[tri-med] Re: life excpectancy

Oh Sharon, please do not bother asking these so-called experts what Jason's
life expectancy is.  They CAN'T know!  If he had a specific illness or
condition - say a serious heart complication, or cancer - they MAY be able
to estimate.  But just based on his trisomy?  NO WAY!!!!  Just look at the
incredible differences between the lives of the more common T13 and T18
children.  Some don't survive birth, and some spend many many years on
earth.  Wasn't there a T18 girl who lives well into her 30's??  NO expert
EVER would expect that.
Asking anyone (especially an LPN!!! YIKES!!  She knows next to nothing,
actually she knows less than nothing when it comes to a rare trisomy, YOU
know MUCH more than she!!!!) what his life expectancy is almost like asking
what your own life expectancy is.  Yes, healthy women can live well into
their 80's or 90's or longer!   But too many also die early from all sorts
of things.  NONE of us knows how long we have, and NONE of us knows how long
Jason has.  Even the experts.

Please take care, enjoy TODAY, tomorrow will take care of itself.

Irene

On Tue, Mar 31, 2009 at 1:08 PM, <SHAMOND73@xxxxxxx> wrote:

> Has anyone been able to get any answers on life excpectancy from any of
> their doctors. No one tells me anything, and i am beginning to think it is
> not
> because they don't know. who do you think is the best specialist to ask
> such a
> question. my nurse just told me she thinks Jason will make it until 5 or 6,
> that  when people are so small, and not growing properly their systems just
> start  shutting down. Has anyone heard this before?? She is only an LPN,
> not a
> real RN,  or a doctor, so i am not sure i believe her. Any one have any
> information on  this.
>
>
>
> Sharon
>
>
>
>
>
>
> In a message dated 1/19/2009 1:04:58 P.M. Eastern Standard Time,
> jlvking@xxxxxxxxxxxxxxxxxxx writes:
> I know  there have been reports of people being fired for blogs and things
> like  that where they criticized their employers but I haven't heard of
>  any
> employer checking those things out ahead of time.
>
> Sharon, I  believe you have mentioned in several of your posts why you are
> wanting to  delete a particular post. You have even told when it was
> posted.
> That just  adds another post that mentions what you don't want revealed and
> points to  the original. And then there are the posts where someone replied
> and quoted  your post. Do you realize that you are no longer talking about
> deleting one  post. Just deleting the original wouldn't make a difference
> now.
>
> I  do think you are making yourself worry about something that would
>  probably
> be glossed over. I'm sure there are many of us here that have  thought dark
> thoughts on more than one occasion. This is supposed to be a  place where
> you
> can do that and everyone understands. If your comments were  made out of
> the
> blue in a cooking forum I would wonder about it. But here?  No... you are
> perfectly "normal" given what you are dealing with.
>
> So  while Karen might be able to delete one post it will never really be
> gone.  There are all kinds of archives out there. And again, while she
> might
> be  willing to delete one post she really can't be expected to go through
>  and
> pick out every single post that has a quote of it in the reply. That  would
> be unreasonable to expect from anyone. And if she did then maybe  (the
> hypothetical) Jane Smith, who mentioned her second-cousin-twice  removed
> and
> the affair she is having with her mother's hairdresser's son,  would want
> that post (and the ones referring to it) removed because her  cousin
> doesn't
> know she knows and it just cured to her that she mentioned  the list to her
> mother's hairdresser because of her grandchild's genetic  condition. It's
> just not feasible.
>
> We all had to agree to the  "rules" when we signed up. I'm afraid that this
> is something that will just  have to be let go. I hate to say it but for
> most
> people the things that  they guard so fiercely are the things people want
> to
> find out. You made a  comment. You're feelings have changed. No problem.
> Happens to the best of  us daily!
>
> If you hadn't said anything about the post no one here would  even have
> given
> it a second thought. Now it keeps being brought to mind.  Please, please,
> please don't let it drive you nuts.
>
> -----Original  Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx  [mailto:tri-med-bounce@xxxxxxxxxxxxx]
> On
> Behalf Of Shawn & Tammy  Armstrong
> Sent: Monday, January 19, 2009 12:18 PM
> To:  tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] Re: UPDATE & please  HELP
>
> I worked as an HR Generalist for years for a Fortune 500  company.  I can
> tell you that "googling" your name is not something  that an employer is
> going to waste their time doing.  I have never  heard of a company sitting
> around "googling" peoples names.  There  are probably several hundred or
> even
>
> thousand people that have the same  last name as yours, so it would be
> impossible for anyone to even know it  was actually you.  Legally, any
> company that hires you can only have  access to the personal information
> that
>
> you give them the legal right  to view (drug screening, background
> screening).  It would be illegal  for them to "google" your name and try to
> use some type of  e-mail on  a list-serve against you.  I really think you
> are putting way to much  into this.  I hope you can find some calmness and
> comfort and not let  this continue to worry you.  It's not like your a
> convited  felon.........................don't worry you will be  fine.
>
>
>
> ----- Original Message -----
> From:  <SHAMOND73@xxxxxxx>
> To: <tri-med@xxxxxxxxxxxxx>
> Sent:  Monday, January 19, 2009 10:57 AM
> Subject: [tri-med] UPDATE & please  HELP
>
>
> > hi everyone,
> > I am not sure if you remember, but i  posted a post in August signed with
> > my
> > last name  accidentally. So when you google my name, it pops up
> > immediately.  i
> > was unaware due to my own "spaciness" that these boards could be
>  archived
> > for
> > the world to see. i thought that because there  was a whole password etc,
> > it
> > was  completely private and  only accessible to those who were members, i
> > did
> > not   think that a google could give you access to all the archives of
> >  posts.
> >
> > i have been trying to get just that one post deleted  that contains my
> last
> > name. i have contacted "sue" at   _whiteheads103@xxxxxxxxxxxxxxx
> >  (mailto:whiteheads103@xxxxxxxxxxxxxx)    a number of times. She in
>  return
> > has tried to email,
> > telephone, and contact Karen, who  is the administrator of these boards,
> > but
> > there has been zero  response. She sais that Karen is the only one who
> can
> > delete an email,  or knows how. So basically,  there is nothing she can
> >  do.
> >
> > I would not care if an email of mine showed for the whole  world to see,
> if
> > it did not have such private and confidential  material in it. It talks
> > about
> > abortion, not wanting to be on  earth anymore, depression etc.....i know
> > that
> > when i am going  to be looking for a job in September and my potential
> >  employers
> > google my name, i am "screwed". What i talked about in that  email is no
> > ones
> > business except the people on this board  that i emailed it to. no one is
> > going  to hire me, thinking i am  possibly suicidal or have mental
> > problems!
> >
> > i have to  say that thank g-d, now, i am doing well, i have dealt with
> >  Jasons
> > Trisomy and have come to accept it, and not blame myself, for  what i
> > could
> > have, should have or would have. i thought i was  fine, if i did not want
> > to
> > run my car off the road, but not  wanting to be on earth, i cam look back
> > now
> > and say-  is  pretty bad. compared to how i am now, i look back and see
> >  that,
> > that i was very extremely depressed.
> >
> > Jason is  now doing well, he still has the same issues, feeding, so tiny,
> >  but
> > he is just such a cutie pie. IT still breaks my heart, but i am no
>  longer
> > depressed and have moved on from the initial dissapointemnt,
>  bereavement,
> > depression etc.
> >
> > i was actually pregnant 2  months ago and have since miscarried, but it
> was
> > such a wonderful  time, i was so excited and nervous at the same time,
> but
> > for
> >  the first time since jason was born, i had something to look forward to,
> > and i
> > was EXCITED.
> >
> > in the same token, i am  finally ready to go back to work, and just
> really
> > want this post  deleted. i truly feel it will be used against me, and its
> >  just
> > discrimination and its not fair.-  Does anyone have any  ideas how i
> could
> > accomplish getting rid of that specific post? it is  so unfair that there
> > is  no
> > one in charge of these  boards, no active administrator who can help. If
> > anyone
> > has  any ideas or think of anything, or knows how to get in touch with
> >  Karen,
> > please let me know. i would really appreciate  it.
> >
> > Thanks,
> > Sharon
> > mom to Jason T17m (19  months) and Lauren (3 1/2 yrs  old)
> >
> >  **************Inauguration '09:  Get complete coverage from the
>  nation's
> > capital.
> >  (
> http://news.aol.com/main/politics/inauguration?ncid=emlcntusnews00000003)
> >
> >
> >   Building ___ooOOoo__  Rainbows
> >                   www.trisomyonline.org
> >         Families Helping Families On-line
> >
>
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping  Families On-line
>
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families  On-line
>
>
> **************Worried about job security? Check out the 5 safest jobs in a
> recession.
> (
> http://jobs.aol.com/gallery/growing-job-industries?ncid=emlcntuscare00000003
> )
>
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
>


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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