting the diseases either. my older ds (16)  was at summer camp in another state where a lot of the boys got mumps and most were vaxed, 

So far, my ds has been healthy and besides having bronchiolitis once at age 7 months and one ear infection at 1 year, he has not been sick anymore than my other kids. He has had a few colds and I take extra measures to help his immune system the minute he gets a cold, like SA, herbs and homeopathy etc;

I make sure to feed him a nutrient dense diet with lots of good fats and whole foods :)

wishing you all a beautiful journey together :)