heidi
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Posts: 24
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hello
Apr 17, 2007 8:28:41 GMT
Post by heidi on Apr 17, 2007 8:28:41 GMT
Hi to all of you i have just joined the site from hearing about it thru esp. My name is heidi and my daughter Jess is 6months old and she has down syndrome.
I have joined many forums but they have not found many of them helpful or understanding as no one on them seems to have a child with a disability.
I have just started back at work so i probably will not get on here as much as i would like to but i will try , i look forward to talking to you all and sharing experiences and being able to moan and groan about what life throws at us ! xx
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hello
Apr 17, 2007 9:03:44 GMT
Post by max on Apr 17, 2007 9:03:44 GMT
Hi, nice to meet you - I hope we can be a bit more helpful than other sites! I've found this site a God-send! I have a son who is also 6 months old - when was Jess born?
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heidi
New Member
Posts: 24
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hello
Apr 17, 2007 14:40:36 GMT
Post by heidi on Apr 17, 2007 14:40:36 GMT
Hi Max
Jess was born on the 26/10/06 , when was your son born / did you know your son had downs before he was born or did you find out afterwards , with us it was afterwards , and it was a very difficult thing to deal with at first but as time goes on it gets easier , i suppose you feel the same just take each day as it comes. Jess is coming on really well she isnt floppy so she holds her head very well and has just mastered rolling from her front to her back , but cant do it the other way yet lol , and she is now having a go at sitting up , she finds it funny when she falls forward , i think she thinks its a game ! What is your little boys name ? do you come on this site often ? sorry for all the questions ! and please tell me if i am being to nosey !! when i have worked out how to post pics and that i will put some on , but i am not that clever with these things so you will have to bear with me lol xx
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Apr 17, 2007 16:21:15 GMT
Post by dugarry on Apr 17, 2007 16:21:15 GMT
hello to you, look forward to seeing pics of Jess, we have alittle girl, Kacie, who was born 22 May 06, she has just mastered the art of sitting by herself and is so proud to have done so, lol. Hope to chat more, wherebouts are you from, we are in West Yorkshire
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Apr 17, 2007 16:38:00 GMT
Post by sarahncharlimai on Apr 17, 2007 16:38:00 GMT
hi heidi, welcome to this excellent site i have not long joined myself but have already found it very useful and im sure you will too. I have a daughter who was born 19/06/2006 cant belive she will be 1 soon. We live in stoke-on-trent. Charli is sitting unsupported now also and she loves it. Hope to chat again soon and also to see pics of jess x x
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Apr 17, 2007 20:33:48 GMT
Post by shirley on Apr 17, 2007 20:33:48 GMT
Hi there Heidi, and welcome to the site. You will hopefully find it very helpful as I have done over the last 5 months. My daughter is Grace and she was born 13/11/06, we found out she had a heart defect at 35 weeks and where then told there was a 60% chance she would have DS, that really helped us at the time of finding out for real at 37 weeks when she put in an early appearance. Lookming forward to seeing lots of pictures of jess, just out of curiosity is her name jess or have you shortened jessica?
Shirley x
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Apr 17, 2007 23:05:38 GMT
Post by mrsdavies on Apr 17, 2007 23:05:38 GMT
Welcome Heidi, this site has been invaluable for me, loads of advice and friendly people, hope you enjoy visiting!!!
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heidi
New Member
Posts: 24
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hello
Apr 18, 2007 5:01:49 GMT
Post by heidi on Apr 18, 2007 5:01:49 GMT
hi all ,
dugarry - well done kacie so you should be ptoud of yourself sitting up! Jess is trying to she manages about 20secs then flops to the floor. Jess has just started to roll over from front to back but wont do it the other way yet ! We live near blackpool
Sarah - well done to charli too i bet you are so proud of her , its so nice to see them reach these milestones . And i promise to get some pics of jess on but i might need some help of you all as i am a bit blonde when it comes to things like that !
Hi Shirley - Jess to was born at 37 weeks we didnt know about her downs til 24hrs after she was born , its a long story so will tell another tme! And yes jess is short for Jessica we said we wouldnt shorten it but Jess suits her so much.
Mrs davies - thankyou for your nice welcome i hope i will find the site very useful xx
Ok i am going to make some breakfast and then i am going to try and put some pics on ! Do you all come on here often ??
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Apr 18, 2007 8:06:30 GMT
Post by lizzymd² on Apr 18, 2007 8:06:30 GMT
Hiya
What a gorgeous girl you have. She looks like a bit of a character!
Looking forward to getting to know you and your family.
Lizzy
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heidi
New Member
Posts: 24
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hello
Apr 18, 2007 8:24:33 GMT
Post by heidi on Apr 18, 2007 8:24:33 GMT
hi lizzy
lol is it the cheeky face that gives it away ??
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Apr 18, 2007 9:14:34 GMT
Post by max on Apr 18, 2007 9:14:34 GMT
Awwww she's beautiful! Caleb was born on 21/09/06 so he's almost 7 months now - wow where did the time go?? We didn't know about the downs before he was born and it was terrifying at first - I don't think I've ever been more miserable! However he's so lovely and just gets better each day! The idea of DS was much worse than the reality - he's hardly any different from any "normal" baby - after all what is normal and who knows what the future has in store?? I pop on here everyday just to keep up and to post questions, it's been a real lifeline and I don't feel alone at all now. Jess seems to be doing brilliantly! rolling and trying to sit up - that's earlier than lots of other babies! Caleb can almost sit unsupported now and he can roll but doesn't do it often. He likes to stand ALL THE TIME at the moment but obviously I have to hold his hands so it's a bit time consuming! I really must go and put a signature picture on - everyone else has one!
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heidi
New Member
Posts: 24
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hello
Apr 18, 2007 13:08:30 GMT
Post by heidi on Apr 18, 2007 13:08:30 GMT
Hi max
Caleb is very handsome and looks so proud in his walker , can you tell how do you find the walker are they good , i am wondering whether to get Jess one as like Caleb she loves to be on her feet.
I can understand your emotions when you had caleb we went thru the same and still are , i imagine them emotions will be there for a long while yet. But i wouldnt change jess for the world she a great little girl!
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hello
Apr 18, 2007 13:21:21 GMT
Post by tina79 on Apr 18, 2007 13:21:21 GMT
Hi Heidi, I've only found this site recently too, but have found it so helpful to be able to talk to people in the same situatuion, wish i would have known about it when Brodie was younger as i had so many questions in the begining. Jess is absoloutley gorgeous, you must be so proud of her! x Max -Love the picture of Caleb too, he's a cutie x
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Apr 18, 2007 13:32:34 GMT
Post by Tace on Apr 18, 2007 13:32:34 GMT
Hi Heidi,
Welcome to the site, I think its ace!! Hope you do too, Jess is utterly adorable, and I am very broody at the mo. We have a little boy Leo who is 2 and a little girl Freya who is almost 4. Looking forward to loads more pics and getting to know you and your family.....
Tace x
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Apr 18, 2007 15:25:50 GMT
Post by sarahncharlimai on Apr 18, 2007 15:25:50 GMT
hi heidi, jess is sooooooooooo beautiful she has got a lovely smile and is doing so well. Charli is rolling now onto her front but like jess she cant do it t other way yet but she will get there in her own time. We found out that our baby had ds at 16wks and we were devasted i cried for weeks but then it sunk in i began to feel more positive, but now she is our world and we love her for her, we have bad days like most people but one look at her big smile and it blows all my worrys away. i come on t site everyday i find it very theraputic just to post t odd msg read how other people are etc, charli loves to stand also and i have got a walker that she uses although she only can manage to go backwards at t mom lol, charli's physio said that it would be ok to use one as long as she was not in it all t time, she loves it mind. speak soon luv sarah x x
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heidi
New Member
Posts: 24
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hello
Apr 18, 2007 15:46:44 GMT
Post by heidi on Apr 18, 2007 15:46:44 GMT
Hi sarah , thank you for your comments on jess i wil be getting a big head soon lol. Charli is beautiful and looks so cheeky , she looks like she is really enjoying bath time in that pic ! Jess loves bath time too and likes to go swimming.
When you found out charli had ds at 16 wk was that 16wks pg or 16wks old ?? sorry i am being blonde!! if it was when you were pg , do you think it was better to find out ? could you prepare for it ??
i think i will have to invest in a walker for jess but she is quite short legged lol so probably will not be able to reach the floor yet lol!! The physio we have said she wouldnt recommend one but then i never listen as like you say jess is a baby and i want her to have everything a "normal" baby has , i bought her one of those bumbo chairs as you can ses rom her pic and she adores it , its really helping her with her sitting up but there again our physio doesnt like them ! do you have anymore children , i have a little boy who 6yrs , he adores jess very protective of her. too much sometimes!!
i have just started back at work so jess goes to nursery 2 ull days a week , he seems to be enjoying it , i am hoping that the other children there will help to bring her on.
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Apr 18, 2007 17:45:14 GMT
Post by sarahncharlimai on Apr 18, 2007 17:45:14 GMT
Heidi: Charli loves her bath hates getting out of it haha i try to take her swimming once a week and she seems to enjoy it.
yes i was 16wks pregnant i had t triple test 9routine blood test ) then recived a telephone call saying we had a high risk result could we go up to t local hospital for a talk about t options, so the next day we went t hospital and were told that we could either do nothing and let t pregnancy continue, have a amnio or a more in depth scan that we had to pay for ( can not remember what it was called) but they said it was not as acurate as a amnio, we needed to hurry with a desicion so later that day we decided that we could not go through t rest of t pregnancy not knowing so i had t amnio, at t time we never thought that she would have ds a week later by telephone call we heard what at t time was devastating news that she did have ds. looking back now im defo glad that we found out when we did has it gave us a chance to come to terms with it before she was born and look up information etc also we discovered that she had a heart condition at that time 2 so it meant she was monitiored more closely, what about you are you glad you found out t way you did? I regretted having t amnio afterwards though and would not have another one as the risk of miscarrage is high, im not blaming t hospital but we had to make a desicion so quickly that we did think afterwards all t way through my pregnancy we had made t wrong descion and was scared we would lose her. Sorry rambling on aint i!
About t walker i would do what ever you think is right cause she is your child and at t end of t day proffesionals only advise they cant make your mind up for you.
Charli also has t exact same chair as jess i wanted a purple one but were out of stock charli loves sitting in it and im sure its helped with her sitting. Im sure other children will bring jess on and its so good that she is getting t chance to mix with other children and im sure she will copy what t other children do x x
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Apr 18, 2007 19:43:35 GMT
Post by Tace on Apr 18, 2007 19:43:35 GMT
I quizzed my physio about why they did not recommend a walker for Leo, she said it was because they were unsafe and may tip over and not good to leave baby in them unattended (what kind of parents do they think we all are!?) anyway like you I ignored her and bought one anyway, shop around though as they are all different hieghts some smaller than others at the lowest setting (ours was a mamas and papas).
T x
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Apr 18, 2007 20:03:00 GMT
Post by nikki on Apr 18, 2007 20:03:00 GMT
hi heidi welcome 2 the site its brilliant!!! i love it ive got a little girl georgia and shes 3
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Apr 18, 2007 21:45:02 GMT
Post by mum2rachel on Apr 18, 2007 21:45:02 GMT
Welcome Heidi & Jess, this is a great group to belong to - what a great smile Jess has. Our Rachel was born on 1st Jan 2007.
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heidi
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hello
Apr 19, 2007 5:23:52 GMT
Post by heidi on Apr 19, 2007 5:23:52 GMT
hi Sarah , i am glad you had time to come to terms with Charlis ds before you gave birth it must have been a hlep to get the inormatioon to be prepare. Unfortunatley for us finding out Jess had ds was one of the most traumatic experiences i have yet had to face. When we had jess she was delivered by emerg c-section and apparently it was put straight into the notes that she had ds, but when the paed did the baby exam he told me we had a perfect baby in everyway and i was estatic (did i spell that wrong?) the next day as proud as punch i was sitting with jess when another doctor came to do a baby exam and asked if i knew when she was having the blood test when i asked what for she told me infront of the whole ward - i didnt have my husband with me i just crumpled to the floor, i was devastated and hysterical, i then gott aken to a side room where my husband was called we asked to see another paed and the one the who had told me she was perfect, when asked why he had told me he said because i had family around my bed , no excuse ! then i said why didnt he come back later when there was just me and my husband to which he replied he was to busy and forgot !! to this day we have never had an apology but then we are just nothing to them, our feelings dont matter, evenb thou i had had a emerg c-section i was discharged after 2 days as it was thought to be in our best interests to take jess home and get to know her. We had alot of support from the hospital straight away , but has time as gone on i have had to tell them to lighten it a bit as we just want to get to know our little girl and as i am sure you will agree we all have a life outside of downs.
Hi Tace, thanks for the advice on the walker i think i will have a look round at the weekend , asi am sure Jess would love one and even it shedoesnt get around in it least she will be able to play with toys so it wont be a complete waste of money!
Hi Nikki thanks for the nice wecome to the site i am really getting into already , as you can see its only 6.20 in the morning and i am already here !!
Hi mumtoracheal , i am loving Racheals hat she looks so cute in it , awwww, Jess knows her smile will get her what she wants lol
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Apr 19, 2007 8:17:33 GMT
Post by max on Apr 19, 2007 8:17:33 GMT
That is a horrendous story! I'm so sorry that happened to you. We didn't know about Caleb's ds but we were told in the best way possible. The midwife who delivered him (man called Gary) came up to the ward the next day and took us aside and explained his suspicions. He was really nice and upbeat about it and explained what needed to happen. We stayed in hospital for a week, had a private room and were allowed loads of visitors. OK it was still a difficult time but they did thier best. After we came home though we had no contact, the community midwife hadn't even been told! we just had 1 phonecall from some woman asking if i wanted to discuss labour and "were there still questions about the baby's appearance" which i found a bit insulting! The paed Doctor was a bit floaty and irritating and we've been signed off as Caleb has no health issues. Now however NOTHING has hapened and I feel a bit lost! Still I'll keep pressuring the GP and he's usually very good.
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heidi
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hello
Apr 19, 2007 9:52:52 GMT
Post by heidi on Apr 19, 2007 9:52:52 GMT
hi max , do you not have a child developent centre ? we have the physio and occupational therapist come from there once a month which ok i can cope with that , its the hv i dont like coming round !! jess still sees her paed conslutant he is a lovely man , she only has a slight heart murmur and it doesnt affet her in the slightest. i think i was you woud keep on at your gp to get some kind of help with calebafterall he is entitled to it xx
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lynnie
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Apr 19, 2007 12:04:04 GMT
Post by lynnie on Apr 19, 2007 12:04:04 GMT
Hi Heidi, Jess is gorgeous!!!
Welcome to the site and hope you enjoy meeting us all!!
We didn't know Aaron was Down's until he was born, but I knew as soon as I looked at him, there was something about his eyes which were very round. We were lucky in the way that we were told, they were all nice and sympathetic but not patronising!
Aaron is now 3 and just a proper little boy - last week he was tasting the moss in our back garden ;D
Lynne x
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heidi
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hello
Apr 19, 2007 12:10:57 GMT
Post by heidi on Apr 19, 2007 12:10:57 GMT
Awww lynnie Aaron is lovely , what a great smile he has , think i would have to pass on the moss tasting thou lol. I think we all have very diffrent experiences on how and when we found our children had downs , yes my experience was awful but look at who i got out of it , a beautiful daughter , i couldnt have hoped for more xx
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Apr 19, 2007 21:06:09 GMT
Post by sarahncharlimai on Apr 19, 2007 21:06:09 GMT
you are spot on there heidi we all have such precious children, i can honestly say i would not want to change charli in anyway shape or form, i never realised how strong my feelings would be until she was placed into my arms in the hospital and they have multiplied a thousand times. As i knew before hand i did question would i love her what would she look like i had so many thoughts and feelings through out my pregnancy and not ashamed to say that i went to councilling for a while as i was so lost, if you understand what i mean, but when she was born it was like everything that i had felt and thought just left me i looked at my little baby and realised then that she was everything i could ever wish for and more. We were very well looked after in the hospital i was in a side room then charli went to special care so i had to stay on t ward but i could not leave her side only for eating, meds and toilet as i didnt want to leave her i did not sleep for 3 days then they said i could move down to the family unit so i could be nearer to charli and eventually charli stayed with me from the 5th day until we were disghared on t 9th day all the staff were wonderful and so helpful and we have received lots of support since. I do disagree with the way we were told though by telephone call i took t call then i went to be sick so mark then listened to t rest of t call i will always remember t words Im so sorry to tell you your baby has got ds! not very positive at all but then i suppose there is no easy way of saying that though is there. what a awful thing to have happened to you that is terrible.
Love t new pic of jess she looks sooo cute in that hat, charli has got that bouncer although she does not go in it anymore cause she trys to hang over t side lol Where is it that you live?
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Apr 19, 2007 21:33:36 GMT
Post by jenjane1 on Apr 19, 2007 21:33:36 GMT
Hi heidi and welcome to the board. i have only recently joined as well. My name is jen and I am mum to Alex who is 20 months. Like yourself, I never found out about the DS until 20 mins after he was born. It was a complete shock but now I wouldn't have him any other way, he is a complete character! I am also 13 weeks pregnant with baby number 3 (daughter Danielle is nearly 17).
I don't have a clue how to post pictures, one of these days I will get round to asking!
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heidi
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Apr 20, 2007 4:25:17 GMT
Post by heidi on Apr 20, 2007 4:25:17 GMT
hi Sarah , we live near blackpool , abut 20 mns away in a town called cleveleys , we live about 5 mins walk from the sea front. Its nice and there is quite a few things around us to do ( beach park playing fields cinema) I have to laugh at Jess and Charli having the same bouncer and same bumbo chair - what will be next lol.
Hi jen how are you nice to meet you, i am having an extra early morning on here today its only 5.30 ! having some e time but the children get up , i have 2 Taylor George who is 6yrs and Jessica Louise who is 6months. You willhave to get your pics sorted i can do them but dont ever ask me to explain how to do it htou lol i would probably end up doing it the wrong way ! i am not very good at giving instructions !
Do you all ever meet up , do any of you all live near each other , if you do i bet thats nice in Blackpool i dont think there is a ds group well not that i have found anyway which is a shame , but saying that Jess has an excellent social life already - better than mine lol
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Apr 20, 2007 6:26:16 GMT
Post by Rilith on Apr 20, 2007 6:26:16 GMT
Hiya Heidi Glad you are settling in OK. Jess is SOOOOOOOOOOO CUTE !!! I could eat her up on a buttered roll We were one of the lucky ones too and found out early on in the PG, it helped me a huge amount. As for walkers I found if I got an adjustable height one, the lowest setting was really good for Holly when she was smaller.
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Apr 20, 2007 8:29:45 GMT
Post by sarahncharlimai on Apr 20, 2007 8:29:45 GMT
hi heidi, it must be so nice to live near t sea, funny enough we went to blackpool for a day on easter monday its a shame we didnt speak before we could of met up! we both must have good taste buying t same things for our little one haha. I live stoke-on-trent its not that far away from blackpool, there is a few parks in my area that me n charli visit although she is a little to small for everything there yet lol x x
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