Hi Patty!
We have a 17 month old son, Jake with Apert Syndrome. We also
have a 3 ½
year old girl named Taylor. We absolutely LOVE this Listserv!!
It's a
great place, whether your 24 or 4. Please don't hesitate to contact
us when
you need a little support. You sound like a wonderful person!
As parents
with young Apert children, we rely on you for your input and insight.
You
are wanted and needed here. Please don't forget that!
Liz, Steve, Taylor and Jake Niemi
-----Original Message-----
From: Patricia
Mc Donald [SMTP:goofy@WCOIL.COM]
Sent: Thursday,
April 22, 1999 12:59 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Searching for a friend
Hello Everyone!
My name is Patty McDonald. I am 24 years old and have Apert
Sydrome. I have just recently joined the list serv,and have found it
very
interesting. I have read many of your letters talking of different
difficulties as well as accomplishments with Aperts! I feel as though
I know
all those with Aperts..I have gone through almost everything they have.
Now
as I'm older I still find it hard sometimes to live with it. Lonliness
and
depression. So I am looking for anyone around my same age to form a
friendship with. If you are interested please e-mail me at goofy@wcoil.com
<mailto:goofy@wcoil.com> would love to hear from you!
Sincerely,
Patty
McDonald-from Ohio
=========================================================================
Date: Thu, 22 Apr 1999
00:57:18 -0500
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: Searching for a friend
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Patty...
Just wanted to say hello and welcome to the group.
I am Mark, 35yr old single person with Aperts.please feel
free to =
email me privately if you wish.
Take care...
Mark
I'd also like to extend a welcome to Susan, glad you and Patty
found =
us.
----------
From: Patricia Mc Donald
Sent: Thursday, April 22, 1999 12:58 AM
To: APERT@LISTSERV.AOL.COM
Subject: Searching for a
friend
<<File: ATT00000.htm>>
Hello Everyone!
My name is Patty McDonald.
I am 24 years old and have Apert =
Sydrome. I have just recently joined the list serv,and have found it
=
very interesting. I have read many of your letters talking of different
=
difficulties as well as accomplishments with Aperts! I feel as though
I =
know all those with Aperts..I have gone through almost everything they
=
have. Now as I'm older I still find it hard sometimes to live with
it. =
Lonliness and depression. So I am looking for anyone around my same
age =
to form a friendship with. If you are interested please e-mail me at
=
goofy@wcoil.com would love to hear from you!=20
Sincerely,
Patty =
McDonald-from Ohio
=========================================================================
Date: Thu, 22 Apr 1999
01:13:31 -0500
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: SHOOTING IN COLORADO
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hello....
I feel along with God being excluded in school, another factor
is the =
programming that is on television these days, parents need to
be much =
more selective about what kids see, as there is alot of violence. The
=
movies etc.. "make it all look cool" when quite obviously, that type
of =
behavior has no place in society.
Mabe a five minute session( quiet time...prayer time..which
ever) both =
at the beginning and at the end of the day at school would be the =
answer, so kids could have time just to think or pray..spending the
time =
quietly, but as they choose.
=20
Mark
=20
----------
From: Chad & Denise Graham
Sent: Wednesday, April 21, 1999 9:01 AM
To: APERT@LISTSERV.AOL.COM
Subject: SHOOTING IN COLORADO
We always have had kids in schools that were not athletes or in the
=
popular
crowd or were even teased by the in-crowd, but they made it through
=
without
violence and they became stronger adults with compassion. I feel
a lot =
of
our problems is we have taken GOD out of our schools! Kids have
no were =
to
turn like prayer. There are many other contributing factors,
but this =
is a
big one. What do you think?
Denise
=========================================================================
Date: Thu, 22 Apr 1999
23:33:47 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: CARLEE'S SURGERY
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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I'm intrested in what they say about the sore today, Email me when you
here,
Nicki, mum and fostermum to 3 great kids,Lachlan 4, jamie 3, (heart
healthy) and Katie 16 months, post fontan for tricuspid atresia, completion
due following Cath sometime after June 1999. Newly diagnosed CDLS,
Reflux,
peg fed, Nissen fundo op end of March.
Awaiting the arrival of little Laura, 16months, Apert syndrome. count
down
has begun!!!!!!!!!!
=========================================================================
Date: Thu, 22 Apr 1999
23:52:57 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Picture exchange
MIME-Version: 1.0
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now that our adoption of Laura is going ahead, we really want to be
involved with the picture exchange, I have listed our address on the
exhange list, I just can't wait to be able to send Laura, first photo
as
our daughter back to you guys, hopefully this will be by the end of
May or
early June.
Nicki, mum and fostermum to 3 great kids,Lachlan 4, jamie 3, (heart
healthy) and Katie 16 months, Awaiting Laura also 16months(apert syndrome)
coming to us though the miracle of adoption.
=========================================================================
Date: Thu, 22 Apr 1999
16:30:39 EDT
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From: GSieb91515@AOL.COM
Subject: Re: We are home early!!
MIME-Version: 1.0
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Thanks so much for the info. Hope everyone is doing better and
that Teeter's
ear infections have healed. Jonathan has tubes in his ears and
the left ear
is draining. It is infected but because he has tubes it doesn't
settle
behind the drum but drains out. It has been a few days now on
the antibiotic
and his ear is still draining. I think it's time to go back in
and take a
better look see.
Anyway, I am going to work on reservations this week end and hope to
get in
at the Crown Reef. Hope they aren't filled up yet. We look
forward to
meeting everyone in person. It's going to be a really special
time for all
of us.
Brenda
Houston
=========================================================================
Date: Thu, 22 Apr 1999
14:42:39 -0700
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From: jeany pak <shuijeanpak@YAHOO.COM>
Subject: Re: Searching for a friend
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Hi'
My name is Jeany Pak I'm 27 year old girl who live in Canada and has
4
sisters and two brothers I'm youngest and the only one has apert's
syndrome.I hope to hear from you soon.
Jeany Pak
--- Patricia Mc Donald <goofy@WCOIL.COM> wrote:
> Hello Everyone!
> My name is
Patty McDonald. I am 24 years
> old and have Apert Sydrome. I have just recently
> joined the list serv,and have found it very
> interesting. I have read many of your letters
> talking of different difficulties as well as
> accomplishments with Aperts! I feel as though I know
> all those with Aperts..I have gone through almost
> everything they have. Now as I'm older I still find
> it hard sometimes to live with it. Lonliness and
> depression. So I am looking for anyone around my
> same age to form a friendship with. If you are
> interested please e-mail me at goofy@wcoil.com would
> love to hear from you!
>
Sincerely,
>
> Patty McDonald-from Ohio
>
<HR>
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=text/html;charset=iso-8859-1 http-equiv=Content-Type>
<META content='"MSHTML 4.72.3110.7"' name=GENERATOR>
</HEAD>
<BODY bgColor=#ffffff>
<DIV><FONT color=#000000 size=2>Hello Everyone!</FONT></DIV>
<DIV><FONT color=#000000
size=2>
My name is Patty McDonald. I am 24 years old and have Apert Sydrome.
I
have just
recently joined the list serv,and have found it very interesting. I
have read
many of your letters talking of different difficulties as well as
accomplishments with Aperts! I feel as though I know all those with
Aperts..I
have gone through almost everything they have. Now as I'm older I still
find it
hard sometimes to live with it. Lonliness and depression. So I am
looking for
anyone around my same age to form a friendship with. If you are
interested
please e-mail me at <A
href="mailto:goofy@wcoil.com">goofy@wcoil.com</A> would
love to hear from you! </FONT></DIV>
<DIV><FONT color=#000000
size=2>
Sincerely,</FONT></DIV>
<DIV><FONT color=#000000
size=2>
Patty McDonald-from Ohio</FONT></DIV></BODY></HTML>
_________________________________________________________
Do You Yahoo!?
Get your free @yahoo.com address at http://mail.yahoo.com
=========================================================================
Date: Thu, 22 Apr 1999
17:51:51 -0700
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Shootings
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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I agree with those who have stated that a lack of religion may be a
factor...but how about GUNS! Until Americans realize that the right
to
bear arms is a MAJOR CONTRIBUTING FACTOR to people getting shot...the
senseless violence will continue. Each day in the USA hundreds of people
are shot..why..people have guns!
I haven't heard one word from the US media...including the President
...that maybe there are too many guns in circulation?
Thank GOD..for Canada's approach to gun control. If you really
care for
your citizens who are dying everyday because of guns....ask your
politicians to reverse a senseless "we must have a gun" attitude that
seems to be so prevelant in the USA!!
You cannot legislate or keep from some nut from doing harm if they
really want to..but perhaps a tighter control on guns would be a start.
If you don't beleive me ...look at the stats between Canada and the
US
on crime, murder and assaults where a gun was used!
=========================================================================
Date: Wed, 21 Apr 1999
19:18:11 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: SHOOTING IN COLORADO
MIME-Version: 1.0
Content-Type: text/plain
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Shocked is a good adjective to use to explain how I am feeling today.
I
feel for you Karin, you live really close to where the shooting took
place. One of my coworkers brought up something I thought about
but
haven't pinpointed how I feel about it. She said the parents
of the
suspects are going to live not only through their grief plus with the
torments from the community. At first I hearing that the suspects
were
killed, I wanted to hold their parents accountable for the crime.
I
forgot they lost too. Then I think about the suspects lifestyles.
What
kind of relationship did they have with their parents?
Earlier this week two parents went to jail here in Ohio for keeping
their
4 children (4-17 years old) locked up and secluded from the outside
world. Along with their nutritional problems and psychological
problems,
the kids cannot speak English. They have developed their own
language.
They have been deprived of their childhood and their life.
Something is wrong somewhere. I believe whole heartily lacking
a
relationship with God is a huge part of the problem.
Joanne
=========================================================================
Date: Thu, 22 Apr 1999
18:41:52 EDT
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From: Dana White <Danabrger@AOL.COM>
Subject: Thank you
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Dear Everyone on the Apert Listserv,
I wanted to take an opportunity to thank each of you for the warm welcome
and
kind notes. I have enjoyed reading the daily digest and the stories
on
Teeter's Page as well as seeing pictures of kids that resemble me in
some
fashion. The stories on the listserv have brought back many memories
for me.
Both good and bad.
While I hated attending all those doctor's appointments and sitting
in those
clinics (which lasted all day), I have to say those were definite
bonding
opportunities for me and mom. She would always treat us to White
Castle
hamburgers when we ventured to sneak away from the clinic knowing my
name
would likely not be called for hours.
I will continue to enjoy reading the digest daily and chime in from
time to
time if I have something to add. After having experience on both
sides of
the health care fence, my advice to each of the parents is to stay
informed,
ask lots of questions, take notes, and don't assume the doctor's are
infallible. I also want to stress the importance of taking care
of
yourselves. For example, if your child is going to the
hospital for
surgery, try not to stay 24/7. Plan a break by having another
family member
or friend stay with your child so you can get an occasional good night
sleep,
a solid meal, shower and do something relaxing to regenerate yourself.
This
is so hard for the families I work with but so very important.
Please feel free to ask questions on the listserv or email me directly.
I
will be honest in my answers. I am in a good place in my life
but it took
love, willpower and lots of tears. My thoughts and prayers are
with you all.
Take care.
Sincerely,
Dana White
Louisville, KY
Danabrger@Aol.com
=========================================================================
Date: Thu, 22 Apr 1999
19:13:07 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: This and That from Guyettes
MIME-Version: 1.0
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Hello out there!
Hey Lisa, I admire your efforts to have stuff ready for Samantha if
and
when she wants it. I wish my parents had some stuff. There
are very few
pictures of me as an infant and almost nothing about what I went through.
I called my pediatrician a few years ago and he sent me some
pictures of
my hands before they separated my thumbs. It's interesting to
me and
gives some degree of identity.
Hello and welcome to the newcomers. My name is Joanne and I'm
34 with
Aperts. Patty, feel free to e-mail me whenever. I can relate
with you
about the loneliness and depression. I hope I can help.
By the way..
I'm in Ohio too! Where are you?
My mom and I are walking in the March of Dimes Walk America. We
are
competing against each other to see who raises the most money.
My goal
is $500.00. I had it at $100.00 but that was almost too easy.
I have a
feeling I'm "cashing in" on my disability. They see me and hear
"March
of Dimes" and wallet comes out. With the risk of being presumptuous
and
having someone yell at me about soliciting.. I am taking any and all
donations I can get. I need the donation by April 30 please.
Hope all is well!
Joanne
=========================================================================
Date: Thu, 22 Apr 1999
19:47:59 EDT
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From: Jenngram@AOL.COM
Subject: Jordans surgery
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I just wanted to ask everyone to say a small prayer tonite for Jordan
(and us
as well) as he is heading BACK in for hand surgery tomorrow morning.
This
will be our final finger release and its to separate and create the
middle
and ring finger on the left hand.
I am nervous, and not sure why....the older he gets the more anxious
I
become...
Thanks in advance for adding us to ya'lls prayer list
Jenn(Tampa/St. Pete)
=========================================================================
Date: Thu, 22 Apr 1999
21:10:13 EDT
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From: Yonstein@AOL.COM
Subject: Re: Jordans surgery
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Jenn:
We wil be sending out prayers for Jordan for a successful surgery and
speedy
recovery. You're probably more nervous because you have 18 different
things
going on with moving and packing and worrying about Jordan.
Take care of yourself, too.
Janine
=========================================================================
Date: Thu, 22 Apr 1999
21:11:52 EDT
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From: Yonstein@AOL.COM
Subject: Re: my son ryan
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HAPPY 5TH BIRTHDAY RYAN!!
Welcome Peck family. We are the Krebs, Brian, Janine Nicholas
and Emily (21
month old with Aperts). We live in New York. I am sure
you will find this
list to be as helpful and informative as we have. It's a great
group of
people.
Best wishes,
Janine Krebs
=========================================================================
Date: Thu, 22 Apr 1999
21:46:04 -0400
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From: foster <foster@ICONTECH.COM>
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Jenn,
We will be praying for Jordan tomorrow and all of the others who are
having
surgery in the up comming weeks. Try to keep your spirits up and soon
this
to will be behind you. Let us know how things go.
Brenda,
Sorry to hear Jonathan is having so much trouble with those ears. When
Billy
had both of his ears infected a few months ago they got so bad that
the
draining was so bad I could not keep up with them. There was even some
blood
streaks mixed in with all of the other yuk. After the first round of
antibiotics they were no better so we took him to an ENT up here who
is a
kind of stand by since his ENT is down Hershey. He said when the ears
get so
bad the antibiotics are not enough and he drained them right there
in his
office and gave him some drops for his ears along with the antibiotics.
I
was worried about the tubes comming out while he suctioned them and
of
course they didn't. What a big difference it made.Within a few days
the
draining was gone. When I took him back they were healed. The ENT said
he
still wanted him to take another week of antibiotics because they have
found
that it seemed to stop them from becomming infected again after they
were so
bad. It worked. he has had a few more since then but no draining. Just
thought maybe it might help you in some way. By the way the antibiotic
was
Augmentin.(not sure of the spelling)
Hope everyone else is well and happy.
Karen(PA)
=========================================================================
Date: Thu, 22 Apr 1999
21:57:52 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Jordans surgery
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Jenn,
We will keep Jordan and your family in our prayers for his upcoming
surgery.
Hope all goes well. When things settle back down, let us know how he
is doing.
Cristy
=========================================================================
Date: Fri, 23 Apr 1999
17:09:25 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: CARLEE'S SURGERY
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Christy
>They gave us some bandages to put on the area, called DuoDerm.
Great stuff - I used to work for the company that developed and marketed
it. Hope it works for Carlee. And you're right to be concerned
about that raised spot.
All the best
Ann
NZ
=========================================================================
Date: Fri, 23 Apr 1999
17:09:30 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Ears'n'Ops'n'Hospitals
Mime-Version: 1.0
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Hi
This ears business is current (and ongoing!) for us. Checked Tuesday morning - wax with blood - off to the GP - grommet blocked. To the specialist Thursday PM - no longer blocked - told off for using cotton buds (cottonwool on end of pliable stick) - thought light infection present, but also tissue regranulating too quickly can be cause of blood with wax - onto steroidal drops instead of antibacterial to slow down the regranulation.
Amy was also told that she is not to yell at Mum when she puts in the eardrops because Mum is only doing what he tells her to. She is to ring him and complain, not complain at Mum.
Isn't it wonderful when the doctors stand up for us!!
Good luck to all those dealing with these issues plus those going in for surgery. Sorry Jenn, I didn't get your message early enough to send best wishes for Jordan's surgery - I trust it has gone well and you will both be back home soon.
And Dana, Howard and I have a routine of me staying in hospital during the week and him during the weekend so that one of us is always with her. During the time she was in hospital for 6+1/2 weeks we had three nights at home together, but that stopped when another mother told me that Amy cried for over two hours one night and the nurses weren't able to placate her. It is a real drain on my emotional and physical energy, but I believe it is the least I can do for her, and hopefully she will be a more secure person through knowing one of us is always available.
Having said that, we have no other children, and I have the sort of job that I can drop for a term when Amy has surgery. I can fully appreciate this issue is not so straightforward for other families.
Re Augmentin (augmented penicillin) - though this was thought to avoid the problems caused by other antibiotics, it appears to cause more. Amy had a rash on it at one time, but as she had been on a range of different things we just didn't use it again for a couple of years and she has been okay with it since then. However, I don't think it is a particularly effective antibiotic.
Regards
Ann
NZ
=========================================================================
Date: Fri, 23 Apr 1999
01:37:35 -0600
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: TENDON TRANSPLANT
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
Hey everyone...I hope you
are all fine! I have a question. Friday
the 30th Daryl is going to have a tendon transplant. We have
continued to
have trouble with his thumbs growing back together after 2 seperations
each. His bones were all fused at the tips and after surgeries
the thumbs
grew back together with the skin grafts. Believe me... I was
very
aggressive in dressings, but after 2 months of re-injuring his hand
I would
have to let it heal without wraps. The doctors say that it is
like that
with the real severe hands sometimes. After discussing our options
of
something new we agreed that we would try the transplant of the extensior
tendon to the side of the wrist to the midshaft of the thumb.
We are
hopefull that this will allow him to have a wide space between his
thumb
and fingers and have some mobility. Has anyone heard of this?
I am under
the ipression that this is the first time it will ever be done on aperts
hands. Let me know what you think.
Dana, I am looking forward
to meeting you and your mom. Do you
need specific directions once into Lexington? If so, let me know.
I have been praying for Jordan
and all of the others that have been
having surgeries lately. Hope Carlee is doing better. I
am sorry I don't
get to respond more, but I do try to keep up with everyone. I
will be
sending out pictures of Daryl soon. Thanks for the pictures you
have sent
already!
God Bless you all!
Denise Graham
=========================================================================
Date: Fri, 23 Apr 1999
19:13:08 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Re: We are getting ready to
Celebrate!!!!!!
Comments: To: GSieb91515@aol.com
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Hi friends,
Tony and I would like to thank everyone for there support with our adoption
of Laura, as yet we haven't had any finale letters, but thats typical
of
our social service system, I suspect we will get a couple of days notice
of
Lauras arrival*smile*
I would also just like to say, Tony and I don't consider ourselves
that
special, its the kids that deserve that praise.
We really think there is a high power at work,, we have been trying
for 4
years to have another baby, but God has other plans! First he sent
us
another wonderful son all be it a foster son, but he has become a major
member of our family, and know his Bio family want us to adopt him,
then
where lent our little treasure Katie, she has taught us soooooo much.
I
totally believe she was sent, to prepare us for Laura, or another child
with special needs (I don't want to get to sure of ourselves until
she's in
our arms). For the list members that have a hard time with this concept,
sorry, I have to admit we to have struggled with God and the whole
religion
thing in our lifes to, But what made me pick up a public phone and
ring the
special needs adoption section, while I was waiting to see one of Katies
doctors one warn Tuesday afternoon!!!!!!!!!!!! Hmmmmmmm And why at
a time
when Laura's SW was the first to answer the call, Something is at work
don't you think.
We are looking forward to become parents again with so much excitement
I
really have a hard time containing my self at times,,, We also know
that we
are entering a life long commitment to Laura, just as you do with any
child. I really don't think we are doing anything that special, We
could
have a Bio child with Apert/special needs etc, and be going in blind,
how
many parents get a Medical report, before the kids are in there arms.
LOL.
Once againg I would like to thank you all for your support, can't wait
to
send those photo's out!!!!!!!!!!
Nicki, mum and fostermum to 3 great kids,Lachlan 4, jamie 3, (heart
healthy) and Katie 16 months, post fontan for tricuspid atresia, CDLS,
etc
etc. Awaiting the arrival of Laura, also 16 months, with Apert syndrome
(
the count down has begun to her adoption)
=========================================================================
Date: Fri, 23 Apr 1999
09:15:59 EDT
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From: Firefli007@AOL.COM
Subject: News and such from Georgia
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Hi!!
Jenny from Georgia here...
WELCOME to all of the new families... This is a wonderful group and
a great
resource for Apert's people!
I am 32, born with Apert's ... can also relate to loneliness and such...
There is a great book out called "Playing the Tuba at Midnight" by
Roberta
Barnes (I Think)
that has helped me get through those rough stages. It's a quick
read and
packed with humor and great advice about "singlehood" and all the schtuff
that goes along with that.
I am also just as shocked and dismayed with goings on of Colorado.
Why
tragedies like this happen overwhelm me with sadness and concern for
our
country.
God bless alll the little ones and their surgeries. I pray that
Teeter is
feeling better and that Don and Cathy are on the mend as well.
I had a sleep study done (FINALLY!!!!) and am going to be fitted for
a C-PAP
machine today. I have always had problems with snoring, and the
study
revealed a "moderate O2 impairment with chronic obstruction of my airway"
The Dr. thinks that a CPAP thingy will do the trick. Anybody
got any advice
about this? Pro's and cons of CPAP? I was really impressed
by this Doc as
ghe actually knew what Apert's was and I didn't have to go through
the whole
schpeeel over and over again.
God Bless Have a GREAT weeekend everybody.... can't wait for June!!!
Jenny in Georgia
Have a great weekend everyubody.
=========================================================================
Date: Thu, 22 Apr 1999
19:31:36 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: This and That from Guyettes
MIME-Version: 1.0
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Joanne,
My family is also walking in the March of Dimes Wonderwalk this Sunday
here
in Minnesota. This was something we started even before Jake
was born (he's
17 months now). I HAVE reached $500.00 !!! I'm not sure
of the reaction
I'll get to Jake on Sunday, but I don't care. I'm excited and
I really feel
it's such a great thing to experience with our children. I'm
happy to hear
of others involved in this wonderful event!!
Liz Niemi and Family
-----Original Message-----
From: J. G.
Lindamood [SMTP:chanan8@JUNO.COM]
Sent: Thursday,
April 22, 1999 2:13 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: This and That from Guyettes
Hello out there!
Hey Lisa, I admire your efforts
to have stuff ready for Samantha if
and
when she wants it.
I wish my parents had some stuff. There are
very few
pictures of me as an infant
and almost nothing about what I went
through.
I called my pediatrician
a few years ago and he sent me some
pictures of
my hands before they separated
my thumbs. It's interesting to me
and
gives some degree of identity.
Hello and welcome to the
newcomers. My name is Joanne and I'm 34
with
Aperts. Patty, feel
free to e-mail me whenever. I can relate with
you
about the loneliness and
depression. I hope I can help. By the
way..
I'm in Ohio too! Where
are you?
My mom and I are walking
in the March of Dimes Walk America. We are
competing against each other
to see who raises the most money. My
goal
is $500.00. I had
it at $100.00 but that was almost too easy. I
have a
feeling I'm "cashing in"
on my disability. They see me and hear
"March
of Dimes" and wallet comes
out. With the risk of being presumptuous
and
having someone yell at me
about soliciting.. I am taking any and all
donations I can get. I need
the donation by April 30 please.
Hope all is well!
Joanne
=========================================================================
Date: Fri, 23 Apr 1999
10:43:11 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Shootings
MIME-Version: 1.0
Content-Type: text/plain
I am fairly neutral on the subject of gun ownership. I do not
own any
guns. Yes there are lunatics who own guns and misuse them, but
there
are also thousands of responsible gun owners who should not lose their
privleges because of the acts of others. I look at even larger
acts of
senseless violence that do not involve guns - consider the Oklahoma
City
bombing - no guns used - must we now seek to ban fertilizer and diesel
fuel? The bottom line in my mind is that responsibility lies
with the
parents. The buck stops there.
> -----Original Message-----
> From: Robin MacDonald [SMTP:macdonal@GOLDEN.NET]
> Sent: Thursday, April 22, 1999 8:52 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Shootings
>
> I agree with those who have stated that a lack of religion may be
a
> factor...but how about GUNS! Until Americans realize that the right
to
> bear arms is a MAJOR CONTRIBUTING FACTOR to people getting shot...the
> senseless violence will continue. Each day in the USA hundreds of
> people
> are shot..why..people have guns!
>
> I haven't heard one word from the US media...including the President
> ...that maybe there are too many guns in circulation?
>
> Thank GOD..for Canada's approach to gun control. If you really
care
> for
> your citizens who are dying everyday because of guns....ask your
> politicians to reverse a senseless "we must have a gun" attitude
that
> seems to be so prevelant in the USA!!
>
> You cannot legislate or keep from some nut from doing harm if they
> really want to..but perhaps a tighter control on guns would be a
> start.
>
> If you don't beleive me ...look at the stats between Canada and the
US
> on crime, murder and assaults where a gun was used!
=========================================================================
Date: Fri, 23 Apr 1999
12:35:44 EDT
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From: Sandra Jones
<AJones7692@AOL.COM>
Subject: Re: Thanks
MIME-Version: 1.0
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Hi Every one ,
Thanks for all the welcome messages, I really nice to read all the messages,
it helps to know that ther are other people out there is the situation.
Is it a regular problem with Aperts to have ear problems? Richard
has been
having ear problems since he was born, he's had grometts twice he now
has to
wear 2 hearing aids .
Its terriable about the shooting in Colorado, i'm glad we have such
a good
gun law over here, its almost impossible for kids to get any
kind of gun. We
had one incedent a few years ago where a man entered a nursery
school and
shot 16 children and their teacher
it shocked the whole country . My thoughts are with all the people
in
Colarado .
Richards Doctor have said they will be doing surgery on his mid face
etc when
he's 11yrs old at what age do they operate where you are?
Best wishes to everyone,
The Jones Family
=========================================================================
Date: Fri, 23 Apr 1999
13:01:58 -0500
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: News and such from Georgia
MIME-Version: 1.0
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Hi Jenny....
As an owner and user of a CPAP...her's my views on it...
One of the best things about it, in my opinion, it alowed me
to go =
without surgery to have my airway "widened", as the machine itself
is a =
much cheaper alternative.It's pretty easy to get used to.(having it
on =
at night)
A major drawback, however, you must obviously sleep where there
is =
electricity...and if your sinuses get stuffed occasionally, as mine
do, =
it's useless.( It'd be a very good idea to have so fast acting sinus
=
medication on hand) It is soley dependant on breatheing thru your =
nose.If you have to have surgery for anything, your apnia has to be
=
addressed at that time also, as I had hernia surgery a coupleyears
ago, =
they had to put a tube down my throat,(done after I was put to sleep
for =
the surgery, and removed before I woke up) which to me, was no big
deal, =
sounded MUCH worse than it ended up being..I had no problems after
with =
a sore throat, or anything associated..but gotta admit I was scared
to =
death over the thought of having a tube in my throat.
The CPAP has parts that must be replaced occasionally, The mask,
=
harness, hose from the machine to the mask.. can all wear out..It's
not =
cheap to replace them, but not that bad either.The last time I replaced
=
everything, it cost around $120.
Hope I helped you...Have any more questions, feel free to ask,
you may =
also email me privately also if you wish.
Take care...
Mark
----------
From: Firefli007@AOL.COM
Sent: Friday, April 23, 1999 8:15 AM
To: APERT@LISTSERV.AOL.COM
Subject: News and such from
Georgia
Hi!!
Jenny from Georgia here...
WELCOME to all of the new families... This is a wonderful group and
a =
great
resource for Apert's people!
I am 32, born with Apert's ... can also relate to loneliness and such...
There is a great book out called "Playing the Tuba at Midnight" by
=
Roberta
Barnes (I Think)
that has helped me get through those rough stages. It's a quick
read =
and
packed with humor and great advice about "singlehood" and all the =
=========================================================================
Date: Fri, 23 Apr 1999
14:48:05 -0400
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From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Midface and sleep apnea
MIME-Version: 1.0
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Hi everyone! We've been remodeling 2 bedrooms this week so I've
not been
reading the email too well (had 90 msgs when I checked today!) I hope
all
who are having surgery are doing well. Sara Younkin also had
a sleep study
done last week--we've been saying for months that she's working too
hard at
night to breathe. At 2AM during the study the tech came in to
put her on
O2. He said that she has episodes where her sats are down in
the 70's. Her
doc went over the results with me in the morning. Apparently
she not only
has episodes of obstructive apnea but also something called hypopnea(sp?)
which as I understood it is when she would relax in REM sleep her muscle
tone was not enough at times to breathe effectively. Bottom line
is, she
needs more O2 at night or she's at severe risk for pulmonary hypertension.
None of us thought she'd tolerate the CPAP so for now we're using nasal
prongs to bring her baseline up so when she desats she doesn't go as
far
down. He seems to feel that her best bet is a midface as soon
as her
surgeon can arrange it--which we weren't planning on having to deal
with
until at least next year. So we're off to Children's Hospital
of
Philadelphia on 5/6 to make the arrangements. Hope everyone is
well! Kelly
=========================================================================
Date: Fri, 23 Apr 1999
18:51:29 EDT
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From: Jenngram@AOL.COM
Subject: Jordans surgery, midfaces and
shootings
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Well, thanks so much for the thoughts and prayers for Jordan. he came
through
like a trooper, got home at a Peanut Butter and Jelly sandwich, played,
ate
some tasty treats from Boston Market (chicken, sweet potatoes, creamed
spinich for iron of course and cornbread) then fell fast to sleep by
6:30........so far on regular tylenol, but the strong stuff is standing
buy
for tonite if he needs it.
Surgey itself was a success, and we FINALLY hae all 10 fingers completly
separated!!!! Hopefully, we'll get to take a breather for a while....at
least
until we get moved to Columbus and can find some new docs!!!
Good Luck to Emily next week on her surgery, and any others my fatigue
brain
can't think of at the moment. Our thoughts are also witha ll of ya'll
dealing
with mid-face surgery decisions.....these choices come around far too
often
As for the shooting, who can even begin to make any sense of it. All
I can
imagine is that these two boys had some real problems; that people
found it
was easier to look the other way as opposed to addressing them. How
a
teenager can build an arsenol of weapons in their own garage and no
one ever
went out there to say hello, and see what their kids were up to amazes
me.
But then nothing should amaze anyone anymore. As triumph as our children
here
prove to turn out to be, a handful of others turn in the wrong direction.
As
my husband said last night, "Kinnda makes you really wonder what "normal"
is
anymore." If thats normal, I'll take my "abnormal", loving, caring,
considerate of others child anyday of the week.
As for gun control, I don't know what the answer is on that one. I don't
have
one, and will not allow one in the house as long as their are children
present. Its a very personal decision, and hopefully all parents choose
based
on the good of their children. I would rather a burgular come in and
shoot
me, then have Jordan get a hold of a gun and accidently shoot himself,
or
someone else. Its a risk I am willing to take. Some are not.
And theres my 2 cents worth, or rather 2 dollars worth
Thanks again for thnking of Jordan today
Jenn(Tampa/St. Pete)
=========================================================================
Date: Fri, 23 Apr 1999
16:00:55 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: CARLEE'S SURGERY
MIME-Version: 1.0
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Christy and Carlee,
Glad to hear everything went well. I got Carlee's pictures in the mail
today. What a cutie. I will try to send you a picture soon.
Kelly Spadini
=========================================================================
Date: Fri, 23 Apr 1999
15:58:53 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: my son ryan
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Hi Susan,
My name is Kelly Spadini. I am 17 years old from California. I have
had
a lot of surgeries just like Ryan has had. Wow fracturing his arms
at
the elbows sounds very painful. I have been through pretty much
everything you can expect a "different" person to go through so if
you
have any questions jus ask. I don't really know what to tell you about
his elbows but I know you will get plenty of advice from other people.
Kelly
=========================================================================
Date: Fri, 23 Apr 1999
16:18:14 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Searching for a friend
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Hi Patty,
My name is Kelly Spadini. I am 17 years old with Aperts Syndrome. I
have
been through just about everything that you'd expect a "different"
person. Fortunately I have been accepted at school and I
have a
wonderful group of friends who I'd be lost without. I get depressed
sometime and ask myself "Why did this have to happen to me?". Most
of
the time, I try not to think that way. I set high goals for myself
and
feel great when I achieve them. My friends never laughat me and I know
I
always have the beside me. I honestly think having Apert Syndrome and
going through all that I have gone through has made me a better person.
I love the listserve, although I lurk more that I write. I am so glad
this is available for new parents. As far as I know, all my parents
got
when I was born was photocopied pages from a book.
I look forward to hearing from you soon.
Kelly
=========================================================================
Date: Fri, 23 Apr 1999
16:24:32 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Jordans surgery
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Jenn,
I'll be thinking about Jordan. Please let us know how everything goes.
Hope all goes well.
Kelly in California
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Date: Fri, 23 Apr 1999
20:48:33 -0400
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: We are home early!!
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Hi Brenda:
Hope the antibiotic is working on Jonathan's ear.
Just wanted to know the dates on the get away to Myrtle Beach. I have
a
friend who is interested and I haven't keep track of it since we are
expecting twins in May, and we won't be doing much traveling. Our daughter
Michelle is 8 and has Aperts, she is very excited about being a big
sister.
Welcome Patty & Susan.
Jordan is in our prayers.
Thanks again.
Martha Bradley
Algonquin, IL
=========================================================================
Date: Fri, 23 Apr 1999
22:27:21 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Searching for a friend
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HI PATTY, WHERE IN OHIO DO YOU LIVE? I'M FORMALLY FROM WEST FARMINGTON
IN
NORTHEASTERN OHIO, ABOUT 75 MILES FROM CLEVELAND.
I NOW LIVE IN FLORIDA
AND HAVE FOR ALMOST 40 YRS. MY DAUGHTER-IN-LAW SAID SHE WROTE YOU,
HER NAME
IS CRISTY AND THEY HAVE A DAUGHTER WITH APERTS NAMED CARLEE. CRISTY
IS A GOOD
PERSON TO HAVE FOR A FRIEND. HOPE YOU TO GET ALONG. YOUR NEW FRIEND
MARILYN
=========================================================================
Date: Fri, 23 Apr 1999
22:59:00 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: CARLEE'S SURGERY
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KELLY,
CARLEE AND I WOULD LOVE A PICTURE. CARLEE IS DOING GREAT, AFTER HER
FIRST
CRANIAL SURGERY.
LOVE,
CRISTY AND CARLEE
IN FLORIDA
=========================================================================
Date: Fri, 23 Apr 1999
22:06:57 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: "A New Baby To Love"
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Hello everyone! I was going through and updating some of Jake's
things in
his baby book, and came across this card which was given to us by Jake's
great Aunt right after he was born. It brings tears to my eyes
everytime I
read it. I thought I'd share it with you because I know many
of you can
relate. Hope you enjoy and cherish it as I do!
Liz Niemi & Family
"A New Baby To Love"
"All children need love, understanding, and care, someone they can count
on
to always be there...
But God knew some children would need more than others, and that's why
He
chose special fathers and mothers.
They have unique challenges right from the start, so the Lord holds
these
families close to His heart.
He gives them His strength and the patience to wait...they learn that
small
steps bring rewards that are great...
And they come to know joys that they'd never dreamed of, when their
hearts
have been touched by a special child's love!"
=========================================================================
Date: Fri, 23 Apr 1999
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From: JobeCST@AOL.COM
Subject: my computer works now
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Hello Shirley Tanner,
My name is Stacey Jobe (Tyler's mother) we met in Dallas the other day.
I
hope Collin and you came threw your apointments just fine!
Tyler's doing
great we have all five finger's on both hands and were just waiting
and
praying they will heal really fast. Those bandages really get
in his way.
He's also getting very moody. You can't sit him on a table, hold
his hands,
or go in to a room with a tile floor with out him throwing a walleyed
fit,
because I sit him on a table to change his bandages, he does
not like to be
restrained and his doc. office has a tile floor. Is he smart or what!
I read a e-mail from somebody asking about a second opinion! Well
Tyler's
hand surgeon that did all three of Tyler's hand surgery's was the second
opinion. Dr. Genecov in Dallas has done the best job. Of
cource all the
credit goes to the Lord because he was bathed in prayer the hole time
he was
cutting on Tyler. Genecov seperated Tyler's Thumb and little
finger first,
then the ring , and on April 8th his middle and pointing fingers
had grew
enough he was able to successfully seperate them. Tyler hand
the rosebud
hands with a solid finger nail across the middle three fingers.
I'm going to
try to get picture's out to everybody.
It depends from person to person on what I tell them about Tyler's
condition. I have more trouble with older adult drilling
me with question.
I know there just nosey or concerned, but when you have had a long
day of
appointments and your tired of chasing your son it's hard to be nice.
But, I
do answer there questions honestly and just tell them that the lord
has great
things planned for my wonderful little boy. He's already changing
my hard
headed daddy. Well i think i've typed to much already, good night
Stacey Jobe (Tyler's mom) 18 months
Cisco, TX
=========================================================================
Date: Fri, 23 Apr 1999
23:20:14 EDT
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From: JobeCST@AOL.COM
Subject: Re: "A New Baby To Love"
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Thank you for sharing this. I see that love everytime Tyler looks at
me
=========================================================================
Date: Sat, 24 Apr 1999
01:02:08 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: Searching for a friend
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Hi Jeany, my name is Mary and I do not have Apert per se. I have
a cleft
palate. I live in Florida and have one sister. She is normal
and she live
in Florida. I had multiple surgeries to correct my cleft.
I also had one
surgery to reconstruct my face. Hope to hear from you and you
can e-mail me
privately if you want. Mary
=========================================================================
Date: Sat, 24 Apr 1999
17:40:08 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Shootings
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I hear you Don, but you've got to admit that if there were no guns then this sort of things wouldn't happen - not with guns anyway, they would probably create something else.
>The bottom line in my mind is that responsibility lies with the
>parents. The buck stops there.
In NZ not long ago it did. The father didn't secure his gun cabinet and he and a number of others were killed by his son. The Mental Health services are again under review, but it is not an area that gets a lot of funding.
The Tasmania situation wasn't "just" a regular kid gone crazy either, there has got to be something else going on to make the gunman (isn't it interesting how it isn't ever "gunwoman") go on his rampage. A loved child from a secure background without glitches in his/her genetic mental makeup isn't likely to do this sort of horrific action.
Another ghastly tragedy and I have had to avoid the TV news all week. That AND Kosovo is just too much for me to handle.
Regards
Ann
NZ
=========================================================================
Date: Sat, 24 Apr 1999
08:07:18 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: my computer works now
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Hi Stacey,
So glad you remembered our names & that
we are on the listserv. It was
so nice meeting & talking with you guys at the hospital!
After setting off I
told Larry I wished I had gotten your names/address, etc. My
memory is
really bad!
Happy to hear Tyler has 10 digits now!!
He is such a cutie! I remember
how bad Collin was with taking his bandages off. We were constantly
putting
them back on & trying to figure out how to put them on so he couldn't
get
them off. I think we finally put adult size "tube socks" over
the bandages
that went all the way up his arms & legs (we had toes done at the
same time)
& then safety pinned the top to his shirt sleeve to keep them from
coming
off. It helped & kept the bandages cleaner too. Just had to watch
for
sweating underneath. We didn't have any problems there though.
Collin was
still a Hudini sometimes! You will get very good at "dressings".
:)
Our appointments were hectic to say the least.
The orthodontist was the
worst! The CAT scan went fine after they gave him the "goofy juice".
He
didn't care what they did! All the others were pretty uneventful.
Out trip
back was another 14 hours ride and VERY long. We were all happy
to be back
in our own beds that night. Next time we are going to go a day
or two early
for our bodies & minds to rest before doctor appts. begin.
We will probably
be travelling back down about May 28th. Surgery is on June 2nd for
his
mid-face/RED placement. Trying not to worry about it right now
though.
Have you placed your address on the "address
page"? I am still working
on sending out pictures to everyone. Have been very busy since our
return. My
husbands sister, husband & 3 kids came to visit (are still here)
and my
Mother in law, other sister & brother-in-law, their daughter &
4 children
came Thursday for the day. I promise to get those pictures of
my cutie out
soon!!
I am showing off the pictures of Seth, Emily
and Carlee that I have rcvd
so far! Thanks - they are all beautiful kids! Looking forward
to getting
more.
Gotta go for now.
Take care all,
Shirley
=========================================================================
Date: Sat, 24 Apr 1999
11:26:49 EDT
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From: Dana White <Danabrger@AOL.COM>
Subject: Coming to Lexington
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Denise,
Where will Daryl's surgery be performed? I am not that familiar
with
Lexington but I am sure someone around here can give me directions.
We will
be coming from 64East. Mom and I are looking forward to meeting
you as well.
Will keep Daryl in our prayers for a smooth surgery and speedy
recovery!
As far as tubes in the ears.
I believe I had 4-5 sets of tubes. Those things seemed to fall
out so
easily. (They looked like a microscopic spool for thread).
After my last
set (age 9), the doctors decided I had quite a bit of scar tissue (from
the
multiple surgeries to place the tubes) and would not put any more in.
I do
have hearing loss, supposedly secondary to the scar tissue, but not
severe
enough to need hearing aids. I haven't had my hearing checked
in about ten
years.
Sincerely,
Dana
Louisville, KY
Danabrger@aol.com
=========================================================================
Date: Sat, 24 Apr 1999
17:48:44 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Hannah Brown
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_001D_01BE8E7A.B2EA33C0"
This is a multi-part message in MIME format.
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Hi,
I spoke to Martha Bradley's friend today about the beach trip and she
is =
going to try to join us.
Her name is Lauri Brown, and her daughter is Hannah, nine years old
with =
aperts plus trach.
She hopes to have her husband convinced very soon about getting online.
In the meantime she would like to be on the picture exchange,
I have =
added her and Don should have her added soon.
I will add her here as well.
Lauri Brown
912 Ski Hill Rd.
Fox River Grove, Il. 60021
Daughter Hannah age 9 with aperts.
She is really excited about what Don has created. She really wants
to =
be a part of our "elite" club.
She has also been to several Faces events so maybe she will also have
=
alot to share with us!!
I have to take Nick to the orthodonist on May 7 and she and Hannah are
=
planning on joining us for lunch after Nick's appt.
Laurie Bailey, are you still with us??????? Didn' you meet
her at one =
time??
Things are good here. Nick is excited. His Dad is coming home
next Sat =
for five days and will be here Nick's Ninth birthday on May 3. He will
=
really be excited when his dad comes home for a month in June!!!
Me too.
I am tired of being alone so much!!
guess I had better run, have to fax Lauri a copy of the picture exchange
=
list. Which reminds me.
I plan to take some pics then Bill gets home. I will set
the self =
timer on the camera and try to get a decent family pic to send out.
Judy
jamerman@uti.com
------=_NextPart_000_001D_01BE8E7A.B2EA33C0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>Hi,</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I spoke to Martha Bradley's
friend =
today about the=20
beach trip and she is going to try to join us.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Her name is Lauri Brown, and
her =
daughter is=20
Hannah, nine years old with aperts plus trach.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>She hopes to have her husband
convinced =
very soon=20
about getting online.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>In the meantime she would like
to be on =
the picture=20
exchange, I have added her and Don should have her added=20
soon.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I will add her here
as =
well.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Lauri Brown</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>912 Ski Hill Rd.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Fox River Grove, Il. 60021</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Daughter Hannah age 9 with =
aperts.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>She is really excited about
what Don =
has=20
created. She really wants to be a part of our "elite" =20
club.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>She has also been to several
Faces =
events so maybe=20
she will also have alot to share with us!!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>I have to take Nick to the orthodonist
=
on May 7 and=20
she and Hannah are planning on joining us for lunch after Nick's=20
appt.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Laurie Bailey, are you still
with=20
us??????? Didn' you meet her at one time??</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Things are good here. Nick is
=
excited. His=20
Dad is coming home next Sat for five days and will be here Nick's Ninth
=
birthday=20
on May 3. He will really be excited when his dad comes home for a month
=
in=20
June!!!</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Me too.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>I am tired of being alone so
=
much!!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>guess I had better run, have
to fax =
Lauri a copy of=20
the picture exchange list. Which reminds me.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>I plan to take some pics
then =
Bill gets=20
home. I will set the self timer on the camera and try to
get a =
decent=20
family pic to send out.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
------=_NextPart_000_001D_01BE8E7A.B2EA33C0--
=========================================================================
Date: Sat, 24 Apr 1999
20:52:08 -0400
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From: The Stroupes
<stroupes@MINDSPRING.COM>
Subject: Re: TENDON TRANSPLANT
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Hi Denise,
Zach's hand doc has mentioned this to us. Zach has a thumb and
3 "digits"
on each hand and some work better and different than others.
He is quite
good at doing the vulcan peace sign. His doc has mentioned doing this
in the
future the same as you mentioned. I did not ask alot of questions because
had digit seperation on his left hand 2 wks ago so I wasn't real interested
in hearing about more surgery so soon after this one. It sounded
quite
simple and not a big surgery in the scheme of things. After
Daryl had his
thumbs released, did they put splints on to keep the thumbs away from
the
hand? Zach got them almost immediately and wore them daily for
a week and
then every night for several months. Let me Know.
Judy Stroupe
-----Original Message-----
From: Chad & Denise Graham <cgraham@INFOAVE.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Friday, April 23, 1999 3:17 AM
Subject: TENDON TRANSPLANT
> Hey everyone...I hope you
are all fine! I have a question. Friday
>the 30th Daryl is going to have a tendon transplant. We have
continued to
>have trouble with his thumbs growing back together after 2 seperations
>each. His bones were all fused at the tips and after surgeries
the thumbs
>grew back together with the skin grafts. Believe me... I was
very
>aggressive in dressings, but after 2 months of re-injuring his hand
I would
>have to let it heal without wraps. The doctors say that it is
like that
>with the real severe hands sometimes. After discussing our options
of
>something new we agreed that we would try the transplant of the extensior
>tendon to the side of the wrist to the midshaft of the thumb.
We are
>hopefull that this will allow him to have a wide space between his
thumb
>and fingers and have some mobility. Has anyone heard of this?
I am under
>the ipression that this is the first time it will ever be done on
aperts
>hands. Let me know what you think.
>
> Dana, I am looking forward
to meeting you and your mom. Do you
>need specific directions once into Lexington? If so, let me
know.
>
> I have been praying for
Jordan and all of the others that have been
>having surgeries lately. Hope Carlee is doing better.
I am sorry I don't
>get to respond more, but I do try to keep up with everyone.
I will be
>sending out pictures of Daryl soon. Thanks for the pictures
you have sent
>already!
>God Bless you all!
>
>
>
Denise Graham
=========================================================================
Date: Sun, 25 Apr 1999
01:11:33 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Compuer Questions
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Hi Everyone,
Does anyone know about the following:
When I look at the kids pictures off of Teeter's page I only get
one photo
of each. The rest are boxes with another little box on the corner.
I try to
click the little boxes but I get nothing. Also on Teeter's page
I get a
picture here and there and then a bunch of those little boxes.
(Hope this
makes sense).
Also I've only been able to register to the chat room, but can never
find how
to get on. I click on Chat now, but nothing seems to happen
Is everyone
else able to get to the chat room? Does anyone still do
the Sunday AOL?
Thanks for your help in advance,
Love, Lisa (Samantha 5 1/2 mo mom)
=========================================================================
Date: Sun, 25 Apr 1999
09:01:13 -0500
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: RED System Results
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Hi all...Just wanted to let everyone know that Talitha underwent a LeForte
III with the RED System on Monday, April 19th, in Dallas. We
got discharged
from the hospital on FRIDAY!! Her recovery was excellent!!!
I can't begin
to describe the change in her appearance! She's happy, we're
happy...I
can't express enough the success we've seen with this device!
It's
absolutely fantastic!! We were the 13th patient of Dr. Fearon
to undergo
this procedure. We're so pleased, and recommend this to anyone
who is
eligible to undergo the procedure. Folks, THIS IS FANTASTIC!!
I'm in the process of putting together a website concerning this.
We'll
have pics, etc. during different phases of growth. We'll keep
you
informed!!
Michael Sharrow (Talitha's dad)
http://www.crouzon.org
=========================================================================
Date: Sun, 25 Apr 1999
10:29:47 -0500
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From: Dora Jefferson
<dajeff@SIU.EDU>
Organization: Southern Illinois University at Carbondale
Subject: Re: Seth's Mom
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Dear Friends,
It has taken me a week to regroup since we returned from Miami.
I just
realized that Seth has had five surgeries since September. No
wonder we
are feeling fried. Hopefully, he won't have any for a while now.
I
don't believe that he could emotionally cope with another (I know that
I
can't, I am just barely hanging on by a thread).
Thank you all for your well wishes. We really enjoyed spending
time
with the Miller's again. Nicole's fingers look great!!!
She's a an
endearing child. When she smiles, her whole face smiles.
I am going to be late sending pictures this time. I have finals
coming
up and papers due, plus our only daughter is getting married in May
and
I haven't really taken care of business. I think we invited more
people
than the reception hall can legally hold. Oh, my, what shall
I do? I'll
think about it tomorrow, today I have paper that must be finished.
My love to all of you. I know and understand what you are going
through. My prayers go to all that have just had surgery and
those that
are facing it and especially those that are having to make difficult
decisions concerning their child's treatment.
Peace, Dori
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Date: Sun, 25 Apr 1999
11:29:20 EDT
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From: BBarn60368@AOL.COM
Subject: Re: my computer works now
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Stacy:
God does have wonderful things planned for your little boy. I
was so glad to
read your reference to Him. I don't know how some of us make
it through
without His strength in our lives.
Believe it or not, there is a reprieve from surgeries after separating
the
fingers and taking care of the fused sutures in the skull. Shirley
( 5 yrs.
old with Apert's) had 8 surgeries during the first 2 years of her life
and
hasn't had another one since then. I don't mean to say that this
is always
the way it goes, but at least it doesn't seem that the surgeries come
so
close together after those two areas are taken care of.
Much love and may God continue to bless you:
Alice in Orlando, Florida
=========================================================================
Date: Sun, 25 Apr 1999
13:49:41 -0700
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Discussing things with our kids...
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Hi everyone~
I just wanted to share something and see if anyone else kind of had
anything similiar happen.
Courtney an I were having lunch one day, a girls day, of shopping and
everything. We were talking as usuall and I told her I was going to
have
to call Children's Hospital to make some appointments for her. She
said
No that she was fine, she wasn't sick. I said I know but what she needs
to go see them anyway just like always. Then I said, what if they want
to do surgery to fix her fingers,( a few are bent the wrong way) she
said No they are just fine, see then she moved them. I said I know
but
they might want to make them straight, well she wasn't to sure about
that. Then I said well what if they want to do something to, and I
was
trying to think of a way to put it when I touched my head, she said
My
Head? I said yes, she sai NO!! I giggled I
said What? she said That
would hurt! I told her Mommy would not let them hurt her, but
she kept
saying No....... as in I don't think so!! it was kind of
cute, but
then I was thinking how grown up she is, because we have never had
to
talk about this before, and she has Never been affraid to go to the
doctors before, But she has had nothing done for gees I think going
on 3
years now, all she ever does is go to the family doctors if she gets
sick.
what I was a little concerned about is how things might go if and when
we do go to the Hospital this time and they want to do something. How
am
I going to help her through this with out her feeling as if I am being
the mean mom... I guess all I can do is wait and
see.
But if anyone else kind of went through the same thing I would like
to
hear how you handled it :)
thanks, Dawn
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Date: Sun, 25 Apr 1999
17:45:25 EDT
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From: Copperhd87@AOL.COM
Subject: Re: SHOOTING and God
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Well, here's my two cents if anyone is listening.
For all the new people, my son, Mitchell is two and was born with
craniosynostosis, not Aperts. I really appreciate being allowed
to be on
this listserver. Although I mostly lurk, it has been such a comfort
to our
family. I also have an 11 year old son and a 14 year old daughter.
This is my opinion. The problem is not God in the schools.
The problem is
God in the home and God on Sunday morning. So very, very many
of my
children's friends do not attend church regularly or have religious
education
in their home. The girl down the street couldn't figure out a
toy of
Mitchell's. My son explained that it was a model of Noah's Ark.
"Who's
Noah?" she asked. WHO'S NOAH???? I still can't believe
it. She comes from
a very nice family who has a perfect lawn, nice cars and everything
else we
expect in middle class America. Is it the schools that have failed
her? NO!
It's her parents.
My children get so much from their contacts at church. They have
many, many
adults that take a personal interest in their lives and really act
as role
models and mentors. Of course they get the religious education
and have
gained a faith and all the "perks" that go along with it. If
these troubled
children were in church on a more regular basis, I think we would see
a lot
less trouble.
Now for my second point. We have a program in our schools called
"Love and
Logic." The school district administrators have presented it
to us as the
latest thing since sliced bread. In my opinion it is wrong, wrong,
wrong.
It has taken the assertive discipline techniques that were popular
when my
older children were babies and distorted them to the point that they
are
absolutely ludicrous. One of the main points is "natural consequences."
Now
this is fine to a point. However, when the natural consequences
are allowed
to go on until a kid lands in jail or worse, it has gone too far.
A parent
has a responsibility to step in and be a parent. You are not
your child's
friend. You are his parent and you must accept the responsiblity
that goes
along with it. A parent must be involved in his child's life
and spend both
quantity and quality time with him. You have the right to expect
certain
behaviors and the responsibility to enforce the rules to acheive those
behaviors.
Another bogus theory is "Don't make rules you can't enforce."
The example
given by my daughter's middle school was "You are not allowed to smoke
pot in
my home," meaning that you could enforce that rule, but you couldn't
enforce
the "You are not allowed to smoke pot anywhere" rule. Can you
believe that?
This was actually published in a newsletter by by daughter's school.
This
advice once again lets parents off the hook.
I think many parents have fallen for this lame advice because it makes
parenting so easy. You just let your kid screw up--he'll learn.
I can't
know what my kid is doing all the time (making bombs, shooting up a
school)
so I won't try to prevent him from getting in trouble.
Really taking responsibility for your children and teaching them is
very time
consuming and difficult. I would have so much more free time,
if only my
kids would just take care of themselves. But they don't--they're
kids.
A whole other subject is the example set by parent's behavior, but I'll
let
you off the hook on hearing my soap box on that one today.
Just my two cents,
Resa
=========================================================================
Date: Sun, 25 Apr 1999
18:17:10 EDT
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From: Copperhd87@AOL.COM
Subject: Re: Shooting and violence on
television
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Just in case you didn't get your money's worth from my last post, here
is my
two cents on TV violence.
A little over four years ago, the Murrah Federal Building and 168 lives
were
destroyed in downtown Oklahoma City by a bomb. As a lifelong
resident of the
Oklahoma City area and someone that drove by that building on a regular
basis, I was absolutley devastated. Although I knew no one in
the building,
it is impossible to describe how this changed the lives of everyone
in the
area. Many of my friends were in the downtown area and did have
minor wounds
from falling down stairs, being bounced out of chairs, etc. Many
other
wounds were not visible.
The Friday after the bomb, my husband and I attended a church service
where
the ministers working at the recovery site spoke to the public.
Our
minister, Dr. Robert Allen, was in charge of all ministers at the site.
He
appeared on national television several times.
Another one of the speakers was Dr. Solomon, then bishop of the United
Methodist churches in the state of OKlahoma. He said that someone
had to
stand up to the violence on television and just turn it off.
He then
challenged the congregation to be the ones to do it. My husband
and I took
him up on this challenge. We immediately banned Power Rangers,
Teenage
Mutant Turtles, etc. for our son. We banned ourselves from R
rated movies.
We have never watched NYPD Blues.
Our son wasn't happy at the time, but now I can say he really doesn't
mind
missing Batman and other cartoon violence. He knows it's just
a family rule.
Instead, he learns from Histeria and Wishbone. And I am
really proud not to
be participating in the culture of violence. I feel that our
home was
"cleansed" and keeping it clean is important.
I challenge each one of you to ban TV violence from your home.
You'll never
be sorry.
BTW, Mitchell's middle name is Allen, after Dr. Robert Allen.
OK, I'll be quiet.
Resa
=========================================================================
Date: Sun, 25 Apr 1999
18:56:30 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Computer Question
MIME-Version: 1.0
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Lisa,
I too am having problems getting into the chat room I have been able
to
chat only twice. Last week I tried and tried and all I got was
opening
Applet whatever that means, but nothing happens. Don if you are
reading
this before tonights chat maybe you can assist in some way. I
will try
again tonight though. As far as Teeters page goes I'm not having
a
problem..
Raquel Miller....
=========================================================================
Date: Sun, 25 Apr 1999
19:10:44 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: Discussing things with our
kids...
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Dawn,
We still have a while yet to get to the stage you are in. However
everything we as Apert parents do for our children is to help them
in the
future and to improve their quality of life. I know it will be
hard and no
matter what, you are and will always be her loving mom. Just
think of it
this way, when it's time to go to the doctor's and get their shots,
you take
them there, they scream and fuss and might even give you a dirty look,
but
driving home it's mommy this mommy that. All is forgiven....My
thoughts on
all that we and our children will have to go through is that at the
end it
will all be worth it and they will thank us for it. Of course don't
get me
wrong we are not doing for the thanks, but I guarantee you that if
we don't
the outcome won't be the same.
Best wishes,
Raquel Miller
Apert Mail wrote:
> Hi everyone~
> I just wanted to share something and see if anyone else kind of had
> anything similiar happen.
> Courtney an I were having lunch one day, a girls day, of shopping
and
> everything. We were talking as usuall and I told her I was going
to have
> to call Children's Hospital to make some appointments for her. She
said
> No that she was fine, she wasn't sick. I said I know but what she
needs
> to go see them anyway just like always. Then I said, what if they
want
> to do surgery to fix her fingers,( a few are bent the wrong way)
she
> said No they are just fine, see then she moved them. I said I know
but
> they might want to make them straight, well she wasn't to sure about
> that. Then I said well what if they want to do something to, and
I was
> trying to think of a way to put it when I touched my head, she said
My
> Head? I said yes, she sai NO!! I giggled
I said What? she said That
> would hurt! I told her Mommy would not let them hurt her, but
she kept
> saying No....... as in I don't think so!! it was kind
of cute, but
> then I was thinking how grown up she is, because we have never had
to
> talk about this before, and she has Never been affraid to go to the
> doctors before, But she has had nothing done for gees I think going
on 3
> years now, all she ever does is go to the family doctors if she gets
> sick.
> what I was a little concerned about is how things might go if and
when
> we do go to the Hospital this time and they want to do something.
How am
> I going to help her through this with out her feeling as if I am
being
> the mean mom... I guess all I can do is wait and
see.
> But if anyone else kind of went through the same thing I would like
to
> hear how you handled it :)
> thanks, Dawn
=========================================================================
Date: Sun, 25 Apr 1999
18:12:30 -0500
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From: Carol <tcgraves@BELLSOUTH.NET>
Subject: Grains of Sand
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0010_01BE8F47.2EB7CCC0"
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> Grains of Sand:
Parents Certainly Are Misunderstood
>
>You thought you were happily smiling at your child from a hard stadium
>seat or a hot packed auditorium, but your child looked at your face
and
>saw approval of him and joy in what he was doing.
>
>You thought that you were just patting him on the back or on the head,
>or just ruffling his hair, but your child cherished the warm loving
=
touch
>and his heart was brightened.
>
>You thought you were reading a bedtime story with all the funny and
>scary voices, but your child enjoyed the fact you read every word
even
>though he had heard them a hundred times before.
>
>You thought you were letting your child help paint the house even
=
though
>the paint got kind of runny and drippy in places, but your child knew
>that you were working together as a family and felt a sense of
>accomplishment as a family.
>
>You thought you were singing silly songs or counting cows on a long
>boring trip, but your child learned that it was fun being together
no
>matter where you were.
>
>You thought you were spending a few minutes of your time by throwing
a
>ball in the back yard or baking some cookies, but your child, who
>realized that your time is precious, knew you were investing in him.
>
>You thought you asked your child's opinion about something that
>wasn't too important, but your child thought you asked because
>his opinions and thoughts were important.
>
>You thought you were being a good host by inviting your child's friends
>in for a cool snack on a warm summer day, but your child knew that
his
>friends were important to you and always welcome in your home.
>
>You thought the tears in your eyes went unnoticed when your child
>accomplished an important goal in his life, but your child knew that
he
>was deeply imbedded in you heart and you sensed his accomplishment.
>
>You thought that the refrigerator was as good of a place as any for
>hanging all the art work and "well done" papers that came home from
>school, but your child felt important when he came home from school
=
each
>day with something to show you and tack up in his personal hall of
=
fame.
>
>You thought you gave your child some simple chore or job to do and
told
>him, "Well done," with a smile when he did it, but your child learned
>responsibility and began to realize he could tackle even tougher =
things.
>
>You thought you were helping a troubled restless child get some sleep
=
by
>fixing a cup of hot cocoa, but your child felt you were opening
>you heart around a kitchen table and making all the problems a lot
>smaller.
>
>You thought the vacation wasn't much of a success because the fish
>didn't bite and the sun didn't shine, but your child still remembers
>everything that happened and he still laughs at all of the funny parts.
>
>You thought you were just pointing out the words in the church hymn
=
book
>with your child's finger as he tried to sing along, but your child
>learned that singing praises to God in worship was important.
>
>You thought that you were just giving him a quick hug at a special
=
moment
>or "just because," but your child carried it with him for a long time,
>because what you really said was, "I'm proud of you! I love you!"
>
>You thought you were just giving him a little kiss on the cheek to
tell
>him good bye as he left for school, but your child felt warm and loved
>because he knew there would be another one waiting for him when he
got
>home.
>
>Come to think of it, there are a lot of times when parents really
are
>misunderstood!
>
>Written by Steven Staats
>Submitted by John Rovegno
=20
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charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
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<META content=3D"text/html; charset=3Diso-8859-1" =
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</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2><BR>=20
>
Grains of Sand: =
Parents=20
Certainly Are Misunderstood<BR> ><BR>>You thought
you were happily =
smiling=20
at your child from a hard stadium<BR>>seat or a hot packed
=
auditorium, but=20
your child looked at your face and<BR>>saw approval of him
and joy in =
what he=20
was doing.<BR>><BR>>You thought that you were just
patting him on =
the back=20
or on the head,<BR>>or just ruffling his hair, but your child
=
cherished the=20
warm loving touch<BR>>and his heart was =
brightened.<BR>><BR>>You=20
thought you were reading a bedtime story with all the funny =
and<BR>>scary=20
voices, but your child enjoyed the fact you read every word =
even<BR>>though=20
he had heard them a hundred times before.<BR>><BR>>You
thought you =
were=20
letting your child help paint the house even though<BR>>the
paint got =
kind of=20
runny and drippy in places, but your child knew<BR>>that
you were =
working=20
together as a family and felt a sense of<BR>>accomplishment
as a=20
family.<BR>><BR>>You thought you were singing silly
songs or =
counting cows=20
on a long<BR>>boring trip, but your child learned that it
was fun =
being=20
together no<BR>>matter where you were.<BR>><BR>>You
thought you =
were=20
spending a few minutes of your time by throwing a<BR>>ball
in the =
back yard=20
or baking some cookies, but your child, who<BR>>realized
that your =
time is=20
precious, knew you were investing in him.<BR>><BR>>You
thought you =
asked=20
your child's opinion about something that<BR>>wasn't too
important, =
but your=20
child thought you asked because<BR>>his opinions and thoughts
were=20
important.<BR>><BR>>You thought you were being
a good host by =
inviting=20
your child's friends<BR>>in for a cool snack on a warm summer
day, =
but your=20
child knew that his<BR>>friends were important to you and
always =
welcome in=20
your home.<BR>><BR>>You thought the tears in your
eyes went =
unnoticed when=20
your child<BR>>accomplished an important goal in his life,
but your =
child=20
knew that he<BR>>was deeply imbedded in you heart and you
sensed his=20
accomplishment.<BR>><BR>>You thought that the refrigerator
was as =
good of=20
a place as any for<BR>>hanging all the art work and "well
done" =
papers that=20
came home from<BR>>school, but your child felt important
when he came =
home=20
from school each<BR>>day with something to show you and tack
up in =
his=20
personal hall of fame.<BR>><BR>>You thought you
gave your child =
some=20
simple chore or job to do and told<BR>>him, "Well done,"
with a smile =
when he=20
did it, but your child learned<BR>>responsibility and began
to =
realize he=20
could tackle even tougher things.<BR>><BR>>You
thought you were =
helping a=20
troubled restless child get some sleep by<BR>>fixing a cup
of hot =
cocoa, but=20
your child felt you were opening<BR>>you heart around a kitchen
table =
and=20
making all the problems a lot<BR>>smaller.<BR>><BR>>You
thought =
the=20
vacation wasn't much of a success because the fish<BR>>didn't
bite =
and the=20
sun didn't shine, but your child still remembers<BR>>everything
that =
happened=20
and he still laughs at all of the funny parts.<BR>><BR>>You
=
thought you=20
were just pointing out the words in the church hymn book<BR>>with
=
your=20
child's finger as he tried to sing along, but your child<BR>>learned
=
that=20
singing praises to God in worship was important.<BR>><BR>>You
=
thought that=20
you were just giving him a quick hug at a special moment<BR>>or
"just =
because," but your child carried it with him for a long =
time,<BR>>because=20
what you really said was, "I'm proud of you! I love =
you!"<BR>><BR>>You=20
thought you were just giving him a little kiss on the cheek to =
tell<BR>>him=20
good bye as he left for school, but your child felt warm and=20
loved<BR>>because he knew there would be another one waiting
for him =
when he=20
got<BR>>home.<BR>><BR>>Come to think
of it, there are a lot of =
times=20
when parents really are<BR>>misunderstood!<BR>><BR>>Written
by =
Steven=20
Staats<BR>>Submitted by John Rovegno<BR> </FONT></DIV></BODY></HTML>
------=_NextPart_000_0010_01BE8F47.2EB7CCC0--
=========================================================================
Date: Sun, 25 Apr 1999
19:19:59 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Ditto
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Resa,
All I can say, is my hats off to you. I don't believe I could
have ever
put it better than that. What you said is exactly what our pastor
preached today in church, it's like you were there and repeated his
every word.
Jack and I feel the very same way you do and try to involve our children
in everyway we can with our church, believe us it helps and they are
different kids for it. The love of God is in their hearts
and it
really really makes a big difference.
Greetings,
Raquel Miller....
=========================================================================
Date: Sun, 25 Apr 1999
19:34:48 EDT
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From: Karin Pittman
<KMea854818@AOL.COM>
Subject: Re: RED System Results
MIME-Version: 1.0
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Hey, anyone!
I was just wondering what the RED System is. I have been reading
most of the
emails, but I must have missed what it actually is. My son, Mason,
is 2 1/2
months old. We live in Denver and we are going to Medical City
in Dallas on
Thursday, April 29th to get a consultation from Dr. Salyer's office.
We are
meeting w/ Dr. Eric Hubli because Dr. Salyer was busy. Has anyone
had
surgery done by either of these doctors? I don't know what they'll
have in
mind for Mason, but he has all of the classic Aperts things, like the
bones
fused in the head and the slowed growth of the midface.
Is there anything we should know about this scary procedure before
we make a
decision on the doctors? I just want my son to have good results.
Thank you,
Karin Pittman
Denver, Colorado
=========================================================================
Date: Sun, 25 Apr 1999
21:11:09 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: Grains of Sand
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Thanks for sharing this with everyone. Mary
=========================================================================
Date: Sun, 25 Apr 1999
21:54:44 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
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Hello Amy!
Please send my get well wishes to Alex and your mom. I can relate
to the
recuperation phase! Also, please take your time with getting
back to me.
We have all the time in the world.
Hope all is well.
Joanne
=========================================================================
Date: Sun, 25 Apr 1999
21:51:55 +0000
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From: "J. G. Lindamood"
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Hi Alice.
My plans for my trip to Fl. are in the making. My Aunt and
Uncle are
planning a vacation too and my grandmother, who lives in the same home,
wants me to come when they are gone to keep her company. Well,
my aunt
wanted me to go to the beach with her. So many conflicting
possibilities. All I know for sure is that I am able to take
off
sometime towards the end of May. I was wondering if you would
be able to
do Disney or Epcot with me? It has been a cow's age since I had
the
opportunity to go. If it's just me and grandma, I doubt she will
want to
go. I'm just checking out my possibilities. I will let
you know as soon
as I know what's going on!
Joanne
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Date: Sun, 25 Apr 1999
21:50:00 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: RED System Results
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Michael,
Glad to hear that Talitha's surgery went so well. How old is Talitha?
Sure
sounds like she is a trooper.
Let us know when you get this web page on the RED system done.
Thanks,
Cristy
=========================================================================
Date: Sun, 25 Apr 1999
23:47:04 EDT
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From: JobeCST@AOL.COM
Subject: Re: RED System Results
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i'm interested in this RED system also. My son Tyler is 18 months
old and
has had one crainal vault remodeling surgery done back in may 98, by
Dr.
Salyer with Dr. genecov assisting. They are both
very nice and will answer
any questions you have I know this because i drill them very
time i see
them. Tyler has to go wed. for a 3d CT scan and we will see Salyer
again in
July. Dr. Genecov has done all three of Tyler's hand surgury's
and I've been
very pleased with him and the way he cares about Tyler. Hubli,
I've only
talked to on the phone but he seem's ok. There all located in
the same
office. hope this helps.
stacey jobe (tylers mom)
cisco, tx
=========================================================================
Date: Mon, 26 Apr 1999
00:11:25 EDT
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From: GSieb91515@AOL.COM
Subject: Re: my son ryan
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Happy 5th Birthday Ryan! Hope you have a wonderful day.
We will be
thinking of you in Houston.
Brenda, George, Melissa and Jonathan
Houston
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Date: Mon, 26 Apr 1999
00:11:24 EDT
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From: GSieb91515@AOL.COM
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Karen,
We are still having some drainage but not as bad. Jonathan is
on Augmentin
(his second antibiotic in 3-4 weeks). If the drainage doesn't
stop
completely in another day or 2 we will be going back in. It was
interesting
to learn what they did for Billy in the office. I wonder if that's
what we
will have to do. Our ENT appt. isn't until May 10th but if the
pediatrician
doesn't like what he sees we may just have to get an emergency appt.
with the
ENT. The next couple of days will tell.
Thanks for your concern and input. Hope Billy is feeling well.
Brenda
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Date: Mon, 26 Apr 1999
00:11:22 EDT
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From: GSieb91515@AOL.COM
Subject: Re: We are home early!!
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Martha-
Thanks. We are planning on around 6/11 and 6/12th. Congratulations
and good
luck with the twins. Our daughter is now almost 10 and
was 7 when Jonathan
was born. She absolutely adores her brother and is a great big
sister. I
know your family will experience the same wonderful feelings.
Brenda
=========================================================================
Date: Sun, 25 Apr 1999
22:30:39 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Discussing things with our
kids...
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Hi Dawn, Pat here in Calgary. My daughter Evajessie (The Peach)
and I
participated last year in the picture exchange. You may remember
us.
EvaJessie is now nearly six and has had ten generals so far for nine
surgeries. The most recent was last September to build her new
cheek. I
can relate to your thoughts about talking to the kiddos and trying
to get
some buy in from them for the procedures they have to endure.
For the new folks, I should introduce us again. We have been on
the
listserv since it began thanks to Don, although my daughter does not
have
Apert syndrome, but was born with an extensive facial cleft.
I'll post her
pages at the end so you can have a peek at what a Tessier 4 cleft involves.
Anyway, we were surgery free for about three years also following palate
repair at age ten months. Then all we had to deal with were PE
tubes for
the ears. But as she turned four, it was time to prepare for
her orbital
osteotomy (similar to an advancement). I explained to her that
Dr. Doug was
going to move her eye (up and forward). Later she told her aunty
that Dr.
Doug was going to move this eye over there next to that one!
Then we had to
re-explain what we meant.
For this ten hour operation, we prepped in several ways, one of
which was
autologous blood donations weekly (the blood donation rules are different
here in Canada from what they are in the States and since her dad and
I
could not give her blood, she had to donate her own.) This means
she got
stuck at least twice a week for the month prior to surgery, and we
had to
get her to buy in to it. Since she has a future of medical interventions
ahead of her, I decided at the beginning that she had to come willingly,
and
I would never allow her to be restrained for any procedures, never
allow
anything to be done TO her. Well, that all went pretty
well. She came
along and did her thing and was so wonderful about it. What a
peach!
But then, a year later, we began to look at tissue expansion. She remembered
the previous year's surgery pretty clearly at that point. I talked
to her
(she was just past five) about it and she said the same as Courtney:
"Nah,"
she said, "I don't want to." Well, we did have a choice of doing
this
process in a few years time, but we were anxious to get it done before
she
began Kindergarten. So we began to work on planting the seed,
and finding
her 'motivation'. We came up with the idea that she would be
able to wear
swim goggles once she had her new cheek. She seemed excited about
that, and
so we chatted it up wuite a bit. She asked a lot of questions
about how Dr.
Doug would make her new cheek, and I explained the process of putting
in a
'balloon' and that it would be blown up (expanded) every couple of
days and
get bigger and grow new skin so Dr. Doug could build her new cheek.
As she
asked questions, I tried to frame it for her in simple terms -- will
they
put air in? No they'll put in salty water. Will it hurt?
It may feel
tight. And then we would practice blowing up our cheeks and feeling
how it
felt. How do they put the salty water in? It goes in through
a needle.
Oops, there's that word. But we can use EMLA. Oh, she knew
EMLA. It was
her best buddy for the blood donations and the sticks the previous
summer,
so she was a bit apprehensive, but pretty cool nonetheless.
We went in June for the expander to be put in. She remembered
the sleeping
medicine and the presurgery cocktail (Versed). She remembered
the playroom
at the hospital. She knew where to find the videotapes in the
pre-op area
so she could watch a movie while awaiting the call for hte OR.
She was
pretty familiar wiht the process. She knew where to look for
the slippers
they give her to wear, and she knew she could take Flopsy the bunny
with
her. She knew she would have an IV on a pole (we called it George).
We had talked it all out. We were extremely well prepared. We
are always
allowed right into the OR with her while she is put under, and we are
always
in recovery as soon as possible with her. She knew that we were
going to be
there.
After the balloon was inserted, we had to go twice a week for saline
to be
injected into the port which was just in the temple region forward
of her
ear. Again, she knew the process, and it became very predictable
for her.
The EMLA went on, we went to the doc, he did the expansion (approached
from
outside her field of vision so as not to cause any more anxiety), she
got a
sticker and we went home. Because of vacation times, we saw five
different
surgeons for the expansions, and after the first few (EvaJessie even
slept
through one injection), she even expressed a preference for the butterfly
needle because she could move around a bit during the expansion.
So she
began to make her own decisions about how this was to be done.
That gave
her a measure of control over the situation and she handled them like
a
trooper. (I'm humbled by her strength and her resilience and her attitude
--
I'm amazed and proud).
While I was stewing over how to do all this and keep her spirit intact
and
keep her whole, I stumbled on an excellent book which I have talked
about
here before, but bears mentioning again. The book is called A
Child In
Pain. You can check it out at amazon.com The book
was written by Dr.
Leora Kuttner who was responsible for a lot of the pain management
for the
oncology department at BC Children's Hospital in Vancouver (where we
travel
for surgery). When I began reading it, I recognized all sorts
of techniques
and tricks of the trade that our nurses had used on EvaJessie to gain
her
confidence and cooperation. I began to understand how important
it was (is)
to get her to buy in to the procedures, to come to the table.
I began also
to understand that she had gained a lot of confidence in her own ability
to
handle the scary stuff. It isn't easy going into the procedures,
but I
think EvaJessie also knew that she could do this, that we could do
this
together. I recommend this book to anyone who has to help
thier child
endure procedures which may cause them anxiety and pain. It has
been a
lifeline for me the mom who worries about everything. It has
helped me be
stronger getting through this stuff, but also I gather strength
from the
fact that we are helping her to learn what she herself is capable of.
I
think that must be quite empowering for a little kid -- even though
they
probably don't process it in those terms.
Sorry I've been so long winded, but I feel that we've really done pretty
darn well in the prep department. I credit our hospital for being
so child
friendly and our medical caregivers for being so compassionate.
I credit
our family for handling things in a matter of fact way. But most
of all, I
credit my daughter for being the extraordinary person that she is.
I have an entire preparatory regime that we swing into when facing any
surgery. If anyone is interested, I'd be happy to share that too.
Anyway, Dawn, the short story is that when something needs to be done,
we
explain it as a have to do, but EvaJessie makes a lot of decisions
about how
it is done to her. Last time she asked if Dr. Doug could use
dissolving
stitches instead of staples to close the bicoronal incision.
Her choice.
He complied. She asked if she could please have the iv on her
right hand
because she is left handed. No problem.
When you look at the tissue expansion pictures, you'll see us laughing
en
route to the OR. Part of that was the Versed. But the other
part is that
the whole process is predictable to her and that has a lot of comfort
in it
-- for all of us.
Anyway, hope this helped. Gee, you probably didn't need that much
of an
explanation. :-)
Here are EvaJessie's URLs
www.widesmiles.org/gallery/peach/
http://www.widesmiles.org/gallery/peach/tissue.htm
not linked
www.widesmiles.org/gallery/evajessie/ not linked
bye for now
Pat (proud mommy to The Peach)
=========================================================================
Date: Mon, 26 Apr 1999
20:17:42 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Shooting and violence on
television
Mime-Version: 1.0
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Hi Resa
>I challenge each one of you to ban TV violence from your home.
You'll never
>be sorry.
I agree. Another thing that needs to be looked at - and we actually
have a television commercial going at the moment about this - is the behaviour
we demonstrate to our children. How many times have we seen children
shrink inside themselves because of how they are spoken to by their parents.
Even when a child has done something wrong they can be reprimanded, privileges
withdrawn, whatever, without actually putting the child down so they then
feel bad about themselves, and take their own bad feelings out on someone
else. They may have done something wrong, but that doesn't make the
child a bad child.
And if we are not managing our own frustration and anger, and let it
explode on our children when they put a step out of line, then what are
we modelling for them.
Hey, how come we didn't get textbooks before we became parents - maybe we need a degree in parenting before we are allowed to be one!! :-)
My 2c worth.
Regards
Ann
NZ
>
>BTW, Mitchell's middle name is Allen, after Dr. Robert Allen.
>
>OK, I'll be quiet.
>Resa
>
>
=========================================================================
Date: Mon, 26 Apr 1999
20:17:40 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Discussing things with our
kids...
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Hi Dawn
We have been dealing with this with Amy over the past year, as she has had no Apert-related surgeries since she was 4+1/2 (she is now 8yrs). I have learned that telling it to her straight in language she can understand is the best way. I waffled in the early days and put more onto her than she could handle.
Once I had become clear on it in my own mind the discussions took a more direct turn. I asked her if, when she was 5, she could make the sort of decisions that she makes now. She initially said yes, but once we talked about it she agreed she didn't know enough then to make the sort of decisions she makes now. I then used that to lead into the talk about Mum and Dad looking at a lot of information and talking about it, and having decided the head surgery was something that needed to be done so that she won't get teased so much when she is older.
Once I let her know that we were making the decision, and it was not something SHE had to decide about, she was quite relaxed. We talked a lot about it and in the early stages there were tears, and later there was anxiety, but she is okay now.
I also assured her that she will be asleep when it happens, so she won't know anything about the operation. I am very careful how I phrase that, as we have now had two pets "put to sleep" and she knows what THAT phrase means!! She has also seen one of "our" children in NZ with the distraction device in, and we have had a number of chats about the photos his mother copied to us.
She is keen on the idea of not having to go to school.
The mistake I made was saying that if her surgeons couldn't come up with a good reason we wouldn't go ahead with it. That put her into a state where she didn't know what was going to happen. Once she was given clear information she was okay.
Good luck.
Regards
Ann
NZ
=========================================================================
Date: Mon, 26 Apr 1999
11:27:28 EDT
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From: Yonstein@AOL.COM
Subject: Re: RED System Results
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Michael:
So glad to hear that Talitha did so well with the surgery. Boy,
you sound
great. I can't wait to see and hear more about it.
Thanks for informing us.
Janine Krebs
=========================================================================
Date: Mon, 26 Apr 1999
13:54:02 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: FW: Re-Post
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For those who were asking about the RED system, I found this note in
my
archives which explains it quite nicely...thanks Michael!!
Liz Niemi & Family (Jake - 17 mos. w/Apert's)
-----Original Message-----
From: Michael Sharrow [SMTP:msharrow@CAMALOTT.COM]
<mailto:[SMTP:msharrow@CAMALOTT.COM]>
Sent: Thursday, April 08, 1999 9:05 PM
To: APERT@LISTSERV.AOL.COM <mailto:APERT@LISTSERV.AOL.COM>
Subject: Re-Post
Hi all...Just thought I'd re-post this information for LeForte III questions
and for those who missed it in the first post:
Here is an explanation for the RED System (Rigid External Distraction):
This information was sent to me by Dr. Jeffrey Fearon, The Craniofacial
Center, Dallas, Texas
RIGID EXTERNAL DISTRACTION SYSTEM (RED SYSTEM)
The use of a halo-distractor is very new in craniofacial surgery.
As of
February 1, 1999, I have treated ten patients with this system over
the past
year, and I know of two or three other cases which have been done around
the
country aside from my ten. In my opinion, it represents one of
the greatest
advances in craniofacial surgery since I have been in practice.
This system
consists of a frame which is affixed to the skull through screws on
either
side of the head. From a perpendicular bar is attached two screws
which I
ask the parents to tighten twice a day. These screws are attached
to wires
which are in turn attached to a dental splint which is secured to the
upper
teeth. When I first saw this device I was quite hesitant to place
it on a
child, however, in my experience they are very easily tolerated by
children
and many children have not wanted the device removed because of the
extra
attention they received while wearing one. This device is used
to bring the
mid-face forward in an operation called a LeFort III. With a
traditional
LeFort III, cuts are made across the nose, underneath the eyes, and
down the
sides of the cheekbones so that the upper jaw can be slid forward.
The
upper jaw is then held forward by wiring the teeth closed and bone
grafts
are then taken to fill in the spaces left by the advancement.
With the RED
system, the same cuts are made for a LeFort III, however, the mid-face
is
not immediately brought forward; therefore, the teeth never need to
be wired
closed. More importantly, it is not necessary to take bone grafts
to fill
in the gaps left by the typical LeFort III advancement so the operation
is
shorter. Instead, as the face is slowly brought forward by turning
the
screws twice a day the body fills in the bone by itself. After
distracting
twice a day over a three to four week period, the device is left on
for an
additional three to four weeks to make sure all the bone is well healed;
then it is removed with a five minute brief anesthetic. Almost
all the
children report absolutely no discomfort when the screws are turned
to
slowly bring the mid-face forward. Perhaps this is because each
complete
turn of the screw brings the mid-face forward only one-half (0.5) millimeter
(by comparison there are approximately twenty-five millimeters to one
inch).
Perhaps the best thing about the RED system is that the mid-face can
be
brought forward much further than with a traditional LeFort III, and
it is
my hope that by using this device I may avoid ever having to repeat
this
operation in teenage years (which is the standard). Patients
who have had
both operations say the procedure with the RED system is easier.
The patient will be in the hospital for approximately six days and
would
need to stay in Dallas for several days after discharge. Postoperative
care
instructions and a tracking sheet will be given at this time.
The patient
would then return seven to eight weeks later for removal of the splint
and
RED system under anesthesia.
=========================================================================
Date: Mon, 26 Apr 1999
18:04:05 EDT
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: RED System Results
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Michael,
You sound great!!! We're so glad that Talitha made a wonderful recovery
and
that she is doing great. Both you and Melanie have been so upbeat
that it
takes some of the apprehension away for me!!
Take care. Keep us updated! Gail
=========================================================================
Date: Mon, 26 Apr 1999
20:37:24 EDT
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From: BBarn60368@AOL.COM
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Joanne:
Thanks for the e-mail. We would love to do Disney or Epcot with
you and will
be glad to try to work within your schedule (I do work full time, however.
Mon.-Fri. 7-4). Just keep us posted on the details as they materialize.
Much love and may God bless,
Alice
=========================================================================
Date: Mon, 26 Apr 1999
22:41:39 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: RED System Results
MIME-Version: 1.0
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Hi Michael,
So glad to hear about Talitha's surgery going
so well. It really makes
me feel excited about Collin's upcoming surgery. Dr Fearon is doing
his also.
He is a great doctor. I am very happy to hear that
the results are so
wonderful. We met the Howingtons when we were in Dallas the beginning
of the
month. Leigh Ann is such a beautiful little girl. The distraction
sure made
a big difference in her appearance. Looking forward to seeing
the results of
Talitha.
I have a question: You said she was in from
Mon to Fri. How many of
those days was in PICU? Private room? Is there a place to sleep while
she was
in PICU? When Collin had his last cranial surgery (1992) we slept in
a
waiting room especially for parents of surgery patients. There were
pillows &
blankets then. Do they still have these things? He was only in
PICU a couple
of days then. I am trying to be prepared for our next trip.
I sure hope
Collin does as well & will be in the hospital only 5 days! Another
question:
Did ya'll have to hang around Dallas for a day or two after released
from the
hospital?
Thanks for sharing - your email made my day!
Hope Talitha continues to
do well.
Take care,
Shirley Tanner
=========================================================================
Date: Mon, 26 Apr 1999
23:27:00 -0700
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Sender: Information exchange and
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From: Patricia Mc Donald
<goofy@WCOIL.COM>
Subject: Saying Hi to friends!
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0022_01BE903C.48BF80E0"
This is a multi-part message in MIME format.
------=_NextPart_000_0022_01BE903C.48BF80E0
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charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
TO: All who have sent e-mails directly to me,
Hello! I have recieved many wonderful letters and am very excited about
=
the number of friends I have recieved, However I am having promblems
=
responding to them. Many of you did not enclose your e-mails,and I
don't =
know how to get on the "address page"? So if you would please send
me =
your e-mail addresses,I would love to keep in touch with all you! I
=
would greatl appreciate it.
TO: All those with Aperts,
Being someone who has Apert Sydrome,I can relate to many of the =
situations you are faced with,surgeries and the aches and pains. I
would =
just like you to know you are in my thoughts and prayers,,and if you
=
need a friend or would just like to talk please feel free to e-mail
me =
at goofy@wcoil.com,I would love to hear from you! God Bless each and
=
every one of you!
Your friend in Ohio,
Patty
------=_NextPart_000_0022_01BE903C.48BF80E0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>TO: All who have sent e-mails
=
directly to=20
me,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Hello! I have recieved many
=
wonderful letters=20
and am very excited about the number of friends I have recieved, However
=
I am=20
having promblems responding to them. Many of you did not
enclose =
your=20
e-mails,and I don't know how to get on the "address page"?
So =
if you=20
would please send me your e-mail addresses,I would love to keep in
touch =
with=20
all you! I would greatl appreciate it.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>TO: All those with =
Aperts,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Being someone who has Apert Sydrome,I can
relate to =
many of=20
the situations you are faced with,surgeries and the aches and pains.
I =
would=20
just like you to know you are in my thoughts and prayers,,and if you
=
need a=20
friend or would just like to talk please feel free to e-mail me at
<A=20
href=3D"mailto:goofy@wcoil.com,I">goofy@wcoil.com,I</A> would love
to =
hear from=20
you! God Bless each and every one of you!</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Your friend in Ohio,</FONT></DIV>
<DIV><FONT size=3D2> Patty</FONT></DIV></BODY></HTML>
------=_NextPart_000_0022_01BE903C.48BF80E0--
=========================================================================
Date: Mon, 26 Apr 1999
20:42:35 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Welcome to family and photo's
are coming
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Hi Everybody, Welcome to all the new people, My name is Maxine Reed
and I
have aperts. Iam happly married to a wonderful man for going on 16
years
this June. We have a very healthy and normal 15 year old going on twenty
teenager. Iam so glad you new comers have found this place. It's really
a
great place to make new friends and get alot info. Patty and the other
new
comers if there is anything you would like to ask me just E-mail me
here or
at: rreed@cableone.net privately. Joanne what is your home address
so I can
send you a donation? I would love to help you make your goal! Nicki
and Tony
congradulations on your new arrival. I hope all goes well for you.
I'll be
praying for you.Thanks Carol for the Grain of Sand: We parents are
certainly
misunderstood.I feel Iam more each day now that I raising a teenager.
I
agree with Resa when she said that the problem is God in the homes.
My
daughter is going to a public High School because she promise her Mom
and
Dad that if she slipped uped, she would have to go to a Christian High
school. She was raised in a Christian home and went to a christian
grammer
school until she graduated from 8th grad. Then when she found out that
her
friends from Christian school were going to a public high she wanted
to go
too. So we made her keep her promise, so far she has and and her attuded
hasn't changed yet. It pays to have the parents get involve with their
kids.
We too keep violent movie's and shows out of our home. I think that
if
everyone would not watch movies and shows and if we tuned into cleaned
and
good moral shows maybe the television net works would get the idea
that
people want to watch good moral value shows and then they'll take off
the
trash thats now on. Dawn I just wanted to say is I know how Courtney
is
feeling I felt that way from time to time when ever I had my surgerys
when I
was little. I even felt that way when I was 21 and was going to have
my
facial surgery. But with the support of my family and with good friends
who
said that it would inprove my looks and help me get along better in
life and
with alot of prayer and prayers from friends and family I knew in my
heart
it was the right thing to do. I'll be praying for Courtney
and you I know
its hard on you both. I will tell you that I haven't regreated it since.
I
want to ask the Florida friends are any of you living near the fires.
I sure
do hope not. I'll be praying for you all who might be near the fires
and for
the friends in and around Littleton,Colorado.My daughter and I draged
my
husband in to up dated our family photo. ( He hates to get his picture
taken) They will be ready on May 5 then I'll have some copys made and
send
them out as soon as I can to all the people on the photo exchange.Kelly
you
certainly do have a true and great friend in Sarah Davis hang on to
her!Well
I better close it's getting late and my daughter says she wants me
to spend
a little time with her before she goes to bed. Take Care. My prayers
are
going out to all who are having surgery and to those who are recovering
from
surgery. Iam also praying for you parents. Get some rest. The little
ones
need you. You're no good if you are overly tired. So get some rest.
Maxine
or Max in Sunny Modesto, Calif.
=========================================================================
Date: Mon, 26 Apr 1999
22:12:05 EDT
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From: Copperhd87@AOL.COM
Subject: Craniofacial clinics
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Dear all:
Mitchell has been scheduled for his first craniofacial clinic in May,
a year
after his cranial reconstruction. I know that several of you
have mentioned
going thru these clinics, but I never realized they were such an involved,
structured process. If any of you have some helpful hints on
making it thru,
things I should avoid, things I shouldn't forget, that you could
share, I
would really appreciate hearing them.
Congratulations to Carlee and all the others whose surgeries are memories.
Good luck to Emily and all others with upcoming surgeries.
Thanks,
Resa
=========================================================================
Date: Tue, 27 Apr 1999
06:53:22 -0600
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: PICS & TENDON TRANSPLANT
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"
JUDY,
Yes, we did have the splints,
several different kinds infact, but
to no avail after 3 months they would tighten up together. Eventually
the
skin would adhere together. In surgery the doctor can usually
pull it back
apart, but if he was awake it would be to painful for him. I
will let you
know how this goes. I think it is only an 1-2 hour surgery, but
they
always say that and it ends up being 4-5 hours. Thanks!
I will be sending out our
pictures in 2 weeks because of Daryl's
surgery this week. I have some good news. We have been
driving 6 hours
one way for his hand surgeries. I have not been able to drive
more that
two hours without falling asleep with my eyes wide open. I have
to pull
over and take a power nap to get me to where we are going. An
organization
called angel flight is going to fly us to Kentucky. This is going
to be
such a big help for me. Please pray for us that we arrive safely
and
Daryl's surgery goes O.K.
Dana,
We are looking foward to
meeting you and your mother Friday. When
you get to the hospital, you can come in the back door and ask someone
to
guide you to the patients rooms. Then ask the nurses desk for
our room.
There are few rooms so it shouldn't be hard. If you need to talk
to me
before Thursday morning, call me at 931-684-4899. Talk to you
soon!
Denise Graham
=========================================================================
Date: Tue, 27 Apr 1999
08:25:39 -0400
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: TENDON TRANSPLANT
MIME-version: 1.0
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Hi Denise! My name is Joni Stephens and my son, Joseph, has Aperts.
He
is six years old and has been through more than 25 surgical procedures.
I haven't heard of this procedure, but I am very interested in the
results. Joseph has very limited use of his hands, and is at
an age
where he is beginning to realize that, which is frustrating for him.
Also, where do you live? I saw that you mentioned Lexington;
is that
Lexington, Kentucky? We live in Richmond, about 25 minutes from
Lexington.
Also, just want to say hello to everyone else. I am new to the
listserv, and have found it very interesting, to say the least.
To the
older girls with Aperts who have also recently joined the listserv,
just
want you to know what a blessing it is to have input from someone who
has been where our children are now. Not many people can understand
the
fears, pain, hopes, and joys of living with Aperts; thank you
for
sharing with us.
Joni M. Stephens
=========================================================================
Date: Tue, 27 Apr 1999
08:37:52 -0400
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: Midface and sleep apnea
MIME-version: 1.0
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Jim and Kelly Younkin wrote:
>
> Hi everyone! We've been remodeling 2 bedrooms this week so
I've not been
> reading the email too well (had 90 msgs when I checked today!) I
hope all
> who are having surgery are doing well. Sara Younkin also had
a sleep study
> done last week--we've been saying for months that she's working too
hard at
> night to breathe. At 2AM during the study the tech came in
to put her on
> O2. He said that she has episodes where her sats are down in
the 70's. Her
> doc went over the results with me in the morning. Apparently
she not only
> has episodes of obstructive apnea but also something called hypopnea(sp?)
> which as I understood it is when she would relax in REM sleep her
muscle
> tone was not enough at times to breathe effectively. Bottom
line is, she
> needs more O2 at night or she's at severe risk for pulmonary hypertension.
> None of us thought she'd tolerate the CPAP so for now we're using
nasal
> prongs to bring her baseline up so when she desats she doesn't go
as far
> down. He seems to feel that her best bet is a midface as soon
as her
> surgeon can arrange it--which we weren't planning on having to deal
with
> until at least next year. So we're off to Children's
Hospital of
> Philadelphia on 5/6 to make the arrangements. Hope everyone
is well! Kelly
Kelly and others:
My son, Joseph, has had
three sleep studies. He was having such a hard
time breathing at night, that he was on three liters of O2 and it wasn't
helping. His SAT's were dropping into the 70's, sometimes the
60's.
The doctors had done every kind of operation possible, removing his
adenoids and tonsils, some palatal surgery, nasal surgery to increase
his nasal passages, removing growths in his throat, even a midface
advancement, nothing helped for any length of time. He has not
growing,
because he was burning off all his calories while he was sleeping (or
trying to) at night. He began to have these coma-like spells
where he
would vomit and sleep, and vomit and sleep, for DAYS. His CO2
levels
were increasing, causing his cranial pressure to increase. After
three
years of dealing with this, we finally had a trach put in, and he is
doing GREAT!! We cap it during the day, because he only needs
it when
he is sleeping. What a difference it has made.
Joni
=========================================================================
Date: Tue, 27 Apr 1999
15:55:28 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Compuer Questions
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Lisa, sometimes that happens to me with the little boxes,don't know
why.Don
cn probaly tell us.
=========================================================================
Date: Tue, 27 Apr 1999
15:22:51 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Pat
Mime-Version: 1.0
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Pat,
Robyn, Brenna's mom here. Just wanted to say, Peach, I mean EvaJessie,
is
growing up to be souch a beautiful young lady! I can see a lot
of you in
her sillouette. Where did the time go! She was just a little
girl not so
long ago. Now my little Plum is getting to be such a big girl
too! Where
does the time go?
Hugs, Robyn
=========================================================================
Date: Tue, 27 Apr 1999
15:48:29 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: photo exchange
Mime-Version: 1.0
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Hello everyone,
Robyn J. here, Brenna's mom (just shy of 3, born with Crouzons).
I have
mostly been lurking these days. I was just getting around to
sending our
pictures out when I just checked the list and realized that I never
hit the
send button to deliver our address back in March. OOPS!
:- ( I hope it
is not to late to join you all. I had so much fun sending and
receiving
everyones photos last year. I can't wait to see how much everyone
has
grown in a year. Sorry for the delay. Hope everyone is
doing well. We
keep all the kiddo's getting ready for, and returning from surgery
in our
thoughts and prayers.
I sent my address to Don to add, but just in case...
Robyn & Brenna Johnston
PO Box 25633
Eugene, OR 97402
=========================================================================
Date: Wed, 28 Apr 1999
10:11:07 -0400
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From: tony zieth <zieth@HOTNET.COM.AU>
Subject: Mad, Mad, Mad, I'm close to
the edge!!!!!!!
Comments: To: mary mich <michmary@yahoo.com>,
Howard &
Ann <howrdnan@ihug.co.nz>,
fostercare list
letters <fphp@egroups.com>,
"D. Bas Denbraver"
<Denbraver@worldnet.att.net>
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This is going to be very long, sorry.
I so upset, I'm having trouble writing this post,
yes I knew it was to good to be true, The weight thing has raised its
ugly
head again.
I rang the SW, to check it was okay to go and see the latest photos,
of
Laura, while I was on the phone, I could tell something was up, Anyway,
when I had finished talking, The SW, very carefully told me that Tony
needed another DR letter to say he was what the GP(family doctor)
considered healthy, this is no problem, our GP is more than happy to
do
this, but she then went on to say that Tony should also get a sugar
and
colestrole test done. This was the final straw, I nearly lost it, I
told
her that, I thought she should find someone else to adopt Laura, she
asked
why, I said, well if this weight is going to hold up the adoption anymore
then We owed it the Laura, to let someone else adopt her, and give
her the
forever family that she so rightly deserved, The SW, went quite, for
a
second, then said very carmly, if Tony only would get these test done
I
promise things wont be held up anymore.
Well I'm not dumb enough to beleive that it won't be held up anymore,
but I
said fine, Tony will have the test done.
I then dropped into the GPs office, he was really mad, he couldn't
beleive
it, he told me that he would almost bet his life on Tony's test coming
back
okay, and handed me the test form.
Well off my darling husband went this am, to have a fasting colestrole
and
surgar test done, My darling husband is such a trooper, he said that
we
will fight to the end this time, and they(the department) will not
win. For
those of you that are new, Tony and I went for an ethiopian born child
last
year and the same thing happened, but we ran out of money, and our
fertility hopes won, so we decided to back down, and went tough another
6
months of hell on IVF.
I can hear some of you saying, well just lose the weight. This is what
I
think, I have know my lovely husband for 6and half years, we have been
married for 5, in that time, my husband has seen a doctor 3 times,
he has
had a handful of sick days, couple of which were for me, he has had
the flu
1 time. in other words I consider him pretty healthly.His weight has
not
cahnged in that time.
We both have tired to lose weight on several occansions, but it just
doesn't move (I'm also over weight but nothing is been said about that)
Plus we are know happy with our bodies, we both play competitive sport,
in
fact Tony plays indoor soccer which is so fast, he walks our dogs,
2 crazy
huskies every night, we as a family, go camping, off road driving,
fishing,
take the kids to the park, play chasy and basically do all the things,
people of the right weight do.
I tried to chase this issue up with the human rights commission, but
because these laws where made before the human rights laws, we have
no
legal standing.
The joys of living in Australia.
Anyway, I have decided to nominate myself as the avocate for all over
weight people trying to adopt, I will change the laws, along with my
lovely
ever suffering husband.
Poor Tony, first he couldn't give me the second child we both wanted
sooooo
much (although the problem is mine he blames himself, must be a man
thing!!!!!!) then we have to pull out over weight issue, though lack
of
money, now with my hubby in a great job, as a manager of a big hardware
warehouse. he still is battling, good job he rarely takes anything
personally!!!!!!!!.
Last night he joked to me, can any of your friends in america, give
us a
home and a Job for 12 months, and we could have adopted that baby 4
times
over if we lived in the USA.
I could see the heart ache he's going though over this in his eyes.
I know
he has even asked his boss if there is a possibility of transfers,
to the
USA, but the business aren't run as one, so there's no chance.
Anyway in a perfect world, the beautiful Foster kids I have in my house
would have been born to me, not to mothers that don't want them (in
one
case at least)
Please pull out all prayers, chants, spells, that Tony's test come
back
okay (that would just be our luck! if they didn't) and on Friday I
can walk
into that SW and hand over the key to our future as Laura's parents.
And
say when does she move in!!!!!!!!!!!
Nicki, Mum, fostermum, soon to be adoptive mum, wife to 3 (nearly 4)
great
kids and and fantasic husband.
CDLS, Tricuspid atresia, hemi fontan, Reflux and soon Apert syndrome
are
just some of the things we deal with!!!!!
Queensland Australia.
=========================================================================
Date: Wed, 28 Apr 1999
13:59:26 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Midface and sleep apnea
Mime-Version: 1.0
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Hi Joni
>advancement, nothing helped for any length of time. He has not
growing,
>because he was burning off all his calories while he was sleeping
(or
>trying to) at night.
Really interested to hear you raise this issue. One of the support contacts I have had recently was for a child with a CF anomaly and one of the issues the family was told was part of the condition was short stature. I connected with a local family with a child with the same anomaly and she said her son had started growing once he was on CPAP, and in his early teens has already reached the height they were told would be his adult height based on the height-at-2yrs-times-two calculation.
There is a lot to be said for throwing away those old medical textbooks - they don't include the innovations that are benefitting our modern day children. The worry is that so many of our doctors haven't got past those old textbooks, and in this case it appears the doctors of the family that contacted me have not yet caught up with the benefits of CPAP.
Hope that makes sense!
Keep smiling.
Ann
NZ
=========================================================================
Date: Tue, 27 Apr 1999
21:04:02 -0500
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Re: Mad, Mad, Mad, I'm close
to the edge!!!!!!!
In-Reply-To: <199904272252.IAA28335@hotnet.hotnet.com.au>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Nicki!
I can still remember the Post you made at Easter.
"HOPE ALL YOUR EASTER WISHES COME TRUE.
++++++++++++++++++++++
AND DON'T FORGET WHY WE HAVE EASTER!!!!!! (no not for the easter bunny!!)
This is what I read, given to us in the Bible:
Consider it pure joy, my brothers, whenever you face trials of many
kinds,
because you know that the testing of your faith develops perseverance.
Perseverance must finish its work so that you may be mature and complete,
not lacking anything.:: James 1: 2-4
I sent that verse because it sounds like you have been thoroughly tried.
I
admire your dedication, and determination to give Laura a good home.
Although many of us our blessed by our situations with our children,
it is
not every family that could look at the adoption of a special needs
child,
and call it a blessing from God like you do.
Also, do not be misled. Although we may not have the same set
of rules in
the United States as Australia, it is usually still a very difficult
procedure. Many families attempt adoption and are turned down
again and
again in our country.
If God meant it to be, and you pursue it, it is yours.
If God has other plans for Laura, you can be sure she is in good hands,
and
the LORD will have other blessings for you.
I do hope all goes well and Laura becomes a part of your family!
Don't
give up the faith.
Cheers,
Mike Allison
=========================================================================
Date: Tue, 27 Apr 1999
22:03:53 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Carlee is going to be on our
local news tonight
MIME-Version: 1.0
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Hello Everyone,
Just wanted to let all know that Carlee and I are going to be on our
local
news tonight. We had been talking to an agency trying to get
help with
funding for the June trip and a man called today and said that the
director
of the program was friends with one of the newscasters. So they came
out and
done a story on Carlee. It airs tonight at 11pm. We hope everyone is
doing
OK.
Cristy and Carlee
in Florida
=========================================================================
Date: Tue, 27 Apr 1999
20:47:44 -0700
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: Craniofacial clinics
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If any of you have some helpful
hints on making it thru,
things I should avoid, things I shouldn't forget,
Resa~
it can take all day sometimes, and you can get pretty worn out if you
let
yourself. Brings munchie things..... for you and your little one....
and remember
to bring favorite toys and books. There usually is a lot for them to
do, but
sometimes your sitting a room waiting.
One thing I did was write down little notes the doctors would say on
my
appointment paper I got next to the docs name so I knew who said what
:)
Good luck. I know you will make it through just fine and
it gets easier and
easier,the next time you go.
Dawn
=========================================================================
Date: Wed, 28 Apr 1999
02:13:38 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Tues This and That
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Nicki,
Hang in there. It really saddens me that you have to go
through so much.
Don't let the United States fool you though. My friend couldn't
adopt
because they found out that her husband had bounced one $10 check 25
years
prior. Everything else checked out perfectly. My
prayers and hopeful
thoughts are with you. I am so blown away how you know
all having this baby
entails and you are fighting for her. What a wonderful thing
to be able to
tell Laura. I wonder if my daughter Samantha will ever
ask or wonder if we
were disappointed (we're not), Laura will know you knew a head of time
and
wanted her very badly. All I can say is that if Adoption
was based on just
wonderful loving strong people you would have her right now.
Christy I hope the news show went well. The power of media is
wonderful. I
posted once before about a teenager in our support group that was on
Rosie
O'Donnel. He got so much needed help after that, and it introduced
him to
our community. Two months later I witness two woman reconize
him and shook
his hand. I hope you get to go on trip.Florida.
I hope you all do another get-to-gether next year. I will be there
with
Samantha. This year will be surgeries and I'd rather take her
on a plane
when she's a little older, but I can't wait to hear about the time
you all
have
I made an eye doctor appointment today, Samantha's left eyeball is jiggling.
It doesn't bother her and isn't extremely noticeable unless you are
looking
closer. Now I'm just in the swing of all of this and make
appointments.
But I remember five months ago hearing about all this was so overwhelming.
Now I just make the call. Love of a child is tremendous.
Well got another ten pictures out, well do ten more this week.
I look
forward to receiving pictures from exchange for Samantha's scrapbook.
She
is reacting to photographs now and I've started to show her her friends
from
Listserv. She has cooed at everyone.
Love,Lisa Guyette, mother of Samantha 5 1/2 months Aperts that includes
cleft
palate
=========================================================================
Date: Wed, 28 Apr 1999
00:15:07 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Pat / picture exchange
Mime-Version: 1.0
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Dear Robyn, well there's a few of 'em growing like little flowers
in God's
garden. Yes, it was over two years ago that we were gearing up
for that 10
hour surgery. Time has flown. It was two years ago that
we met at the Tim
Horton's here and Brenna was just wee thing. Looking forward
to seeing all
thenew pictures of all the kids.
Speaking of, we recieved Emily's and the Krebs pictures today.
So nice to
see the whole family. Gee, Emily is so big already, and last
year she was
just a peanut.
WE haven't done pictuers yet, but Peach's party is coming up in a few
weeks
so that'll be my excuse to get out the camera.
Night all
Pat
>
>Robyn, Brenna's mom here. Just wanted to say, Peach, I mean
EvaJessie, is
>growing up to be souch a beautiful young lady! I can see a lot
of you in
>her sillouette. Where did the time go! She was just a
little girl not so
>long ago. Now my little Plum is getting to be such a big girl
too! Where
>does the time go?
>
>Hugs, Robyn
>
=========================================================================
Date: Wed, 28 Apr 1999
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Mad, Mad, Mad, I'm close
to the edge!!!!!!!
Mime-Version: 1.0
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Dear Nicki this must be so hard and frustrating to have to jump
through the
hoops. I hope all is well that ends well. Thinking of you
and your family
and sweet Laura waiting for her forever family. Hope you are
all united soon.
Pat
=========================================================================
Date: Wed, 28 Apr 1999
09:12:57 EDT
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From: "pearl parrish" <vpps@hotmail.com>
To: MBwill43@aol.com
Subject: Fwd: Slow Dance
Date: Sun, 25 Apr 1999 20:15:56 PDT
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>From: flgirl@gbso.net
>To: vpps@hotmail.com
>Subject: Slow Dance
>Date: Mon, 19 Apr 1999 22:42:12 -0500
>
>Be sure to read the end of this message.
>
> S L O W D A N C E
>
> Have you ever watched kids
> On a merry-go-round
> Or listened to the rain
> Slapping on the ground?
> Ever followed a butterfly's erratic flight
> Or gazed at the sun into the fading night?
> You better slow down
> Don't dance so fast
> Time is short
> The music won't last
>
> Do you run through each day on the fly
> When you ask "How are you?"
> Do you hear the reply?
> When the day is done,
> Do you lie in your bed
> With the next hundred chores
> Running through your head?
> You'd better slow down
> Don't dance so fast
> Time is short
> The music won't last
>
> Ever told your child,
> We'll do it tomorrow
> And in your haste, not see his sorrow?
> Ever lost touch,
> Let a good friendship die
> 'Cause you never had time
> To call and say "Hi"?
> You'd better slow down
> Don't dance so fast
> Time is short
> The music won't last
>
> When you run so fast to get somewhere
> You miss half the fun of getting there.
> When you worry and hurry through your day,
> It is like an unopened gift....
> Thrown away...
> Life is not a race.
> Do take it slower
> Hear the music
> Before the song is over.
>
> PLEASE FORWARD THIS TO HELP THIS LITTLE GIRL
>
>PLEASE pass this mail on to everybody you know.
>It is the request of a little girl who will soon leave this world
as
>she has been a victim of CANCER. Thank you for your effort, this
isn't a
>
>chain letter, but a choice for all of us to save a little girl that's
>dying of a serious and fatal form of cancer. Please send
this to
>everyone
>you know...or don't know. This little girl has 6 months left to live,
>and as
>her dying wish, she wanted to send a chain letter telling everyone
to
>live their life to fullest, since she never will. She'll never
make
it
>to
>prom,graduate from high school, or get married and have a family of
>her own.
>
>By you sending this to as many people as possible, you can give her
and
>her family a little hope,because with every name that this is sent
to,
>The
>American Cancer Society will donate 3 cents per name to her treatment
>and recovery plan.
>
>One guy sent this to 500 people!!!! So,I know that we can send it
to
>atleast 5. Come on you guys.... and if you're too selfish to take
10-
15
>minutes scrolling this and forwarding it to EVERYONE, then you are
one
>sick person. Just think it could be you one day. It's noteven
your
>money
>just your time!!!
>
> PLEASE PASS ON
>
>
>to: IN:wjbaldwin1@home.com
>cc: IN:princessa@c-gate.net
> IN:bdickinson@poeandbrownaz.com
> IN:gbhall@mailexcite.com
> IN:KNCHESSIE@AOL.COM
> IN:vpps@hotmail.com
> IN:VESHEPPARD@AOL.COM
>
>
_______________________________________________________________
Get Free Email and Do More On The Web. Visit http://www.msn.com
--part1_a9bdb935.24586359_boundary--
=========================================================================
Date: Wed, 28 Apr 1999
09:38:01 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Re: Fwd: Slow Dance
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Marilyn Williams wrote:
>
> ---------------------------------------------------------------
>
> Subject: Fwd: Slow Dance
> Date: Sun, 25 Apr 1999 20:15:56 PDT
> From: "pearl parrish" <vpps@hotmail.com>
> To: MBwill43@aol.com
>
> >From: flgirl@gbso.net
> >To: vpps@hotmail.com
> >Subject: Slow Dance
> >Date: Mon, 19 Apr 1999 22:42:12 -0500
> >
> >Be sure to read the end of this message.
> >
> > S L O W D A N C E
> >
> > Have you ever watched kids
> > On a merry-go-round
> > Or listened to the rain
> > Slapping on the ground?
> > Ever followed a butterfly's erratic flight
> > Or gazed at the sun into the fading night?
> > You better slow down
> > Don't dance so fast
> > Time is short
> > The music won't last
> >
> > Do you run through each day on the fly
> > When you ask "How are you?"
> > Do you hear the reply?
> > When the day is done,
> > Do you lie in your bed
> > With the next hundred chores
> > Running through your head?
> > You'd better slow down
> > Don't dance so fast
> > Time is short
> > The music won't last
> >
> > Ever told your child,
> > We'll do it tomorrow
> > And in your haste, not see his sorrow?
> > Ever lost touch,
> > Let a good friendship die
> > 'Cause you never had time
> > To call and say "Hi"?
> > You'd better slow down
> > Don't dance so fast
> > Time is short
> > The music won't last
> >
> > When you run so fast to get somewhere
> > You miss half the fun of getting there.
> > When you worry and hurry through your day,
> > It is like an unopened gift....
> > Thrown away...
> > Life is not a race.
> > Do take it slower
> > Hear the music
> > Before the song is over.
> >
> > PLEASE FORWARD THIS TO HELP THIS LITTLE GIRL
> >
> >PLEASE pass this mail on to everybody you know.
> >It is the request of a little girl who will soon leave this world
as
> >she has been a victim of CANCER. Thank you for your effort, this
> isn't a
> >
> >chain letter, but a choice for all of us to save a little girl that's
> >dying of a serious and fatal form of cancer. Please
send this to
> >everyone
> >you know...or don't know. This little girl has 6 months left to
live,
> >and as
> >her dying wish, she wanted to send a chain letter telling everyone
to
> >live their life to fullest, since she never will. She'll never
make
> it
> >to
> >prom,graduate from high school, or get married and have a family
of
> >her own.
> >
> >By you sending this to as many people as possible, you can give
her
> and
> >her family a little hope,because with every name that this is sent
> to,
> >The
> >American Cancer Society will donate 3 cents per name to her treatment
> >and recovery plan.
> >
> >One guy sent this to 500 people!!!! So,I know that we can send it
to
> >atleast 5. Come on you guys.... and if you're too selfish to take
10-
> 15
> >minutes scrolling this and forwarding it to EVERYONE, then you are
> one
> >sick person. Just think it could be you one day. It's noteven
your
> >money
> >just your time!!!
> >
> > PLEASE PASS ON
> >
> >
> >to: IN:wjbaldwin1@home.com
> >cc: IN:princessa@c-gate.net
> > IN:bdickinson@poeandbrownaz.com
> > IN:gbhall@mailexcite.com
> > IN:KNCHESSIE@AOL.COM
> > IN:vpps@hotmail.com
> > IN:VESHEPPARD@AOL.COM
> >
> >
>
> _______________________________________________________________
> Get Free Email and Do More On The Web. Visit http://www.msn.com
I didn't think we were to send chain letters on the listserver. Doubtful
if this is even true...so many of them are not.
=========================================================================
Date: Wed, 28 Apr 1999
10:53:42 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: [Fwd: Try this one]
Comments: To: Benny & Debbie Hopper <BEHOPNC@aol.com>,
Bob & Cheryl
Pettis <drbob28@mciworld.mci.com>,
Bob Knapp <robert.knapp@nationscredit.com>,
"ccvfs.gkurp@capital.ge.com"
<ccvfs.gkurp@capital.ge.com>,
"darren.mccarthy@nationscredit.com"
<darren.mccarthy@nationscredit.com>,
David W Brown
<dbrown@sophia.smith.edu>,
Don & Linda
Weber <donalin@alaska.net>,
Greg Hanavan
<hanavan_gssk@msn.com>,
Jamie Spadini
<jspadini@uclink4.berkeley.edu>,
Jim Atkins <"Atkins,Jim/HP-Roseville.om1"@ix.netcom.com>,
John Brooks
<jbkonga@hotmail.com>,
Keith &
Michele Elliston <elliston@pacbell.net>,
Keith Whit <kbwhit@foothill.net>,
Ray & Susan
Pope <rpope27911@aol.com>, Rick Gahn <gahn@prodigy.com>,
Scott Raymond
<scott.raymond@nationscredit.com>,
Tom & Barbara
Gargano <gargano@soon.com>
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Date: Wed, 28 Apr 1999 10:23:04 -0700
From: Jeff <ffej@intgate.interx.com>
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To: "Brent E. Young" <beyoung@ix.netcom.com>, Carl <Punty@aol.com>,
Deo <Uptempo36@aol.com>,
"Highjeeper@aol.com" <Highjeeper@aol.com>,
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Subject: Try this one
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>THIS IS A TEST and this is the ONLY year it will work so
enjoy it
> >>> while
> >>> > >you can and spread it around.
> >>>
> >>> DON'T CHEAT BY SCROLLING DOWN FIRST! It only takes 30 seconds.
Work
this
> >>> out as you read. Don't read the bottom until you've worked
it
out!
> >>> 1. First, pick the number of days a week that you would like
to
eat
> >>> out.
> >>> 2. Multiply this number by 2.
> >>>
> >>>
> >>> 3. Add 5.
> >>> 4. Multiply it by 50. (I'll wait while you get the
calculator)
> >>> 5. If you have already had your birthday this year, add 1749.
> >>> If you haven't, add 1748.
> >>> >6. Now subtract the four digit year that you
were born.
> >>>
> >>>
> >>>
> >>> SEE BELOW
> >>>
> >>> You should now have a three digit number:
> >>> The first digit of this was your original number (i.e., how
many
times
> >you
> >>> want to go out each week).
> >>> The second two digits are your age
> >>> This is the only year (1999) it will ever work, so spread the
fun
around
> >>> while it lasts!
--------------829E0712CC48C7A5C04DE643--
=========================================================================
Date: Wed, 28 Apr 1999
18:29:02 -0700
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Christine Clark
<apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: [Fwd: Health Care]
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I won't even start on my stories with health care since I started my
fight with breast cancer last year but it hasn't been pretty.
I know
you ALL can relate since you are also dealing with it for your
children. SO, I thought you might get a kick out of this article
that
my Dad sent to me. It is SO TRUE!!
Take care, Christine
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Date: Tue, 27 Apr 1999 15:49:11 -0700
From: Leo Poppoff <leop@thegrid.net>
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To: Christine Clark <apertnet@ix.netcom.com>
Subject: Health Care
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Dear Christine,
Thought you'd enjoy this column that was on Dr. Dean Edell's website.
It's all so true.
Love, Dad
Health Care To Offer Personal Touch?
Really And Truly?
A recent AP news story came across my desk with
the headline, "Hospital Patients Get The
Customer Treatment: Hospital employees offer
the personal touch."
The article described how the University of
California at Irvine Medical Center had gone in
for a crash program of improving customer
relations.
This translated into:
--When a sick person in a bed presses the call
button, somebody will answer.
--When a customer arrives on time for a doctor's
appointment, they will not be forced to wait 15
minutes to two hours (the current range of typical
times).
--Everybody on the hospital payroll has to attend
customer-service workshops.
--A covered golf cart stands ready to whiz older
customers about the labyrinthine campus.
Good. Great stuff. Glad to hear it.
But imagine, for one moment, that you are a
newspaper editor, and this thing comes down the
AP pipe. Ask yourself: Is this news? Should I put
this in the paper? What makes it news?
The answer: Yes, it is news.
What makes it news is not the fact that UCI is
doing it. What makes it news is the fact that it is,
indeed, news. In 1999 you can still make
headlines by declaring that you are going to treat
patients like human beings, let alone that
exalted form of homo sapiens known as the
"customer."
It’s this kind of thing that makes people like me
go ram our heads into the nearest convenient
brick wall.
I think I wrote my first "patient-as-customer"
piece in hieroglyphics on papyrus. Planetree, the
San Francisco thinktank that is the mother church
of the "patient-as-customer" religion, has been
preaching its gospel since sometime in the reign
of Vespasian.
I could fill screens with scores of examples of
institutions designed around this idea, from North
Hawaii Community Hospital on the Big Island to
Mid-Columbia Community Hospital in The Dalles,
Oregon - and I am sure there are scores more
that I do not know about.
But the reality is that these remain very much the
exception. The average experience is far
different. In fact, in no other retail experience is
the customer treated as badly as in health care.
Using health care is not picking up a fish
sandwich or a pack of Rolaids. The costs of the
average transaction ranges from about what it
would cost to buy a boombox (going to the
Emergency Room with the flu) to an Armani suit
(one night in a hospital bed) to a Lamborghini
(being treated for AIDS).
But when I walk into my local stereo store,
Nordstrom's, or auto showroom, a salesman
immediately greets me and asks what I would
like to see. My favorite local roastery greets me
by name, and has my latte all set up, just the
way I want it (double shot, in a tall glass mug) by
the time I get to the counter - because I am the
customer.
The contrast with my experience when I have to
enter the world of health care could not be more
stark. I gird for battle on my own behalf, or on
behalf of a sick child, spouse or friend. I
encounter long waits, bureaucratic forms, opaque
instructions, lack of communications,
unnecessary pain ... the recitation could be
endless.
And this is normal.
This is normal precisely because, whatever the
intentions of the individual caregivers, most of
the health care industry does not really see the
patient as a "customer." Customers engender
profits.
For most health care providers - clinics, hospitals,
even doctors - you are not a potential profit but a
cost. At best, you are a dicey profit possibility:
the organization will make a profit from your case
only if they keep costs extremely low.
So I'll put on my futurist hat. I have several, in
fact. Today I'll try the "Pollyanna" model - it's
pink, with lace trim and a fake sunflower on the
band. I will imagine a "customer-centered" future
for health care.
In this "Pollyanna hat" future, health care is
organized to make money by providing its
ultimate product: the care, technology,
knowledge, and close attention that lead to
greater health and better lives for its customers.
How do we get there? Let's talk about it. I am
convinced that it can be done. I am convinced
that there is no simple answer. And I am
convinced that almost any answer would be better
than the way we do it now.
Joe Flower, Healthcare Futurist
--------------3C4F612BF278DECBB2D42DAC--
=========================================================================
Date: Wed, 28 Apr 1999
21:14:20 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Craniofacial clinics
MIME-Version: 1.0
Content-Type: text/plain
You may also want to ask each doctor for a business card so if you have
questions later, you can go back and ask. Also, be sure they
send you a
copy of the overall write-ups and findings on your child.
Liz Niemi
-----Original Message-----
From: Apert
Mail [SMTP:apertmail@USWEST.NET]
Sent: Tuesday,
April 27, 1999 10:48 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Craniofacial clinics
If any of you have some helpful
hints on making it thru,
things I should avoid, things
I shouldn't forget,
Resa~
it can take all day sometimes,
and you can get pretty worn out if
you let
yourself. Brings munchie
things..... for you and your little one....
and remember
to bring favorite toys and
books. There usually is a lot for them to
do, but
sometimes your sitting a
room waiting.
One thing I did was write
down little notes the doctors would say on
my
appointment paper I got
next to the docs name so I knew who said
what :)
Good luck. I know you
will make it through just fine and it gets
easier and
easier,the next time you
go.
Dawn
=========================================================================
Date: Wed, 28 Apr 1999
21:40:08 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: I've been out
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Good evening!
I've been out of town the last few days, so I'm sorry about not getting
Jake's pictures out for the exchange. Rene, I also promised you copies
of
mid-face advancement articles and haven't been able to get to that
either.
I'll try working on them this weekend.
I've been out of town because my father-in-law suffered a severe cerebral
hemorrhage this past Monday. My husband and I have been together
for twelve
years, so we're very close. He's in ICU about 150 miles away.
I just got
back today, but my husband is still there. This is devastating
news because
we've been told his outcome is not good. This morning, they had
to go in
and relieve some of the pressure on his brain with a suction catheter.
After surgery, I got quite a shock! Here's my father-in-law with
a large
bandage around his head, with a drain sticking out of it. Reminded
me too
much of Jake after his cranial surgeries. Interestingly enough,
Jake's
middle name is the same as my father-in-law's!
Then, Jake came down with a 103 temp today, and was vomiting all last
night...and of course, I wasn't around to take care of him due to being
at
the hospital with my husband and his family 150 away. My poor
mother was
watching him, so I had to rush home. Can't quite figure out why
he has the
temp. The doctor ran a lot of tests, and can't figure it out
either. He
thinks Jake has the flu.....boy, it's been a tough week.
Anyway, hope all is well for those having surgeries or recovering from
them.
Please say a prayer for us, thanks!
Liz Niemi & Family