[tri-med] Re: life expectancy

Ditto here . . . And though Soleah has had her share of complications, she has 
fought as well as any "typical" kid would.  In fact, I would say she does 
better because of fast healing and remarkable pain tolerance.  The fact that 
she stays small is a benefit to her and me and does not seem to affect her 
health.
--- On Tue, 3/31/09, Kaufman, Faye <fkaufman@xxxxxxxxxxxxxx> wrote:

From: Kaufman, Faye <fkaufman@xxxxxxxxxxxxxx>
Subject: [tri-med] Re: life expectancy
To: tri-med@xxxxxxxxxxxxx
Date: Tuesday, March 31, 2009, 12:12 PM

What your nurse said is BS.  Morghan is 12 years old 35 lbs and a little
over 3 feet.  No sign of "shutting down".  If Jason does not have any
major health issues why do you think he has an abbreviated life
expectancy?

Faye J. Kaufman
Tax Manager
KSA Industries/Tennessee Titans
713 881-3442
713 881-3421 Fax
fkaufman@xxxxxxxxxxxxxx
 
 

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of SHAMOND73@xxxxxxx
Sent: 03/31/2009 12:08 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: life excpectancy

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=emlcntusnews0000000
3)
>
>
>   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


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                       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

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