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 Groups: Joined: 3/18/2004 Posts: 134
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Hi all,
Our daughter was born 2 weeks ago and has down syndrome. She is our third child and thankfully appears to have good health and so far has been nothing but a bundle of joy! We are living in Dublin and have meet a social worker from St Michael's house already.
We were told our baby had downs shortly after she arrived into the world and we really just accepted it there and then and so far we arent overwhelmed or upset over it - she is too gorgeous to feel anything but joy.
I was just wondering if there are parents out there that want to chat or share experiences - I feel new to this as she is only 2 weeks old but so far the support that seems available is great so I'm taking it day by day!
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Joined: 8/16/2009
Posts: 14
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Hi alias, congrats on your new little girl. Our daughter was born 14 weeks ago with Down Syndrome and like you I find she is a bundle of joy! She is our first and I'm loving every minute. Everyone has been so good and we have had no negative reactions from anyone thankfully. Like you we didn't find out until a couple of minutes after Sophie was born but I'm happier that way. THrilled to hear your lo is doing well. Ours will have to have surgery on a hole in her heart in a couple of months but she is really strong and healthy thank God.
There is great support out there for kids with Downs and you will get free visits from a Physio and in time a Speech Therapist. For the first few months though you just get to enjoy your little girl. Do try to put her on her tummy though a few minutes everyday to strenghthen her neck muscles. I'm sure you have been told this already anyway [:)]. Thanks for starting this thread, it's great to chat to other people in similar situations. Congrats again
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Groups: Joined: 3/18/2004 Posts: 134
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Hi!
Great to hear from you! Thanks for the good wishes, congrats to you on your little one as well!!
How is your little girl eating & sleeping? Our DD is our third and so far is a dream baby compared to our other two monkeys - she eats & sleeps really well which is new to us so happy days!!!
We meet a physio in the maternity hospital before we left and she gave us a few tips about what we can do to help strengthen her muscles so we are doing that for now and we will apparently see a physio when she is about 12 weeks.
We have an appointment with the baby clinic tomorrow to get her blood test results - I think it just explains the type of Downs she has and other bits like her thyroid. She had her hearing checked last week and that was fine - I have an appointment for an eye clinic in early June so thats going to be checked as well. The early intervention program seems really good!
I hope the surgery goes well for Sophie - its just amazing what they do as "routine" these days!! I'm sure you are nervous but she will be fine!!
I'm glad you are enjoying your time with Sophie, your first baby is very special and the time passes way too quickly!!
Thanks again for replying and I'm sure we will get to chat plenty in the future!!
Take care!
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Joined: 8/16/2009
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Hi,
Ya the early intervention programme is great thankfully. Ya the physio came to us when she was 13 weeks old and she will come every month until she is three so it's fantastic.
Sophie eats and sleeps great, we are so lucky. She is a very relaxed baby, she was slow to eat in the beginning but is flying now and she has been sleeping through the night since 6 weeks. She doesn't sleep much during the day but that's grand.
We are dreading the surgery but we will be glad to get it over and done with. It sounds like your lo is flying. Best of luck with the eye test, we haven't had one of them yet, and with the blood test. it doesn't tell you much really but it's good to get it anyway.
Chat soon
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Joined: 7/22/2009
Posts: 26
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Hi Ladies
Lovely to see this thread. I'm on the new mom thread but never felt the need to say that my ds has downs syndrome as he is doing everything all the other babies are. He is 8 mths and flying, like ye I didn't know til he was born, he is my first. It was an enormous shock as you know but the minute I saw him and held him I fell in love and I couldn't see it. He was very strong from the beginning and always very alert, he was sitting on his own from 5&1/2 mths and is rolling from tummy to back and back to tummy now. The early intervention is excellent, we are going to physio since he is about 14wks and we've had a group called communication through music, where we all sat round and sang songs which he loved. We've just stared an occupational therapy group where we will be doing things with self feeding and motor skills etc.
He is an absolute bundle of joy, full of fun and laughter. Sometimes I worry about the future, only because I want the best for him and I want him to have a full and happy life but I have to tell myself just take one day at a time. Anyway I know parents of children without ds also have these worries! Looking forward to hearing more from ye and would be great if some more find this thread.
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Groups: Joined: 3/18/2004 Posts: 134
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Hi Aisb!
Thanks for replying!! Your little man sounds great! Thats wonderful he was sitting up and rolling over so early! Good luck with the occupational therapy group, I'm sure it will go well for him!!
I hear you about the future, but I've decided to take the mind set that no-one knows the future for their children - with or without disabilities and all we can do in the meantime is help all our children achieve as much as they can and cross our fingers they end up healthy & happy in later life!
Our DD is only 3 weeks old but like you said she is doing everything my other two children did at this stage (actually she is doing it better because she sleeps LOL!!)! So its easy to forget at times that she has downs!
Thanks again for replying and I'm sure we will chat again!
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Joined: 8/16/2009
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Hi Aisb! Thanks for posting. It is great to hear from other mother's with babies with ds. Like you I don't feel the need to say that my lo has ds because she is hitting all her milestones the same as any baby at the moment. She is almost able to turn over now so I'm cheering her on every day! I'm taking the same attitude as you and Alias, we can never predict the future for our kids so I'm just going to take each day as it comes and just enjoy her. She is just a little ray of sunshine[:)]. Delighted to hear your little boy is doing so well and that the early intervention is so good. It's a brilliant service. That music group sounds great! Chat again soon. Hope you are enjoying this lovely weather
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Groups: Joined: 3/18/2004 Posts: 134
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http://www.downsed.orgHi guys! Just thought I would let you know that there is a conference being held in Dublin this October coming on DS Education - I'm gong to book myself onto the 1 Day Essential Track (Birth to 5 years) - I think it cost 140 if you book before 7th of July (200 afterwards)! I have no idea if these conferences are any good or not - I'm not promoting it - but I thought it might be worth letting others know! Hope all your little ones are keeping well!
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Joined: 7/7/2010
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Reply:quote:Originally posted by alias123
<br />Hi all,
Our daughter was born 2 weeks ago and has down syndrome. She is our third child and thankfully appears to have good health and so far has been nothing but a bundle of joy! We are living in Dublin and have meet a social worker from St Michael's house already.
We were told our baby had downs shortly after she arrived into the world and we really just accepted it there and then and so far we arent overwhelmed or upset over it - she is too gorgeous to feel anything but joy.
I was just wondering if there are parents out there that want to chat or share experiences - I feel new to this as she is only 2 weeks old but so far the support that seems available is great so I'm taking it day by day!
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Joined: 6/5/2007
Posts: 20
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Hi
Great to see this topic. My Little boy is 2 1/2 and he also has Down Syndrome. We didn't know until he was born either and it was a complete shock. He is the most wonderful little man, he is such a little rascal, he is walking the last couple of months and we are getting fit running around after him and it's brilliant. He is trying to talk now too with the help of Lamh Signing he has around 50 signs so we always know what he wants. You couldn't ask for a better child he is so very very good.
We wouldn't change a hair on his head, so totally head over heels in love with him.
I'm booked in to go to the conference on the Saturday, sounds like it may be useful but also great to meet other parents in the same situation.
Talk soon
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Groups: Joined: 11/5/2008 Posts: 107
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hi all good to see this thread our little scally wag , calum is 15 mths and our little bundle of love hugs and snuggles , like most did not find out he was d.s. till couple mins after birth , cant say we were not shocked but not for long would not change a bit of him , thank god calum has been quiet healthy apart from few coughs and colds the norm with any child . he is doing great sitting and rolling over his new thing now is pushing himself backwards while on his tummy he thinks its great crack lol , he is also standing quiet strong if u give him a bit of support and he just loves been up on his feet, just like his big brother as he cant get enough of him , our early intervention team have been great we have done the lamh signing baby massage and babbling baby class meeting other families and singing and playing , have to say it is a whole new world , like u all we take each day as it comes , well hope tochat to u all soon take care
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Groups: Joined: 3/18/2004 Posts: 134
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Hi Yekim & Lach!
Thanks for posting, its lovely to hear about your boys!! Our DD is nearly 12 weeks now and she is just great! She is a really lively baby with plenty of smiles and just so good!!
I am really interested in the Lamh signing - did you do a course that was organised by your early intervention team or did you organise it yourself? The whole idea of baby signing is growing legs & arms around the world for babies with or without disabilities so I think its brilliant!!
Hopefully that conference might be of some benefit for us - no harm in checking it out anyway!!
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Joined: 7/10/2008
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Hi Girls
Just thought I would drop in on your posts, we found out 4 weeks ago today that our baby will be born with ds. Quiet a shock but have come to terms with it all now, at and the end of the day we are going to have a beautiful baby to bring home. We had been trying for a long time so please god he/she will arrive to us safely. It is great to see how are all doing at this stage and all so positive. I feel at this moment the best thing to do is concerntrate on the baby arriving and sure everything else will fall into place. We will be first time parents so it will be all new and nothing to compare to !! So far so good with baba, when we went for our 'big scan' I just knew something was not right by the doctor, we left that evening with the news that the baby could have a major heart defect and downs, needless to say it was like our world had fallen apart, I have had a great pregnancy so a complete shock. Nothing could of been as bad as that evening, but next day with met with the cardio team and they found the heart to be fine just a very small hole but nothing to worry about so we had the long 5 day wait for the amino results, at the time I thought I would never cope but now all I want is to meet the baby and look after it, nothing could of been as bad as that evening after the scan, we just felt if we could get throught that we can get throught anything.
We have told a few close friends and family and that is it really. We don't feel it necessary to annouce to the world especially when we don't know what is ahead of us. Have a scan in two weeks so quiet anxious to see how the baby is doing and please god all is going well.
Hope you don't mind me asking was nothing picked up on your scans ?
So glad to see you are doing well and makes me feel very positive
x
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Groups: Joined: 3/18/2004 Posts: 134
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Hi Bally13
Firstly huge congratulations on your pregnancy – when are you due??
Its great to hear your little one doesn’t have a major heart defect, although from what I am learning – the heart conditions that babies with DS are born with – many are treatable and operations are done routinely so that’s a relief to many parents.
Our little one doesn’t have any health issues at the moment – her heart and bowls are both fine, her hearing & eyes have been checked and so far her thyroid is fine. Apart from her heart & hearing - everything else will get checked annually which is great. Nothing was picked up in my scan but I think that’s because there wasn’t anything to pick up (apart from DS!!) – I’m 34 and have 2 other kids so I had no reason to ask for an amino and besides I don’t think even the results from an amino are 100% (not sure about that) – so no, we had no reason to think she would be born with DS. But my husband has a cousin who is an adult living with DS and because we know him so well I think that helped. If you aren’t familiar with DS I suppose it can be scary but thankfully we had a short spell where we “grieved” (which is normal & healthy!!) for “what may have been” and then we just accepted it and decided we were lucky to have such a beautiful and health baby.
A lot of my friends have commented on how great it is that we did accept the news so quickly and how positive we are but that’s because we accepted she has DS but we haven’t accepted that anyone knows (including us) what her potential or level of abilities will be. But thats true for any of our children. Things are much more progressive these days and my daughter has the potential to grow up and learn so much and be able for so much – how can that be a bad thing?
http://www.irishtimes.com/newspaper/features/2010/0629/1224273546679.html
This is a lovely story about a girl from the west – don’t get me wrong I wont be disappointed if my daughter doesn’t graduate from Trinity – it just shows that every child with DS is an individual and like we do with all our child we have to help them grow and develop to the best of their abilities!!
Sorry this has turned into such an essay – but one last thing I want to mention – baby blues!! This is your first pregnancy right? Well don’t be fooled by baby blues – they aren’t a sign you are upset or disappointed by the fact your baby has DS – baby blues will have you crying into your cornflakes because a bird flew past the window (i.e. for no reason at all) !! I always warn new mothers about baby blues!!!
Good luck with the rest of your pregnancy and hope we get to chat again!!
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Joined: 6/5/2007
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Hi Bally13
Congratulations on your pregnancy. You sound like you are coping so well with the news that your baby has DS. Nothing was picked up on my scan because my baby had no heart defect thankfully. I have talked to so many parents who had found out their baby had DS when they were pg and all of them have had the same reaction to me when I said I didn't know, which was 'oh poor you' because they were all agreed that they did all their worrying, crying etc beforehand and once they saw their babies everything changed for them. I hope this makes sense.
I was such a mess after my lovely boy was born it took everything out of me, for him not me, but time healed and I fell more and more in love with him by the minute, I wouldn't change a hair on his head he is just adorable.
Someone said to me after he was born, 'It's the only time you will ever be disappointed in in him' I found this the most amazing sentence because it's true. My Older boys and DH have dissappointed me so much in the last 2 1/2 years and I always think of this statement.
I wish you the very best of luck with the rest of your pg, I would love to see your face the day you finally meet you lo.
If you live in dublin and would like to meet my little boy I would be really happy to meet up with you.
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Joined: 6/5/2007
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Sorry Alias123 forgot to say we did our Lamh with our early intervention team, best course I ever did, it is so amazing, my lo never gets frustrated because he can let us know what he needs. So many people were sceptics (grandparents especially) but they are so excited by him, his tiny little hands and he can tell us so much it gorgous.
Great to be able to chat here
Talk soon xxx
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Groups: Joined: 11/5/2008 Posts: 107
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hi Bally 13
congrats on yr pregnancy nothing like a new baby :)
love also to know when u are due , we did not find out through our scns either as calum has no heart probs thank god , calums daddy went to bits but his love for him has been very strong from day one i think he struggled to get over the shock so it affects people in diffrent ways but their will always be one strong one, best of luck with rest of pregnancy , all is great with calum all his check ups have been goodbut he might need his tonsillis and ads done .
he bursting to walk and talk he cant wait to run around with his older brother cant wait for the day myself he even has four teeth now , so even though they start teething later , i feel they catch up , we done our lamh course through our early intervention team also they will be a great support to u and yr family.
chat soon xxx
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Groups: Joined: 11/5/2008 Posts: 107
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Bally 13
just want to send u this little story i got after calum was born, its a nice read, hope u dont mind !!!!!
WELCOME TO HOLLAND
by Emily Perl Kingsley
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 guide books and make your wonderful plans. The coliseum. The Michelangelo David. 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 in 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 must go and buy new guide books. 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".
And the pain of that will never, ever, ever, ever 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 may never be free to enjoy the very special, the very lovely things...about Holland.
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