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Hi Everyone,
There was a file on the Listserv with all the Birthdates on it but Im
=
not sure who sent it and it was a WORKS FILE. Has anyone got
this on a =
WORD FILE that can send it to me as we no longer have works on out
=
Computer.
Thanks Carol (Australia)
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charset="iso-8859-1"
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<!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 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hi Everyone,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>There was a file on the Listserv
=
with all the=20
Birthdates on it but Im not sure who sent it and it was a WORKS =
FILE. Has=20
anyone got this on a WORD FILE that can send it to me as we no longer
=
have works=20
on out Computer.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thanks Carol=20
(Australia)</FONT></DIV></BODY></HTML>
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=========================================================================
Date: Wed, 15 Jul 1998
00:18:51 -1000
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: "Joana H. Magno,
M.D." <magnomd@ALOHA.NET>
Subject: Re: Old Geezer
MIME-Version: 1.0
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My old geezer had just turned 44 two days before
our Mar Mar was
born, so I think he is the oldest so far in the group.
I was 38 with
a birthday in three weeks. We got the "advanced paternal
age"
discussion thrown our way, too. Nothing showed up on amniocentesis
or
the ultrasound that came along with it (they should have been
able to
pick it up ----wonder if we could look at the study retrospectively?);
diagnosed around 7 1/2 months in utero.
Maybe we should add up maternal and paternal age just to keep
the
"advanced paternal age" issue equal??
Joana Magno
Honolulu
=========================================================================
Date: Wed, 15 Jul 1998
08:52:02 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Teeter tonsils
MIME-Version: 1.0
Content-Type: text/plain
Hi everyone -
Welcome to all our new list subscribers. We're just returning
from
another short vacation at the beach. Judy, Teeter kept saying
that you
and Nick were 'missing.'
We've been concerned for a while now about the size of Teeter's tonsils
and her snoring, and more and more lately she complains (even when
she
first wakes up) of being tired. People ask her how she is doing
and she
tells them she is worn out. So we scheduled a visit to the pediatric
ENT associated with our craniofacial group, and he saw her Tuesday
afternoon (yesterday). I think Teeter won some kind of Grand
Tonsil
prize for her right one. The doctor took a lot of time and explained
the narrowing of the bony part of the nasal airway and how the enlarged
tonsils and adenoids make it even harder to breathe. She goes
in Friday
to have them removed, with an overnight observation period.
Pretty funny, when we first spoke with the ENT we explained about the
discussions we've followed here on the listserv regarding tonsils,
sleep
apnea, sleep studies, etc., and the details of Teeter's sleeping habits
(excessive snoring, brief pauses in breathing, etc...) We said,
so
what's the first step, do you want a sleep study? He laughed
and said,
no, why bother? He said we'd done our own sleep study and told
him
everything he needed to know.
So now Teeter could not be happier. She's been going through a
hypochondriac phase lately, obsessed with the internal workings of
the
human body (she can name all the parts of the digestive system:
Your
mouth, esophagus, stomach, small intestine, large intestine....and
your
BUTT!) So she is completely thrilled to be going to the hospital again,
and she thinks she knows everything about having one's tonsils removed.
She is also very excited about her first loose tooth and had her first
visit to the family dentist last week.
We're looking forward to a quiet weekend, hopefully I'll get some web
pages out there. Janine, Emily is next!!!!!!
-------Don
=========================================================================
Date: Wed, 15 Jul 1998
10:32:40 +0000
Reply-To: Information exchange and Internet
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: Teeter tonsils
In-Reply-To: <A1E737EE1A8CD011A8320060972D306C074D45@exchange.scrs.state.sc.us>
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> We've been concerned for a while now about the size of Teeter's tonsils
> and her snoring, and more and more lately she complains (even when
she
> first wakes up) of being tired. .............. She goes
in Friday
> to have them removed, with an overnight observation period.
My oldest had his tonsils removed for sleep apnea/
partial airway
obstruction. His ENT didn't feel it was necessary to do a sleep
study either. I hope Teeter's surgery is as uneventful as Rob's
was.
I learned a few things from him: cold stuff sometimes HURTS going
down. He liked his beverages lukewarm for days. He was
terribly
disappointed that the promised ice cream and popsicles hurt more than
they helped. The good news -- he reacts badly to codeine (what
they
wanted to give for pain), but plain old Tylenol kept him quite
comfortable.
Judy G
=========================================================================
Date: Wed, 15 Jul 1998
10:44:49 EDT
Reply-To: Information exchange and Internet
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Surgery Update
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Glad to hear the Quentin is doing better after the surgery. Sorry
he had a
bit of a difficult time.
Also glad to hear that EvaJessie is doing so well with the balloon in
her
cheek. Doesn't sound like the injections would be very much fun.
Take care,
Janine
=========================================================================
Date: Wed, 15 Jul 1998
10:48:35 EDT
Reply-To: Information exchange and Internet
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Teeter tonsils
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Thanks Don:
Wishing Teeter good luck with her tonsil and adenoid surgery on Friday.
We
will be thinking of her ( and you guys) and hoping she does ok.
Janine
=========================================================================
Date: Wed, 15 Jul 1998
10:49:24 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Jacob's surgery
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Laurie:
By this time Jacob already had his tissue expanders put in. I
hope things
went ok for him.
Janine
=========================================================================
Date: Wed, 15 Jul 1998
10:53:18 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Old Geezer
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Dear Billy's Dad:
Hello, nice to meet you and chat. My husband, Brian, is right
behind you. He
is 42 years old last April. He feels the same way as you do.
Everyday is
like a new day with Emily. Age doesn't matter to him at all.
Janine
=========================================================================
Date: Wed, 15 Jul 1998
10:54:11 EDT
Reply-To: Information exchange and Internet
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: Birthday List
Mime-Version: 1.0
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If anyone does have it on a word file, I would love it also as I couldn't
format it to works either.
Janine
=========================================================================
Date: Wed, 15 Jul 1998
10:13:10 -0700
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Amanda / Cathy
Curtis <cam@CNW.COM>
Subject: Web Page Information
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Mr. Sears-
Hey! I am looking to start my web page. do you want me to send
it all to
you by mail. The pictures and everything? Please tell me. Also, I lost
your
mailing address- if you could send that to me as well- Thank You
Amanda
-----Original Message-----
From: Don Sears <dsears@SCRS.STATE.SC.US>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, July 15, 1998 5:55 AM
Subject: Teeter tonsils
>Hi everyone -
>
>Welcome to all our new list subscribers. We're just returning
from
>another short vacation at the beach. Judy, Teeter kept saying
that you
>and Nick were 'missing.'
>
>We've been concerned for a while now about the size of Teeter's tonsils
>and her snoring, and more and more lately she complains (even when
she
>first wakes up) of being tired. People ask her how she is doing
and she
>tells them she is worn out. So we scheduled a visit to the pediatric
>ENT associated with our craniofacial group, and he saw her Tuesday
>afternoon (yesterday). I think Teeter won some kind of Grand
Tonsil
>prize for her right one. The doctor took a lot of time and explained
>the narrowing of the bony part of the nasal airway and how the enlarged
>tonsils and adenoids make it even harder to breathe. She goes
in Friday
>to have them removed, with an overnight observation period.
>
>Pretty funny, when we first spoke with the ENT we explained about
the
>discussions we've followed here on the listserv regarding tonsils,
sleep
>apnea, sleep studies, etc., and the details of Teeter's sleeping habits
>(excessive snoring, brief pauses in breathing, etc...) We said,
so
>what's the first step, do you want a sleep study? He laughed
and said,
>no, why bother? He said we'd done our own sleep study and told
him
>everything he needed to know.
>
>So now Teeter could not be happier. She's been going through
a
>hypochondriac phase lately, obsessed with the internal workings of
the
>human body (she can name all the parts of the digestive system:
Your
>mouth, esophagus, stomach, small intestine, large intestine....and
your
>BUTT!) So she is completely thrilled to be going to the hospital again,
>and she thinks she knows everything about having one's tonsils removed.
>She is also very excited about her first loose tooth and had her first
>visit to the family dentist last week.
>
>We're looking forward to a quiet weekend, hopefully I'll get some
web
>pages out there. Janine, Emily is next!!!!!!
>
>-------Don
>
=========================================================================
Date: Wed, 15 Jul 1998
13:33:19 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Web Page Information
MIME-Version: 1.0
Content-Type: text/plain
Hi Amanda -
If you have the facilities to scan your own photos, that would be fine,
otherwise mail them to me and I'll be glad to scan them and return
them
to you. For text, just send by email or email attachment in any
word
processor format - I can convert. If you have a general look
and feel
you want to your page, describe it or sketch it out and send it to
me
any way you can. I'm versatile!! If you want to use a particular
background send it or send the address of a web page that has it and
I'll get it from there.
Our mailing address is:
Don Sears
1900 Shadowood Drive
Columbia, SC 29212
803-732-2372 voice
803-407-1396 fax
And please call me Don - my dad is Mr. Sears!!!!!!!
> -----Original Message-----
> From: Amanda / Cathy Curtis [SMTP:cam@CNW.COM]
> Sent: Wednesday, July 15, 1998 1:13 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Web Page Information
>
> Mr. Sears-
> Hey! I am looking to start my web page. do you want me
to send it
> all to
> you by mail. The pictures and everything? Please tell me. Also, I
lost
> your
> mailing address- if you could send that to me as well- Thank You
> Amanda
>
=========================================================================
Date: Wed, 15 Jul 1998
13:38:43 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: can you help?
Comments: To: Magdalena Malinowska <>
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Dear Magdalena,
I do not know of any foundations which provide this support, but I am
forwarding your letter to our listserv and if any of our readers can
help, they will reply directly to you. Ok folks, can any of you
help?
Please reply directly to and cc me at
catndon@apert.org for our files... thanks!!!
> -----Original Message-----
> From: Magdalena Malinowska [SMTP:]
> Sent: Thursday, July 09, 1998 10:41 AM
> To: CatNDon@apert.org
> Subject: can you help?
>
> Hello,
>
> I got your address from "Teeter's page". I took the liberty of writing
>
> to you because I am hoping that you can help me. I have just learned
> that there is a little girl in my family with the Apert Syndrome
and
> I'd
> like to help her.
>
> I live in Boston but was born in Poland. I moved to the United States
> when I was fourteen (10 years ago). Recently, after graduating from
> college, I decided to return to my homeland and spend some time there
> brushing up on my Polish (how easy it is to forget something you
once
> learned). When I got to Warsaw, I learned that one of my cousins
bore
> a
> little girl who's been diagnosed with the Apert Syndrome.
>
> Her name is Martina. She is about 1 1 years old and she just underwent
>
> her first major operation (she spent two months in the hospital).
She
> is
> a very happy child because her parents love her greatly. However,
they
>
> are very poor and are in great need of financial support, which brings
>
> me to the point of this letter:
>
> Do you know if there are any foundations that help children like
> Martina? Medical technology isn't very advanced in Poland yet (as
it's
>
> an emerging market and a developing economy). Perhaps if I could
get
> in
> touch with some sort of a medical organization, Martina could have
the
>
> opportunity to undergo her operations in another country and thus
have
> a
> better chance for a normal childhood? Of course, I'm doing my best
to
> help her parents bet by, but Polish salaries for recent graduates
> aren't
> very high (and certainly not by American standards).
>
> I don't know very much about this disease but thanks to your site,
> I've
> gotten some invaluable information which will help me understand
it a
> little better. I will be most grateful for any information you will
be
>
> so kind to share with me.
>
> Many thanks and very best regards,
> Magdalena Malinowska
>
> Ps. My email address:
>
>
> ______________________________________________________
> Get Your Private, Free Email at http://www.hotmail.com
=========================================================================
Date: Wed, 15 Jul 1998
16:42:15 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Teeter tonsils
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Best of luck to Teeter on the upcoming T & A removal....hopefully
things will
get better after the surgery...and as for being a hypocondriac...I
understand
totally!!!!!! Its me to a tee!!!!!
Best Wishes for a speedy recovery
Jenn(Tampa/St. Pete)
=========================================================================
Date: Wed, 15 Jul 1998
20:08:01 EDT
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From: Jenny Brown <Firefli007@AOL.COM>
Subject: Re: [Fwd: you've got a new friend!!!!!!!!]
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welcome Kelly!!!
we are glad you are here! I am 31 wih Apert's and like you have
a tremendous
group of friends inclding the ones on this listserv! welcome
to the family.
I live in Georgia but will be in LA for a week In the first part of
November.
Is that far from you? Maybe we can meet!
Jenny in Georia
=========================================================================
Date: Wed, 15 Jul 1998
20:16:03 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Hey Jenny
MIME-Version: 1.0
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Hi Jenny,
I am glad I finally got a reply to my message. I
have enjoyed
reading all the messages so far. I live approximately 8 hours away
from
Los Angeles and I'd be in school then, but if you ever come to
the
Sacremento area, please let me know. I live about 10 minutes away from
Sacremento.
Kelly
=========================================================================
Date: Fri, 17 Jul 1998
00:47:25 EDT
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: When does it end?
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Hello everyone!
It's me Lynn! It is 12:30am and I was just getting into bed and
just laid
there looking at Andrew (yes, he's in my bed, that's another problem
all
together). For some unknown reason, I started to cry. That's
not true, I
know the reason. Someone a bit ago mentioned something about
the grieving
process and the steps you take. Well, to put it honestly, I do
not know where
I am. Andrew is almost 2 years old and I don't know why I still
cry
sometimes. Maybe it is because I am sad for everything he has
gone through
and everything he will go through. He looks so perfect to me,
what could they
possibly do to make him anymore beautiful than he already is?
Sometimes I
think to myself, I JUST WANT THIS ALL TO END!!! I want all the
pain and all
the frustration, and all the surgeries to just go away. I don't
think that it
is the doctors and the surgeries that bother me so much. It is
the therapy
appointments. I just want our lives to be "normal" from now on.
We are planning on moving and closing on our house on July 31, but I
don't
feel like we are beginning a new life in a new house. We are
just moving our
location. Nothing will change, we will still have just as many
appointments
as we always did. I am just so sick and tired of the therapy
sessions, and I
don't really feel it is necessary. Maybe we are still having
them because I
feel that is what I am suppose to do. Physical Therapy is a joke,
all the
therapist and I do is chat. Why is she even there? Don't
get me wrong, I
think she has done some wonderful things with Andrew and has taught
us alot on
how to make Andrew limber. But he is doing everything that a
"normal" 2 year
old does. So he doesn't climb stairs that well yet, well it would
help if we
had stairs for him to climb. And why do we have Occupational
Therapy. All
they are really working on is his finger manipulation. I feel
that he uses
his fingers just fine, for heaven sakes, he can pick up individual
peas!!!!
He turns things well and can pick up small objects. He can't
pick up too many
large objects with one hand, but his hands are small, I think that
is normal
(notice no quotes). With everything that goes on in our lives,
between
doctors and therapists, I think they keep us thinking that our lives
are not
meant to be "normal". I just want a typical life for Andrew,
is that too much
to ask?
I just don't know if leaving EI is what I want to do, but I don't think
we
need to see an OT anymore or at least see the OT once a month.
And I know we
do not need to see a PT every two weeks, I think we can put that to
once a
month as well. I do honestly think Andrew needs Speech Therapy,
which I would
keep as every week. Have any of you stopped your therapy sessions
this early
in the game? But like I said, I don't want to stop completely,
I just think
that OT every week is a waste of my time and Andrew doesn't really
need it
every week. What are your experiences with this? I think
I will call my EI
coordinator on Monday morning. What do you guys think about this?
Thank you so much for being my ears tonight. It was too late to
call and talk
to a live human, and I knew that you guys would understand what I am
going
through. I just want it all to stop!!!! Thank you for listening,
and please
give me feedback, I truly need it. Thank you again.
Lynn
=========================================================================
Date: Fri, 17 Jul 1998
02:24:44 -0400
Reply-To: Information exchange and Internet
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From: Leanne Maclean
<lmaclean@NETCOM.CA>
Subject: When does it ever end?
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Dear Lynn,
I think one of the best pieces of advice I was given was from a social
worker at the local rehabilitation hospital when I bumped into her
in a
hallway! I complained about appointments cutting into our 'normal'
family time. She told me it was up to me weigh all the options
and I
had the right to say no to appointments without feeling guilty!
Pretty
simple advice but it made a huge change in how I viewed things.
All of
a sudden I had more control over what we did and why.
I did take Amy to speech but at an early age it was all geared towards
how
we could interact with her at home to encourage her to talk.
A great
resource is the book called "It Takes Two to Talk" by Ayala Manolson.
It
has tons of ideas of how to increase communication.
Amy started Early Intervention at school when she turned three where
she
attended four half days a week for the school year. She continued
half
days when she was four and the last year she attended four full days
per
week (her kindergarten year). Next year she will be going into
grade one.
It was a great program where she received speech, OT and PT, which
meant I
didn't have to run her to those appointments. She will
still be receiving those services in the next year, still at school.
Another parent told me that raising her daughter (who is now 22) was
like a
roller coaster. Sometimes you are very busy with appointments
(especially
pre and post surgery) and then it slows down and you get to coast for
a
while!
On another topic - Lynn - I still haven't received the book in the mail.
Did you get it into the mail with Andrew's picture when you had hoped
to?
Amy is just getting over chicken pox. She came down with them
two days
before a huge party for my mom's 65th birthday and she wasn't able
to
attend. I was pretty disappointed as I was the one running all
the relays
and games for the kids. She had a 'sleepover' at her other Grandma's
and
was able to see her cousin from Vancouver so she wasn't as upset as
I was!
Hope tomorrow is brighter! I'd better go get some sleep as it
is past
midnight here.
Leanne
=========================================================================
Date: Thu, 16 Jul 1998
23:59:10 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Teeter tonsils
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HI Don,
We wish Teeter, and you all, good luck! We just got back from
our ENT
visit today, and Brenna is going to have her T & A's removed too.
I am
relieved as her breathing is pretty bad at nights. I hope that
it will help.
Keep us posted on Teeters recovery. I am a little nervous about
it because
our Dr. told us we may be in the hospital anywhere from several days
to
several weeks. WE opted to wait until August until he returns
from
vacation just in case a problem arises. He said, sometimes young
kids with
small airways have a tough time recovering from this.
Anyways, good luck!
Hugs, RObyn J.
At 08:52 AM 7/15/98 -0400, you wrote:
>Hi everyone -
>
>Welcome to all our new list subscribers. We're just returning
from
>another short vacation at the beach. Judy, Teeter kept saying
that you
>and Nick were 'missing.'
>
>We've been concerned for a while now about the size of Teeter's tonsils
>and her snoring, and more and more lately she complains (even when
she
>first wakes up) of being tired. People ask her how she is doing
and she
>tells them she is worn out. So we scheduled a visit to the pediatric
>ENT associated with our craniofacial group, and he saw her Tuesday
>afternoon (yesterday). I think Teeter won some kind of Grand
Tonsil
>prize for her right one. The doctor took a lot of time and explained
>the narrowing of the bony part of the nasal airway and how the enlarged
>tonsils and adenoids make it even harder to breathe. She goes
in Friday
>to have them removed, with an overnight observation period.
>
>Pretty funny, when we first spoke with the ENT we explained about
the
>discussions we've followed here on the listserv regarding tonsils,
sleep
>apnea, sleep studies, etc., and the details of Teeter's sleeping habits
>(excessive snoring, brief pauses in breathing, etc...) We said,
so
>what's the first step, do you want a sleep study? He laughed
and said,
>no, why bother? He said we'd done our own sleep study and told
him
>everything he needed to know.
>
>So now Teeter could not be happier. She's been going through
a
>hypochondriac phase lately, obsessed with the internal workings of
the
>human body (she can name all the parts of the digestive system:
Your
>mouth, esophagus, stomach, small intestine, large intestine....and
your
>BUTT!) So she is completely thrilled to be going to the hospital again,
>and she thinks she knows everything about having one's tonsils removed.
>She is also very excited about her first loose tooth and had her first
>visit to the family dentist last week.
>
>We're looking forward to a quiet weekend, hopefully I'll get some
web
>pages out there. Janine, Emily is next!!!!!!
>
>-------Don
>
=========================================================================
Date: Fri, 17 Jul 1998
08:52:05 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: When does it end?
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> Thank you so much for being my ears tonight. It was too late
to call and talk
> to a live human, and I knew that you guys would understand what I
am going
> through. I just want it all to stop!!!! Thank you for
listening, and please
> give me feedback, I truly need it. Thank you again.
Lynn,
Talk to your EI counselor. If you have a good one,
it won't be
a problem to take a break from some of the therapy appointments
--
or make them less frequent. What you describe sounds normal (both
Andrew's progress and your feelings) and I think you should do what
you need to make your life more comfortable.
The only therapy we've ever had to deal with
here is speech --
and my son didn't even start that until he was 3.5. Nine years
later
HE got tired of it and asked to quit. The speech therapist wrote
that up as "transportation problem" (he wouldn't get in the car to
go) instead of refusal of treatment so we could get him back
in if
he changed his mind. I hope you're working with equally reasonable
folks.
Judy
=========================================================================
Date: Fri, 17 Jul 1998
07:09:09 -0600
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: WHEN DOES IT END
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Lynn,
I went through the same thing
and still do from time to time. It
is usually like you, in the middle of the night and I am just tired
from
lack of sleep, and tired of everything else!! I have a 9 year
old daughter
that I try to continue doing things with her as we did before all of
these
appointments. We have sleepovers, parties, and sports.
There are many
times that Nikita will say can so and so come over tonight? In
my mind my
answer is NOOOOOO, I am so tired and I just want to sit down and do
nothing, but I don't say that. I always think about it and if
nothing
different is going on I agree. I usually get enjoyment out of
seeing her
have a good time. Daryl enjoys the company too.
Therapy used to be a hassel
for me too. We saw the PT, on Mon. and
Wed., the OT on Mon. and Tue., and the ST on Wed. and Thu. and the
Teacher
from the Child Dev. Center on Fri. I couldn't go anywhere without
having
to be back for therapy. Afterwards, I couldn't leave because
Daryl was
tired and needed a nap. It seemed never ending.
It has been a big help when
Daryl turned 1year and started to go to
the CDC. He only goes from 12:15 to 2:45pm, but that is 2 1/2
hours that I
can go to Walmart, grocery store, or just come home and watch TV. Daryl's
therapists see him there on Mon. thru Thurs. Do you have a CDC
that Andrew
can go too? I doesn't cost us anything. The bus picks up
the kids within
a 5 mile radius, but I still carry Daryl to the center. It sounds
like the
ongoing therapy is stressing you out and a CDC could help.
Daryl is doing well and
functioning like a 2 year old, but I still
keep the therapy, because they are always behind a little in the hands
just
because of physical problems and not mental. I feel like if something
comes up later that Daryl is falling behind on, that he will be used
to
seeing the OT and won't have to get used to her again. It is
up to you and
know that what ever you decide it won't be a wrong decision.
You have to
keep your head above water too! Good luck and God Bless!
Denise Graham
=========================================================================
Date: Sat, 18 Jul 1998
09:04:36 -0400
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From: Alice Lynch <goddess@CAPITAL.NET>
Subject: Re: When does it end?
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Dear Lynn:
There is light at the end of this tunnel. Go with what you really
believe
in your heart. If you think the therapies are to much, cut down
to what is
manageable for you and your family. The only one who can make
your world
"normal" is you. When Andrew starts Early Intervention you'll
see a big
difference in your life. My son, Colin, started Early Intervention
at
three and it was a wonderful program. He road the bus to school
and loved
it. He got all his therapies at school and came home to play
and be a boy
just like all the other kids.
I'm 9 years into this experience with Colin and sometimes I still cry.
Usually when the tension gets to much or just because as you said,
I'd like
it all to stop. I let myself cry and then I think about how far
we've come
in the 9 years. The things I worried about when Colin was 2 are
gone and
replaced with other things. That's what life is all about.
Stages and
phases and this too will pass.
Remember that moving is a big emotional experience in itself.
Some of your
emotions and tears are tied up in the move. Changes are tough.
Any kind of
change requires us to reevaluate our life and situation.
My advice is to take a deep breath, let it out and go take a walk.
Think
flowers and sunshine, fresh air and blue skies. Allow a smile
to come to
your lips and remember that normal is anyone's best effort.
Alice.
----------
> From: Lynn Thornquist <Thornq@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: When does it end?
> Date: Friday, July 17, 1998 12:47 AM
>
> Hello everyone!
>
> It's me Lynn! It is 12:30am and I was just getting into bed
and just
laid
> there looking at Andrew (yes, he's in my bed, that's another problem
all
> together). For some unknown reason, I started to cry.
That's not true,
I
> know the reason. Someone a bit ago mentioned something about
the
grieving
> process and the steps you take. Well, to put it honestly, I
do not know
where
> I am. Andrew is almost 2 years old and I don't know why I still
cry
> sometimes. Maybe it is because I am sad for everything he has
gone
through
> and everything he will go through. He looks so perfect to me,
what could
they
> possibly do to make him anymore beautiful than he already is?
Sometimes
I
> think to myself, I JUST WANT THIS ALL TO END!!! I want all
the pain and
all
> the frustration, and all the surgeries to just go away. I don't
think
that it
> is the doctors and the surgeries that bother me so much. It
is the
therapy
> appointments. I just want our lives to be "normal" from now
on.
>
> We are planning on moving and closing on our house on July 31, but
I
don't
> feel like we are beginning a new life in a new house. We are
just moving
our
> location. Nothing will change, we will still have just as many
appointments
> as we always did. I am just so sick and tired of the therapy
sessions,
and I
> don't really feel it is necessary. Maybe we are still having
them
because I
> feel that is what I am suppose to do. Physical Therapy is a
joke, all
the
> therapist and I do is chat. Why is she even there? Don't
get me wrong,
I
> think she has done some wonderful things with Andrew and has taught
us
alot on
> how to make Andrew limber. But he is doing everything that
a "normal" 2
year
> old does. So he doesn't climb stairs that well yet, well it
would help
if we
> had stairs for him to climb. And why do we have Occupational
Therapy.
All
> they are really working on is his finger manipulation. I feel
that he
uses
> his fingers just fine, for heaven sakes, he can pick up individual
peas!!!!
> He turns things well and can pick up small objects. He can't
pick up too
many
> large objects with one hand, but his hands are small, I think that
is
normal
> (notice no quotes). With everything that goes on in our lives,
between
> doctors and therapists, I think they keep us thinking that our lives
are
not
> meant to be "normal". I just want a typical life for Andrew,
is that too
much
> to ask?
>
> I just don't know if leaving EI is what I want to do, but I don't
think
we
> need to see an OT anymore or at least see the OT once a month.
And I
know we
> do not need to see a PT every two weeks, I think we can put that
to once
a
> month as well. I do honestly think Andrew needs Speech Therapy,
which I
would
> keep as every week. Have any of you stopped your therapy sessions
this
early
> in the game? But like I said, I don't want to stop completely,
I just
think
> that OT every week is a waste of my time and Andrew doesn't really
need
it
> every week. What are your experiences with this? I think
I will call my
EI
> coordinator on Monday morning. What do you guys think about
this?
>
> Thank you so much for being my ears tonight. It was too late
to call and
talk
> to a live human, and I knew that you guys would understand what I
am
going
> through. I just want it all to stop!!!! Thank you for
listening, and
please
> give me feedback, I truly need it. Thank you again.
>
> Lynn
=========================================================================
Date: Fri, 17 Jul 1998
11:04:27 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Belinda Vicars
<NephiRose@AOL.COM>
Subject: Re: When does it end?
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Lynn,
My heart goes out to you. It sounds like you are suffering
from "burn-out"
in some ways. I have stopped some therapy (those from the state
services)
because they were reduplicating the services I was already receiving
from the
county and others that my health insurance provides. There is
only just so
much company I can stand :). For a while, I thought my home was
the stomping
ground for every health coordinator. It has tapered. Sarah
V. almost two.
There are times when I wish I could just get on an airplane and leave
for a
week or so. Wouldn't it be great if there was a retreat for mothers
like us?
Hang in there, kiddo. If it gets too tough, I've a spare room
:) Seriously.
(And you don't even know me. How's that for adventure?)
Belinda
=========================================================================
Date: Fri, 17 Jul 1998
10:26:15 -0700
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From: Amanda / Cathy
Curtis <cam@CNW.COM>
Subject: Re: When does it end?
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Lynn and to all of you-
What is Normal anyway? My heart goes out to all of
you. Having Aperts
myself I have faced many obstacles in the race of life. Even though
we have
different appearances, we are just the same as anyone else. Sometimes
I
forget I have Aperts. I guess it is because it is not a really big
issue. Of
course I have never seen the beginning of this special lifetime of
differences. Please- No one lose hope. Sometimes you think that this
will
never end, believe me, there is and will be a time, when you can sit
back
and saw that was a tough race. If you stick together you can overcome
anything. I have had 35 surgeries. I will be 17 on July 31st. My last
surgery was 3 years ago. I may have to have jaw surgery next year.
I will be
getting my wisdom teeth out this wednesday the 22nd. My mother always
used
to tell me- "You can either feel bad for yourself and have aperts or
bear a
good attitude and have aperts. Nothing has ever hurt me more, than
to have
someone who is "normal" in other words- not bear my differences, stare
and
gauk and tease me. No surgery or treatment could ever huret worse than
being
different than everyone else. Sometime ago, I learned to face it all.
Now I
just stare back. I am probably not making any sense what so ever. Although,
I love people and I love to make others feel better. I just want Lynn
to
know, she is not alone. I love all of you and consider you all my second
family. It is nice to know that there are people out there who know
how I
feel. I just recently finished a novel I wrote. And some time ago I
finished
a poem I wrote. I will try to attach it to this message. Maybe it'll
help
you to feel better!
Sorry this is so long. Thanks!
Amanda
P.S. Here it is. I wrote this when I was a freshman! I am now a Senior.
Enjoy!
-----Original Message-----
From: Lynn Thornquist <Thornq@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Thursday, July 16, 1998 9:50 PM
Subject: When does it end?
>Hello everyone!
>
>It's me Lynn! It is 12:30am and I was just getting into bed
and just laid
>there looking at Andrew (yes, he's in my bed, that's another problem
all
>together). For some unknown reason, I started to cry.
That's not true, I
>know the reason. Someone a bit ago mentioned something about
the grieving
>process and the steps you take. Well, to put it honestly, I
do not know
where
>I am. Andrew is almost 2 years old and I don't know why I still
cry
>sometimes. Maybe it is because I am sad for everything he has
gone through
>and everything he will go through. He looks so perfect to me,
what could
they
>possibly do to make him anymore beautiful than he already is?
Sometimes I
>think to myself, I JUST WANT THIS ALL TO END!!! I want all the
pain and
all
>the frustration, and all the surgeries to just go away. I don't
think that
it
>is the doctors and the surgeries that bother me so much. It
is the therapy
>appointments. I just want our lives to be "normal" from now
on.
>
>We are planning on moving and closing on our house on July 31, but
I don't
>feel like we are beginning a new life in a new house. We are
just moving
our
>location. Nothing will change, we will still have just as many
appointments
>as we always did. I am just so sick and tired of the therapy
sessions, and
I
>don't really feel it is necessary. Maybe we are still having
them because
I
>feel that is what I am suppose to do. Physical Therapy is a
joke, all the
>therapist and I do is chat. Why is she even there? Don't
get me wrong, I
>think she has done some wonderful things with Andrew and has taught
us alot
on
>how to make Andrew limber. But he is doing everything that a
"normal" 2
year
>old does. So he doesn't climb stairs that well yet, well it
would help if
we
>had stairs for him to climb. And why do we have Occupational
Therapy. All
>they are really working on is his finger manipulation. I feel
that he uses
>his fingers just fine, for heaven sakes, he can pick up individual
peas!!!!
>He turns things well and can pick up small objects. He can't
pick up too
many
>large objects with one hand, but his hands are small, I think that
is
normal
>(notice no quotes). With everything that goes on in our lives,
between
>doctors and therapists, I think they keep us thinking that our lives
are
not
>meant to be "normal". I just want a typical life for Andrew,
is that too
much
>to ask?
>
>I just don't know if leaving EI is what I want to do, but I don't
think we
>need to see an OT anymore or at least see the OT once a month.
And I know
we
>do not need to see a PT every two weeks, I think we can put that to
once a
>month as well. I do honestly think Andrew needs Speech Therapy,
which I
would
>keep as every week. Have any of you stopped your therapy sessions
this
early
>in the game? But like I said, I don't want to stop completely,
I just
think
>that OT every week is a waste of my time and Andrew doesn't really
need it
>every week. What are your experiences with this? I think
I will call my
EI
>coordinator on Monday morning. What do you guys think about
this?
>
>Thank you so much for being my ears tonight. It was too late
to call and
talk
>to a live human, and I knew that you guys would understand what I
am going
>through. I just want it all to stop!!!! Thank you for
listening, and
please
>give me feedback, I truly need it. Thank you again.
>
>Lynn
>
=========================================================================
Date: Fri, 17 Jul 1998
15:32:45 EDT
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From: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: When does it end?
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Lynn,
I can certainly identify where you are coming from. The first
few years were
definitely the toughest for us. Like you, we ran between doctor's
appts. and
therapy sessions. Believe me, it DOES get easier. First
of all, once you get
involved in an Early Intervention Program most therapies can be done
there.
Also, as Andrew gets older the therapies can often be cut back or eliminated.
Your input is important and you need to feel that you have some control
over
your life. You need someone to help you make these decisions.
My
pediatrician happens to be the person who I call when feeling the way
you do
now. He helps me to look at the entire situation and weigh the
pros and cons.
The first four-five years of Tim's life were a blur, which is why we
waited 8
years to have our third child. I couldn't imagine doing the running
around
with a baby. Maybe you should consider taking a break from therapy
in order
to regroup and reassess. Hang in there.
Beth Tolson
=========================================================================
Date: Fri, 17 Jul 1998
19:02:10 -0400
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: When does it end?
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Lynn,
That letter could have been written by me. I have had all the
feelings of
when will this all end for the last week or so. Jacob just turned 2,
maybe
it has to do with the age! I keep wondering when will our life
get back to
normal but then I have to remember we have a new normal. We have
many
sleepless nights just listening to Jacob breathe, snore, snort, gasp
...
and wonder if we should get him a trach. But then all day he
seems great,
active, playing and basically fine and I struggle with what is best
for
him. We are also faced with surgeries being on hold yet we know
they must
get done soon. If only I had a crystal ball to see what would happen
if we
go through with surgeries without a trach. It has also been difficult
to
give the attention needed to his sisters too (5yrs, 6mos). I
worry about
our 5 year old but I guess she is fine. She loves her brother but sometimes
resents our time with him. I guess I sometimes resent all we
have to do
with him too. I would not trade him for the world but sometimes
I would
love to be able to pick up at any time of the day and just go without
having to drag monitors, oxygen, worry about therapy session times
...It's
good to hear others have the same feelings and frustrations. I guess
the
best advive is to take one day at a time and do the best we can.
Colleen and gang
=========================================================================
Date: Sat, 18 Jul 1998
08:15:03 EDT
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Thank You!!!
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Hello to my family!!!!
I want to thank everyone for the immediate replies. It truly helped.
After I
wrote my message, I went outside to get some (humid) fresh air and
just sat
outside and cried. Boy did I feel better after doing that.
I guess you have
answered my question about stage of grievence. I am not grieving,
I am just
stressed out!! That is no surprise with everything that we go
through. It is
Saturday morning and I am doing much better. I think I will definately
have a
talk with Andrew's EI coordinator on Monday morning. By the way,
we are
already in EI and have been there since Andrew was
2 1/2 weeks old. After this, we start going to school for his
treatment. But
I wonder, will he still need it by then?
Thank you very much for the book idea, I think I will go to the bookstore
and
buy it. Also Andrew is going to start playgroup at the EI center
when he
turns two, so I think that interacting with other kids and hearing
them talk
will be helpful. They will also work on behavioral issues, which
is something
that he truly needs, but what 2 year old doesn't. By the way,
the hitting and
kicking has definately stopped and he no longer bangs his head.
He will
sometimes, but that is when he is extremely tired and frustrated.
Thank you
for all the support and help.
Well I better get going, Andrew just woke up (in a fabulous mood) and
I want
to spend sometime with him before I go to work.
Thank you again for all your replied, they really and truly helped.
Just
knowing that I have all of you outthere is enough love to get me through
this.
You are a wonderful group of people and I think things would be alot
worse if
I didn't have this listserv to come to and express my true feelings,
and
actually have someone respond that understands. Other people
in my life,
friends, family, and such try to understand, but cannot not completely
understand.
Talk to you all later.
Lynn
p.s. Thank you for the download and I would love to read the book
sometime
because I am doing the same thing about living with a child with Apert.
=========================================================================
Date: Sat, 18 Jul 1998
08:25:49 -0500
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Sender: Information exchange and
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From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: The pain of child birth:
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Dear Friends:
My heart often breaks for Seth. Wednesday when we went for the
CT, he
wanted to know if he would look and sound different when he woke up
from
general anesthesia. As you can tell we are trying to prepare
him for the
mid-face advancement in August. When the nurse gave him the choice
of
staying awake and being very still, he quickly agreed. He did
extremely
well.
I don't think that the pain ever goes away. It is always just
under the
surface, just waiting for the opportunity to bubble out. In a
way I am
lucky since I have raised two other children and know how painful that
was
at times. Our oldest chose such a wrong path that I prayed to
God every
night to save him and bring him back to the fold. God saved him
by sending
Seth. It was Ethen, with his dyed black hair, black trench coat
and combat
boots, that held baby Seth in the hospital as Rick and I cried.
Ethen
began to spend more time at home playing with his little brother than
out
with his punk friends. He eventually moved back home and went
back to
school.
One day as we were visiting, Ethen said, "When Seth goes to school I
am
going to hang out in the play ground and if anyone gives him a hard
time
I'm going to...." I interrupted him and said, "You're going to
beat up a
five year old?" At which point, Ethen had to laugh. But
that is how
protective Ethen is of Seth.
Seth has actually had a much better school experience than Ethen ever
did.
We could always count on Ethen getting beat up on the first or second
day
of class. He rarely did his school work and started skipping
class in
kindergarten. I hated parent teacher conferences. The teacher
would
proudly show the parents in front of us all the work their child had
done.
When it was our turn, all she showed us was page after page of Ethen's
name
at the top of a blank work sheet. He took tests well and knew
the material
but refused to do the daily work. On the other hand, I love going
to
Seth's parent teacher conferences. He is very productive and
his teachers
really enjoy him.
Lynn and everyone else, especially those with small children, hang in
there. Things do get much better as they get older and the surgeries
are
fewer and further between. Don't hesitate to ask for help.
There is
probably some sweet women in your church who would love to spend some
time
with your little one (or little ones) while you take a nap, a bubble
bath
or go for a walk. Don't forget your mate. It is hard, but
make time for
each other. During the early years when Seth had to have so many
hand
surgeries, there were times when I didn't think I could take
any more (the
lack of sleep, worry, fear). That was when I would end up at
my doctor's
office in tears and he would gave me a prescription to Xanax (I think).
It
really helped to take the edge off and gave me a chance to get centered
again.
After a while we discontinued most of the services or had them done
at the
child care center or school. For us, sending Seth to daycare
was a
blessing. Seth learned to compete with other children, made friends,
became independent and I went to work where I had other concerns to
occupy
my mind besides Seth's needs.
After a two year and much needed rest Seth is facing another surgery.
A
new cycle begins. When I start feeling the familiar panic start
to close
in I have to remember "this too shall past."
Love to all of you, Dori
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Sat, 18 Jul 1998
15:34:51 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Nicole's Surgery
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Hi all,
Yes, it finally happened Nicole's cranial vault remodeling and frontal
advancement surgery took place on Thursday 07/16. She is doing
great.
After surgery there was no need to keep her on the breathing tube she
was breathing fine on her own. That made us real happy.
She is still
in ICU but doing fine. She does have a lot of swelling especially
around the eyes, but we are noticing that the swelling around her face
is going down. We want to thank you all for praying for us throughout
the past couple of months. I know we did not let you all know
of the
new surgery date, only because there had been so many dates and this
one
was iffy since she had a cold last week I just didn't want you guys
to
have to start sending e-mails to us like you have been before which
I
think was great. But I just didn't want you guys to get tired
of us.
We came home for a couple of hours to freshen up, because boy did we
need it, you can imagine and you all well know the feeling. Our
bed is
located in the ICU waiting area you know that nice stiff couch.
But hey
at least it's not the floor. We left my sister at the hospital
with
Nicki while we are away. We also had to stop and see the other
kids who
miss us all. Well, I'll let you all go now have to get back to
Nicki.......
We will e-mail again once we are home with our little darling....talk
to
you all soon...
Raquel & Jack....
=========================================================================
Date: Sat, 18 Jul 1998
15:57:06 EDT
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From: Jenny Brown <Firefli007@AOL.COM>
Subject: Re: Thank You!!!
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Hello Lynn and everyone else out there!!!
Just wanted to say HANG IN THERE!!!!!!! I don't know what
it is like to be a
parent yet, for that matter aparent with a child with Apert's, but
I do know
what it's like to be born with it. Some days it really does hurt;
not
physically, but the sting of stares and jeers and taunts strikes deeps
and
hard.
The secret to my success has been to surround myself with great friends.
Like
Amanda, sometimes I even forget that I have it!! My band
director in high
school even got upset with me when I rited to explain to him how i
could not
wear white gloves as part of our uniforms!! He said "jenny, WHY
not, why
can't you get gloves?" And i replied welll " I have a little
problem with my
hands. " he looked stunned and replied OH MY goodness I completely
forgot!!
the biggest compliment I could have ever gotten!!
I have to admit that being 31 and watchiing all my friends get married
start
families, etc has been HARD!!!! Coming to terms with the fact
that i may not
be sexually attractive has been a hard pill to swallow. I put
up a brave
face, but it is hard sometimes. And then i am reminded
that GOD DONT MAKE NO
JUNK!!!!! I like the psalm that reads "before you were
born, I knew you,
Within your mother's womb I formed you!!
And all the world is right
again.
Life had been very good to me. I have been blessed by a great
job that I
love, great friends, a wonderful family and I am very lucky inm so
many
ways!!!
This is rambling on a bit, but I just wanted all you who are parents
to know
that from the bottom of my heart I am in awe of you. You all
have a daunting
task. But never give up!!
Keep doing what you're doing.
I am car shopping on the net... is this a cool age we are living in
or what!!!
I had a car accident on Sunday and my cool little civic met a
very untimely
demise!!!!! So now I am in search of a car... then a house.
and thenmaybe
i'll have time to search for "MR RIGHT" heheheehhe
Sorry this is sooooo long!
Jenny in Georgia
=========================================================================
Date: Sat, 18 Jul 1998
23:16:28 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Nicole's Surgery
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Jack and Raquel,
I am glad to hear Nicole's surgery was a success. Hope she is
back to
feeling gppd again real soon. Give her lots of love!!!
I'm sure it wont
be a problem! :-)
Hugs, Robyn J.
=========================================================================
Date: Sun, 19 Jul 1998
21:35:47 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: genetics and tonsils
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At 08:39 AM 14/07/98 -0400, you wrote:
>Given the complexity of the events that have to occur, isn't it a
>miracle that most babies are born WITHOUT major problems/differences?
>---Don
Agreed - and there is no way I would swap for my stroppy, well-behaved, intelligent and fun-to-be-with Amy for any of them.
Good luck to Teeter for the T&A op. Interesting point about the cold-versus-warm food postop, must remember that.
Cheers,
Ann
NZ
=========================================================================
Date: Sun, 19 Jul 1998
21:35:46 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: back problems
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Kia Ora Colleen
I asked Amy's Orthopaedic Surgeon only a few weeks ago about this as one of the early papers on Apert Syndrome show a child with scoliosis. His opinion is that back then a lot of things were lumped together as being part of a syndrome (not just with Apert) but as time has gone on they have become more specific in their diagnoses, and things like this are now recognised as being separate from the syndrome - and suggested that in future some of the things we accept now as belonging to a particular syndrome may show to be unrelated.
However, he automatically checks the back of any child with feet problems because there can be links.
All the best
Ann
NZ
Back in the stuffy city after 4 and a bit days at the seaside - a couple
of VERY stormy nights but glorious sunny days even though it is still meant
to be winter.
=========================================================================
Date: Sun, 19 Jul 1998
21:35:53 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: When does it end?
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Kia Ora Lynn
Sounds to me as though you are a pretty normal mother! I didn't stop till WELL past Amy's 2nd birthday I can assure you! I do think that 2-3 years old space is the toughest because one has got over the initial shock but hasn't yet reached the stage where the surgeries have stopped for a while.
Some years ago someone spoke to me about Chronic Sorrow. It is the sadness that stays with you throughout your life because of a major grief event. It isn't depression, that is something quite different. This was actually in relation to miscarriage, but I can recognise it in myself sometimes when I look at Amy. It is the knowledge that your life has been touched in a way that you had never planned, and your life will never be the same again - and your child has got a tougher road ahead than you would ever wish for them. You have recognised and dealt with your own grief, and accepted what has happened in your life, accepted the changes in yourself, and now you want to move on ...
BUT you are grieving for the child you see every day who has to deal with soooo much!
AND we aren't allowed to let it go because we have to keep on facing it again and again. When the physio-therapist comes in the door it is because our child is "different", when the occupational therapist comes in the door ..., when the speech therapist comes in the door ..., when we have to go to the paediatrician, the ENT surgeon, the orthopaedic surgeon, the plastic surgeon, when you have to deal with the insurance companies, etc, etc, etc. We deal with it again when our child goes to preschool, then school, when they are invited to birthday parties, or not invited to birthday parties, when they miss out on events because of surgeries or clinics (I change Amy's clinic or doctor appointments if they clash with school photo day - I don't want any class photos with her missing!)
We are not allowed to just accept our child as they are and move on with our lives. We are surrounded by all these people who are there to "help" in the terms of their profession.
And sometimes we have to stop and say "No thanks. My child is doing just fine at the moment, and I would like them to have some time without intervention. How about coming and seeing us in six months."
On top of that, every time we walk out the door we know somewhere today we are going to meet someone who has never seen a child like ours, and we are going to have to deal with that as well.
But don't despair. It does get better. It gets better because we do start dropping off the professionals we don't believe our child needs any more, we gain more confidence in the ability of our child to do what is right for them and the ability of ourselves to cope with life and its out-of-the-ordinary challenges. We grow stronger in ourselves, we can smile at those who stare (and most of them do smile back) and can delight in the way our very, very special children grow into caring, wonderful human beings who know more about human nature than we could possibly teach them.
And then we have a few years without surgery, we stop being stressed, we start looking our age instead of ten years older, and we have the freedom to be ourselves.
And Andrew is a real cutie who is worth every bit of it - thanks for the photos Lynn.
Accept your tears for what they mean, and let them flow because grief is appropriate in our lives and tears can be very healing. However, if you are finding the grief is crippling you, do find an empathetic counsellor who will let you talk it through - bottling it up inside isn't healthy.
And heck, why not shift house in the middle of it all?! No point in making life easy for yourself!!
Take care, it does get better.
Hugs
Ann
NZ
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Date: Sun, 19 Jul 1998
09:00:29 EDT
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From: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: Nicole's Surgery
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I know ya'll are glad to FINALLY have this one behind you!!!! Hope she
continues to have a speedy recovery
Jenn(TAmpa/St. Pete)
=========================================================================
Date: Sun, 19 Jul 1998
10:36:57 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Nicole's Surgery
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So glad to hear you are finally on the other side of this surgery!!!!!
We
will continue to pray for you as she recovers. However, I think
you'll be
amazed at how quickly she is back to herself!!!!! I know we were!
Take
care and keep us posted on Nicole's recovery.
Robin Hill (and Carmen Rae who is trying so hard to crawl!!!! Oh MY!)
----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Nicole's Surgery
> Date: Saturday, July 18, 1998 3:34 PM
>
> Hi all,
>
> Yes, it finally happened Nicole's cranial vault remodeling and frontal
> advancement surgery took place on Thursday 07/16. She is doing
great.
> After surgery there was no need to keep her on the breathing tube
she
> was breathing fine on her own. That made us real happy.
She is still
> in ICU but doing fine. She does have a lot of swelling especially
> around the eyes, but we are noticing that the swelling around her
face
> is going down. We want to thank you all for praying for us
throughout
> the past couple of months. I know we did not let you all know
of the
> new surgery date, only because there had been so many dates and this
one
> was iffy since she had a cold last week I just didn't want you guys
to
> have to start sending e-mails to us like you have been before which
I
> think was great. But I just didn't want you guys to get tired
of us.
>
> We came home for a couple of hours to freshen up, because boy did
we
> need it, you can imagine and you all well know the feeling.
Our bed is
> located in the ICU waiting area you know that nice stiff couch.
But hey
> at least it's not the floor. We left my sister at the hospital
with
> Nicki while we are away. We also had to stop and see the other
kids who
> miss us all. Well, I'll let you all go now have to get back
to
> Nicki.......
>
> We will e-mail again once we are home with our little darling....talk
to
> you all soon...
>
> Raquel & Jack....
=========================================================================
Date: Sun, 19 Jul 1998
10:55:37 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Nicole's Surgery
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Hi Raquel and Jack and Nicole! Wow! Way to go. You
did it. It's done!
Now on to sweet healing and summertime when the livin is easy.
Pat and EvaJessie in Calgary
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
=========================================================================
Date: Sun, 19 Jul 1998
10:55:39 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: The pain of child birth:
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Hi Dori. I think these surgeries must get harder as the kids get
older. We
not only have to assure ourselves that it is necessary but somehow
let the
kids know that all will be well. It must be very strange for
them to wake
up looking different. The same person but looking out from a
changed face.
I'm guessing Seth is right at the age now when he will be so much more
aware
of himself than even just a couple of years ago (how they seem
to grow once
they get into school!) For that reason, I'm glad we are tackling
tissue
expansion now instead of 3 years from now.
I know how you feel, the pain that sits dormant waitng for a chance
to
reintroduce itself to me. I still get that sense from EvaJessie,
too. I
often will watch her while she's sleeping, wondering how she copes
with all
this. Wondering what's happening inside that mind of hers.
That's great that Seth was able to be still for the CT scan. How
is he with
the idea of surgery? Does he like his doctors?
What a story about your older child, Ethen. It really puts a point
on
things doesn't it? One wonders about life's events and
the way things turn
out. Ethen sounds like quite the young man, having been to the
edge and
back already at this age.
Well, I mostly wanted you to know that I heard you when you sent this note.
Keep us posted on Seth's journey.
Pat and EvaJessie in Calgary
ps. Sent Seth a booklet about the Royal Tyrrel Museum of Paleontology.
Hope he enjoys it.
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
=========================================================================
Date: Sun, 19 Jul 1998
10:55:35 -0600
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: When does it end?
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Hello Ann. As always you have the voice of one who knows how to
be gentle
with oneself. So important. I read your words to Lynn and
found myself
saying yes yes, that is how it is. Although we got off lucky
-- no
therapists appointments to keep up to -- your words rang true for me,
as I
hope they do for you Lynn.
Now I know EvaJessie's situation is quite different from Apert,
but I do
recall a time when she was a wee thing -- a couple of months old --
and the
child development centre wanted to know if they could come to our home
once
a month and test her for development. I said no thanks.
Just let her be a
baby for a while.
When I saw your note, I wanted so much to say something helpful or useful,
but had no words for you, other than thinking of you.
Now that Leanne and Ann and others have written, I'm just so glad that
we
have this listserv to get that kind of feedback. And what great
notes from
everyone.
Well, I'm not adding to the discussion, just wanted to say I'm listening.
Hug that kiddo for me. btw I just got his picture.
Thanks. He looks
quite huggable to me!
Pat and EvaJessie in Calgary
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
=========================================================================
Date: Sun, 19 Jul 1998
13:28:47 -0400
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: Zaengle-surgeons
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Hello, this message is basically for the Zaengle family. Hope
Quentin is
recovering from T&A surgery nicely. Thank you for the info
on back
surgery. I thought I remembered reading about a back surgery
in Quentin's
letter. Our orthopaedic doc also said not related to Apert.
However, in
addition to Apert syndrome, Jacob has a duplication in part of the
10th
chromosome which could mean additional problems besides those from
Apert.
Any chance Quentin has this duplication?? Now to my question, who was
the
surgeon you had at CHOP for the back surgery and T&A surgery?
I am at the
point where I want to get second opinions on the sleep apnea issue
(trach
issue) and on his back (although I have a feeling surgery is the best
way
to go for that). Jacob did have frontal adv. done by Dr. Whitaker
at CHOP
last Aug but he is not scheduled to return for cranio clinic until
fall and
I want to get these opinions sooner. CHOP deals with Apert much
more than
Geisinger. By the way, where do you live?
Thanks in advance for your help. You can e-mail me direct
or call
(717)837-1752).
Colleen and gang
coljones@ptdprolog.net
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Date: Sun, 19 Jul 1998
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Nicole's Surgery
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Raquel,
I'm so glad to hear that Nicole had her surgery and is doing well.
I don't
know about you, but it was tough after Andrew had his frontal advancement,
he
looked so much different. He just didn't look like himself until
I got used
to it, but now I think he looks much better. And he will be happy
with the
results in the long run. Hope everything continues to go well.
It looks like
God said, "Now is the time". Talk to you later.
Lynn
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Date: Sun, 19 Jul 1998
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Thank You!!!
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Jenny,
Good luck with "Mr. Right", but you must do the things that YOU need
first.
Trust me, marriage is tough!!! But in the same breath, marriage
is nice!!!
Thank you for the encouraging words to all of us parents. It
is very tiring
sometimes. I am sorry to hear that you got into an accident and
your car it
"dead", but the good thing is that you are okay. That is all
that matters.
Lynn
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Date: Sun, 19 Jul 1998
14:39:58 EDT
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From: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: When does it end?
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Ann,
Thank you for that inspiring message. I hope it was just as inspiring
for
everyone else. I have to say that you write beautifully and honestly.
I know
buying a house at this time was not the best thing, but our one bedroom
apartment was getting a little crowded for our taste. I'm glad
that you
received the photo, I was wondering if anyone did. I still have
more to send
out, but waiting for printer ribbon. Thank you again.
Lynn
=========================================================================
Date: Sun, 19 Jul 1998
17:39:54 EDT
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From: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: When does it end?
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Hello to All:
We are just back from a short vacation at the beach in Montauk. Furthest
point
East on the south shore of Long Island. We had a great vacation.
I came back
to the mail here and can truly identify with Lynn's feelings.
I loved Ann's
letter with the chroic grief. I think that describes how I am
exactly. This
past year has been amazing in so many ways. Every once in a while
the stress
builds up and I just lose it as well. I have met a woman with
a daughter who
has Acardia syndrome. I am sure you never heard of it.
The stats on it are
only 300 people in the world so far have it. Now that's rare.
Anyway, this
woman is phenomenal. She has the best attitude I have ever seen.
She told me
that whenever she's not doing something for Tara, doctor,hospital,
surgery,
therapy, etc. she feels like she's missing something she forgot.
It's almost
like she doesn't know what to do with herself. She also said
that after every
surgery, she takes a day totally for herself to a day spa or something
like
that. I have started to do it also. We need to unwind after
all that we do,
mentally and emotionally.
Anyway, glad to hear Nicole's surgery went well. Hope she is home
soon and
recovering nicely.
Hope everyone else is ok.
Best wishes,
Janine
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Date: Sun, 19 Jul 1998
18:31:20 EDT
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From: Tony & Sandy
Deakins <TDeakins1@AOL.COM>
Subject: Re: Teeter tonsils
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Apnea is not at all uncommon for Aperts children as is also the case
with
enlarged tonsils. With our daughter, we were told not to allow
her tonsils to
be removed no matter what. Her snoring was reduced and her sleeping
improved
after her last midface advancement. You may want to gain a second
opinion
regarding the tonsils and I would think that a sleep test might provide
a more
comprehensive study of the probable causes of snoring, Apnea, and other
things
that impact sleep. In any case, best of luck to Teeter and yourselves.
Tony Deakins
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Date: Sun, 19 Jul 1998
22:01:08 EDT
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From: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: When does it end?
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Ann
Your words are sooooo true!!!!
Beth Tolson
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Date: Mon, 20 Jul 1998
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: When does it end?
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Hi All
Thanks Janine for the suggestion about having a spa after every surgery - the problem is going to be finding one where I can have a good howl without anyone looking! I think adding a massage to that and having counselling so I can pour out all my concerns and anxieties should let me cope quite well with the next lot.
My immediate reaction to your story about Tara's mother was that she was coping too well for her own good, but it sure sounds as though she knows how to care for herself.
It looks like we could be going into more surgery with Amy in the next year or so - bipartition and distraction are the two words being used but I don't know what they plan to do yet. We will be going in for xrays and a ct scan within the next six months so they can figure out what they want to do. Apparently the children cope better psychosocially if reconstruction is done in these middle years, which ties in with what you were saying Pat about Seth being ".. at the age now when he will be so much more aware of himself than even just a couple of years ago" (Amy and Seth are around the same age, a couple of years older than EvaJessie I think) and "For that reason, I'm glad we are tackling tissue expansion now instead of 3 years from now."
It is a tough call. Amy has a really good self image at the moment and she could well fly through intermediate and high school without any concern at all about teasing. Alternatively she could hit a bad time and we could lose all the benefit of what we have done to ensure that good self image developed. Either way we could make the wrong decision and I am not relishing having to make it. Regardless of what they do to her head shape her hands and feet will continue to look different, so we aren't going to get away from the teasing.
And Pat you have said it so well "... the pain that sits dormant waiting
for a chance to
reintroduce itself to me. I still get that sense from EvaJessie,
too. I
often will watch her while she's sleeping, wondering how she copes
with all
this. Wondering what's happening inside that mind of hers."
For me, just read "Amy" in place of "EvaJessie". I guess the absence
of nightmares, and the happy and chatty talking she does in her sleep,
indicates that Amy has no real concerns about her world.
Dori - I'll let Amy know that Seth stayed still for the CT scan and see if she can do it too! How wonderful to be able to do it without an anaesthetic!
Back to school today.
Cheers
Ann
NZ
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Date: Tue, 21 Jul 1998
02:27:17 -0500
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From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: Nicole's Surgery
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It is great to know that Nicole's surgery was a success. I am
sure she
will be feeling better soon. Please, give her all our love.
We are
thinking of you always.
Elizabeth and Alba Victoria
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Date: Mon, 20 Jul 1998
19:40:49 EDT
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From: Resa and Mark
Pace <Copperhd87@AOL.COM>
Subject: The pain of life-Coping thru
faith
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Dear all,
My Mitchell has only saggittal craniosynostosis,
he does not have Aperts.
However, I have certainly had my moments of guilt, denial and grief.
I found
great comfort in reading the book, "The Hiding Place" by Corrie ten
Boom. The
basic premise is that we are not of this world, and the suffering that
we
endure here is only temporary. God does not see our imperfections
or
difficulties because they will not matter in his dwelling place.
It takes a
very strong faith to come to grips with this, but it has really helped
me.
Another helpful book is "Uncle Tom's Cabin." It deals with the
same theme.
Maybe this is why Jesus said we need a childlike
faith. It is difficult
for an adult to accept God's complete love.
In"The Hiding Place," one of the characters actually
thanks God for the
fleas infesting her. The Nazi guards would not come close to
her because they
were afraid of her fleas. Can you imagine?
I have also found comfort in the Harvard neurology
web forum. There are
so many parents there whose children are so very sick. It helps
to keep me
from feeling too sorry for myself.
I hope this might help,
Resa
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Date: Mon, 20 Jul 1998
23:55:27 -0400
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From: foster <foster@ICONTECH.COM>
Subject: Various
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I haven't been able to read all of the E-Mails for a few days and I
am
thrilled to hear that Nicole has had her surgery and is doing well.
What a
releif that must be for you guys. Hopfully she will be home soon.
Lynn-I think everyone has felt the way you do and as everyone has said
you
are the best judge of what is right for you child. There are some things
that you have no control of such as surgeries and treatments,but you
have
taken care of Andrew for two+ years and he is just fine. You are the
best
thing for him and if you think it is getting to be to much than it
is. If
you think he needs any therapy ask your pt or op to show you what they
are
doing with him and you can work with him yourself. That can be a good
thing
for both of you.After all you probably already know how to do the things
that they do with him.And good luck in your new home.
Last week was not the greatest here, my one daughter had surgery on
Thursday
and my oldest daughter had an accident on Friday. She was not hurt
seriouly
but her car was totalled. Billy has a ear infection and is very cranky.But
that was last week and this is a better week.
Hope everyone is doing well after their surgeries and good luck to everyone
who is having surgery up comming.
I do have some other thing I would like to talk to you guys about but
that
can wait for an other day.
Karen(PA)
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Date: Tue, 21 Jul 1998
08:50:09 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Teeter tonsils
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Good morning everyone -
Just a quick note to let you all know Teeter's surgery went well.
During surgery, the doctor decided not to remove her adenoids due to
the
difficulty of the procedure and the small benefit likely from their
removal due to their position. We spent one night in the hospital.
She's been a little cranky, and not eating and drinking very well, and
was running a low grade fever. Last night we called the ENT and
he
recommended we take her to the pediatric emergency room as a precaution
to have her checked. While we were getting ready to go she perked
up
and began to be like her old self. On the way to the hospital
Teeter
announced that she would like a hot dog from a particular local fast
food place, so we reversed direction and took her there. We never
did
make it to the hospital!!!
Don
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Date: Tue, 21 Jul 1998
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From: foster <foster@ICONTECH.COM>
Subject: Teeters Tonsils
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Great to hear than Teeter is doing so well and hope she gets better
everyday. I'd settle for a hotdog instead of ER anyday.
Karen(PA)
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Date: Tue, 21 Jul 1998
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From: Rich Hartley
<rhartley@DZIS.COM>
Subject: First Op. Andrew born 4/30/98
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Hi Family,
Firstly, thank you to all for a great welcome to the listserv.
We have
learned a lot
in 2 1/2 months. Andrew Hartley born 4/30/98 will be having his
first
operation on
Monday 7/27/98 at CHOP in Philly. Dr. Peter Sun is our neurosurgeon.
Jack
&
Raquel just had Nicole done. Andrew will only have the Cranial vault
remodeling
done. What can we expect post op. Any suggestions. How long would
he be in
the ICU.? Has anyone noticed a personality change in infants after
this
procedure.
How long before the swelling goes down.?
Thank you in anticipation.
Regards,
Rich & Karen Hartley
East Norriton,PA
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Date: Tue, 21 Jul 1998
13:15:45 -0400
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Teeter tonsils
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Great to hear Teeter's surgery went well and she is feeling better.
I
agree with Karen, I would prefer a hot dog to the hospital also!
In fact,
I just prefer a hot dog (Been dieting for about two weeks and hot dogs
are
definitely not on the list!)
Hope everyone else is doing well. We had a little scare with Carmen's
head. She got a bit of infection right on top. We saw the
plastic surgeon
yesterday and it is only on the surface; he said the incision is completely
closed. That was great news, but we are back to greasy head (Bactroban
ointment three times a day!) Oh well, just glad it wasn't serious!
Robin Hill
----------
> From: Don Sears <dsears@SCRS.STATE.SC.US>
> To: APERT@LISTSERV.AOL.COM
> Subject: Teeter tonsils
> Date: Tuesday, July 21, 1998 8:50 AM
>
> Good morning everyone -
>
> Just a quick note to let you all know Teeter's surgery went well.
> During surgery, the doctor decided not to remove her adenoids due
to the
> difficulty of the procedure and the small benefit likely from their
> removal due to their position. We spent one night in the hospital.
>
> She's been a little cranky, and not eating and drinking very well,
and
> was running a low grade fever. Last night we called the ENT
and he
> recommended we take her to the pediatric emergency room as a precaution
> to have her checked. While we were getting ready to go she
perked up
> and began to be like her old self. On the way to the hospital
Teeter
> announced that she would like a hot dog from a particular local fast
> food place, so we reversed direction and took her there. We
never did
> make it to the hospital!!!
>
> Don
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Date: Wed, 22 Jul 1998
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From: Elizabeth de
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Subject: Re: Teeter tonsils
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Don, we are so happy to know that Teeter did so well on her surgery.
Just to let you know I will definitely prefer hot dogs (with lots of
mustard on!!) instead of ER. I do agree with Teeter.
Elizabeth
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: Teeter tonsils
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> and began to be like her old self. On the way to the hospital
Teeter
> announced that she would like a hot dog from a particular local fast
> food place, so we reversed direction and took her there. We
never did
> make it to the hospital!!!
Sounds like Teeter is recovering quite well!
I'm so glad to hear
that.
Judy
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Date: Tue, 21 Jul 1998
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From: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Good going to Teeter: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
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Good going Cat and Don and
congratulations to Teeter. I
loved your story about not
getting to the ER.
All the best,
Scott
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Date: Tue, 21 Jul 1998
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: First Op. Andrew born 4/30/98
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Hello Rich and Karen! Carmen Rae just had the surgery Andrew is
about to
have (June 12th). She only spent one night in ICU. When
she came out of
surgery, she had a large turben-like head dressing. This bandage
really
made her head look LARGE! Trust me, it is not that large underneath.
We
were amazed at how good the incision and stitches looked after only
one
day. The doctor took the bandage off the day after surgery.
One thing we
were not expecting were tubes that were sewn in on each side of her
head.
These tubes were for drainage, but weren't too bad. The doctor
also took
those out after about a day (maybe two days). We were told to
expect alot
of swelling. Our doctor said their eyes are usually swollen completely
shut for 3 - 4 days. However, Carmen's eyes were only swollen
shut for
about 14 hours. All of the swelling was gone in about a week
and a half to
two weeks. The only personality change we saw in Carmen was immediately
after surgery for about a day or so. Of course, she was on morpheine
(spelling?) and therefore, she slept alot and was kinda sluggish.
She
regained her appetite almost immediately and was back to her old self
in a
couple of days. She was smiling and playing after about two days
and by
the time we went home (4 nights in hospital) we couldn't even tell
she had
surgery (other than the stitches).
I was real amazed at how quickly Carmen bounced back. Within about
a week,
she was our same ole baby again! Her sleeping scheduled got a
little
messed up, but after two nights in her own bed she was back to sleeping
11-12 hours AT NIGHT! I know, I have an angel baby!!!!!!
Good luck and keep us updated. We will keep Andrew (and his parents)
in
our thoughts and prayers. I know this surgery seems VERY BIG
and VERY
SCARY, but everything will be fine! Trust me, I really didn't
think I
could get through this, but I did!
Is your neuro-surgeon doing this surgery alone or with a plastic surgeon?
If I can answer anything else, please let me know. You can email
me
privately at CARMENRAE@PRODIGY.NET or on the listserver.
Robin Hill
Newnan, Georgia
P.S. One thing that helped me know what to expect were the pictures
of
Jacob Bailey on Teeter's page. There may be some of the other
kiddos too,
however, I remember looking at his and it really helped.
----------
> From: Rich Hartley <rhartley@DZIS.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: First Op. Andrew born 4/30/98
> Date: Tuesday, July 21, 1998 1:01 PM
>
> Hi Family,
> Firstly, thank you to all for a great welcome to the listserv.
We have
> learned a lot
> in 2 1/2 months. Andrew Hartley born 4/30/98 will be having
his first
> operation on
> Monday 7/27/98 at CHOP in Philly. Dr. Peter Sun is our neurosurgeon.
Jack
> &
> Raquel just had Nicole done. Andrew will only have the Cranial vault
> remodeling
> done. What can we expect post op. Any suggestions. How long
would he be
in
> the ICU.? Has anyone noticed a personality change in infants after
this
> procedure.
> How long before the swelling goes down.?
>
> Thank you in anticipation.
>
> Regards,
> Rich & Karen Hartley
> East Norriton,PA
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Date: Tue, 21 Jul 1998
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From: foster <foster@ICONTECH.COM>
Subject: Delta Society
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I was watching a show a few weeks ago about the Delta Society hosted
by Mary
Tyler Moore. It was on HBO and it was about the 1997 National Awards
winners
and it was called Three Cats from Miami. It was about animals who recieved
awards for their working with People with disabilities and people in
hospitals and nursing homes all over the world. I did not see the the
beginning and from what I did see there was no kids with Aperts
but what I
did see was amazing. I had never heard of the Delta Society before
and was
very surprised by some of the stories they told. I was wondering
if anyone
else saw the program and what they thought.I am aware of how some animals
can make a great difference in the lives of challanged people. What
I never
thought of was the different kinds of animals that are making a difference.
There was a horse who received an award for working with a little boy
with
very poor muscle tone who was born with Downs Syndrome. I was so touched
by
how happy this horse named Frosty made this little boy. I looked up
the
Delta Society on the internet and read as much as I could about it.
I am in
no way sugesting anyone joining or donate to this organization but
I wanted
to know if anyone else has thought of using animals as part of your
childs
therapy? I know many have dogs and other animals for their children.
We have
a beautiful dog which is wonderful with our kids but Billy seems to
shy away
from her because when she barks she seems to hurt his ears. We also
have a
hamster which I do not like because I am not to fond of rats and mice
but he
loves it. When we let the hamster roll around in his ball Billy laughs
uncontrolabley. Anyway, I am thinking about checking in to the horse
riding
thing for him, it just seems like it might be a good thing for him.
Anyone
have any thoughts on this?
Karen(PA)
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Date: Tue, 21 Jul 1998
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From: foster <foster@ICONTECH.COM>
Subject: First op
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Good luck to the Hartleys on Monday. This is scary time just before
this
surgery and I want you to know that we have all been worried before
this one
and we were sooo releived when it was over. Billy was almost one when
he had
this surgery and he did very well. He was in ICU for two nights and
came
home after five days. He did look kind of like a prize fighter for
a little
while but his eyes never were completley shut and this was good. He
had one
really bad night the first night he was home and that was because his
pain
medicine needed to be adjusted. He did not have any bandages at all,
but his
head was swollen alot. There was a difference in his personality after
a
while and really was able to do more things afterwards that he did
not do
before. I understand that is the case in most kids. I am talking about
rolling around on the floor to get where he wanted to go and responing
to a
smile and smiling back for the first time. As time went on more and
more
things started happening. All were good. Anyway try to relax
as much as
possible before Monday and remember you are doing the best thing for
Andrew
and leave it in the Lords hands and before you know it this will be
behind
him. One thing that was helpful during this long surgery was that they
whould call out to the waiting room and let us know that things were
going
well and that helped . Because they had a hard time getting a line
into
Billy his surgery was and hour and a half late getting started we knew
this
and we didn't worry why he was in there so much longer than he
was suppose
to. Our prayers as always are with you and your family and your presious
son
Andrew.
Karen(PA)