Posted: Tue Jun 22, 2010 11:33 am
ben should be home tommo or thurs at the very latest. he has went since satuarday morning without any breathing episodes so far so good!!
they asked the oh this morning, is there any hip problems in either of our familys. idiot for brains never thought to ask why they were asking, so i got to wait till tonight to find out when i go in my self!!
he has an un natural curve in his spine which is typical of the syndrome too and his chest pallate is a slightly diff shape also typical of the syndrome. so its become not just features everything will still be investigated, he is coming home and the rest is done as an out patients appointment!!
Posted: Sat Jul 03, 2010 10:32 pm
ben is home with us
tests still on going but his genetics one came back all clear. but the said that dont mean he hasnt got this syndrome, which i dont understand. got an appointment on monday to find out more about it all. also his chromosome results came back, he has nothing mission, nothing extra and nothing mutated
Posted: Fri Aug 13, 2010 12:31 am
it appears i need to "inform" people... ben has noonans syndrome...
yep, what that, never heard of it, whats it mean.... keep the oh im so sorrys please.
i have a wonderful support network of other parents with and with children with NS so i didnt feel the need to post it up here and having searched the boards if found not a soul who knows what it is or any one with it
im no fricking liar.... because i never told no one "officially" about the complete set of tests
there you go. now you know
Posted: Fri Aug 13, 2010 8:42 am
It is really good to get involved with other parents. That was the main thing that helped me through the first year or so with my daughter who has Down Syndrome. My area has a toy library for children with special needs and that was really good for us as Shannah got older because they had speech therapists and physios there who could just give some informal advice and you can go and have a coffee or something. Best of luck to you and your little boy.. these things happen and the only thing you can really do is be strong and do the best you can for him and that is not just some sentiment it is from what I've realised with my own child over the years.
Posted: Fri Aug 13, 2010 1:41 pm
I know where this has come from and I would like to inform you of the 'REAL' conversation, and I have others there for back up.
a member: yes we are doing the collection
katie: Is anyone doing one for Laura and ben
member: I thought Ben was in the all clear
Katie: no thats nt what she told me, I don't know whether to tell eeryone or not, she might be mad at me if I told
member: I think maybe you should wait and if she wants to post it she will, she may want to keep it a secret
Katie: well are we doing a collection? you can't do for one and not all
member: well we can't if we don't know what we are collecting for but if she chooses to post herself then I am sure soeone will but its not arranged through askbaby its arranged through FB
Katie: ooh i never knew that
Posted: Fri Aug 13, 2010 3:12 pm
i heard words to that effect.... and from several peoples and it is very very much as you have wrote... nothing more nothing less.
i was just putting the record straight that ben has a diagnosis and i never bothered to put it on here as i am very sure not a soul has a clue about it and i have my own support network of mothers with NS themselves and children... seeing as it was being speculated on or so it appeared. i didnt choose to keep anything "secret" its been on my facebook for a while now
dont turn this into an argument, im done with arguing..