Good morning everyone. Just a quick note to update. We are
heading into
Kindergarten on Aug 31. EvaJessie is doing so well with her baloon,
she's
pretty tolerant of it and comfortable talking about it one on one with
other
kids. And of course they all ask. It's hard not to notice
it since it
sticks out frmo the side of her cheek -- it is about the size of a
double
duplo block sticking out there. I keep telling her what a beautiful
tissue
flap she's growing and how healthy and pink it looks. When the
sun is
behind her, the light comes thru the skin and the balloon -- it's
translucent and it sort of lights up if you see what I mean.
This morning she asked if Doctor Doug would let her keep the balloon
after
it comes out! Both the kids want to see what it looks like.
I'll have to
ask him if he will save it for them.
We have a tentative surgery date of September 16. It is just a
target date
now and will be confirmed on the 10th when we go out to vancouver for
a
check up. But I feel confident that we'll be ready by then.
In the meantime we need to deal with the start of Kindergarten and some
orientation for her classmates. I'll be seeing her teacher next
week to
organize an approach to this. I am thinking I may also do a quick
inservice
for the rest of the teachers at our school so that they can answer
questions
from their students if it comes up. I just want everyone to know
how brave
she is and what a wonderous thing is happening so that they can support
her
and not be afraid to play with her because of this. Am I over-reacting?
What does everyone think?
Thanks for being there for us. This is a lonely road sometimes.
Pat and EvaJessie in Calgary
ps pictures will be on her web page when this is all done.
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
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Date: Sat, 22 Aug 1998
18:58:49 EDT
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From: Nodrmat26@AOL.COM
Subject: Re: Two questions..
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Stacy~
Just wanted to let you know that Zoey has the choanial atresia too.
Zoey was
trached at three weeks, and we were told that the trach would come
out
sometime after her midface advancement surgery (ies).
Christina
San Antonio
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Date: Sun, 23 Aug 1998
17:52:51 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Derek's Surgery
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Dear Karen, Billy and Family
>Things are not going to well right now for our Billy.
Hang in there. Thinking of you.
Ann
NZ
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Date: Sun, 23 Aug 1998
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: VARIOUS
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Welcome back Brenda. Glad to hear it was only the computer that crashed.
The problem you are having with Jonathan is one of the reasons why I have no arguments with bilateral ops. With both hands in bandages they can't get themselves out of them (usually!)
Regards
Ann
NZ
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Date: Sun, 23 Aug 1998
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: tissue expansion
reply
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Hi Pat
What a brave lass EvaJessie is heading off to Kindergarten with her balloon. I hope it all goes well for you.
>Am I over-reacting?
>What does everyone think?
You just go and do what is right for you. You'll probably find the kindergarten age children accept her pretty quickly, it is the older ones that will push the issue. And I would think it important that the teachers do know what it is all about.
Take care
Hugs
Ann
NZ
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Date: Sun, 23 Aug 1998
05:07:54 EDT
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From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: Thoughts on hand casts/bandages
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Good "pearls" Don,
My helpful tip for summer hand dressings is this...we had the big
splints/dressings in a hot Pittsburgh summer. After the first few days
they
got really pretty odiferous so I got some Coban (that's the 3M product-there
are other names) It's like a stretch, papery Ace wrap. It sticks to
itself and
made a nice cover- the color (denim blue) showed less dirt and it helped
keep
the scents inside for the final week of the dressing- and can be changed
as
needed.
Marianne
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Date: Sun, 23 Aug 1998
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From: Jenngram@AOL.COM
Subject: Re: Thoughts on hand casts/bandages
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Ahhh, Coban has worked wonders for us as well...and it has an element
of water
resistance to it...for the little ones who still behave like little
puppies
and feel the need to always "lick thier wounds"...ie...keep trying
to put te
surgical hand in their mouths!!!!!
Hope Billy is recovering well...
And many congrats to EvaJessie for starting kindergarten, and what a
wonderful
attitude she has.....oh, don't they grow up sooo fast!!!!!!
Jenn(Tampa/St. Pete)
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Date: Sun, 23 Aug 1998
12:27:55 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Hand Surgery
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Hi everyone,
I hope everyone is having a good weekend. We here are a bit lucky
cause
it looks like hurricane Bonnie is going to miss us.
Glad to hear that EvaJessie is getting ready for school and is ready
for
it. I hope that all the sick kiddos get well real soon and are
able to
resume with all the scheduled surgeries.
Well Nicole will start with her hand surgeries in November it will
either be the 5th or the 12th of November. The doctor will release
the
pinkie and the index fingers on both hands for the first surgery, so
she
hopes I guess it all depends on how long the surgery takes etc.
Nicole
has both middle fingers fused at the tip and both middle fingers have
one bone only (no knuckles). The pinkies have two bones she has
the
very tip knuckle that she bends. Both her index fingers have
three
bones(looks like two knuckles) so the doctor said she might be
able to
bend those, but she won't know until she goes in at the time of surgery
and after. Right now the flexibility of them is unknown, there
are
separate bones but that doesn't mean that they will be flexible.
But we
will sure keep our fingers crossed and at least we have a bit of hope.
Anyway it's good to read all of the e-mails on hands because it will
start getting us ready.
I want to thank all of you for your advise and opinions on my two
questions. Bottom line Nicki is a spoiled little brat but she
is our
spoiled little brat whom we love very very much and I guess I could
deal
with her being that way a little longer.
Dori, just to let you know Baptist Hospital does have a section that
is
for children which we were not aware of. So I guess it should
your
doctors and your decision on which hospital to go to. My opinion
is you
should go with your doctors hospital of choice only because he might
have better connections and stuff in that particular hospital.
Baptist
is a very good hospital so I am sure the children's section is just
as
good.
Well, enough for now.....talk to you all soon...
Raquel Miller....
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From: Yonstein@AOL.COM
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Glad to hear from the Seiberts again and that Jonathan is doing well.
Way to go Eva Jessie. You have a tremendous outlook and so do
you Pat. Hope
your first days in Kindergarten go smoothly for you. I think
speaking to the
teachers is a good idea. This way they will know how to speak
with the other
kids about the tissue expanders. They will know what it is all
about.
Hope everyone else is doing well and Billy is feeling better soon.
Emily is on an antibiotic for a double ear infection and has a pretty
bad
cold. The medicine has already made an improvement, though. Now
I have to get
rid of the cold she gave to me.
Have a good night.
Janine Krebs
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Date: Mon, 24 Aug 1998
19:35:19 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Maths
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Greetings
We have just returned from our Parent-Teacher meeting for Amy and would like some feedback from families with children around 7years and upwards.
Up until this term Amy has done well with her maths, but it is now evident she has struck a block in her learning - the question is, is it due to the syndrome? Others have mentioned their children with Apert having trouble with maths concepts and I would like a few specifics please.
The best example for Amy is probably the two times table. When Amy is checked for her 2 or 3 times table either in sequence or out of sequence there is no problem. However, if something comes up that requires a 2x response she hasn't a clue. We were playing a game with dice the other day and she had to multiple 2x5 and she had no idea, even when I gave her some clues. Same thing happened the next day with something else we were doing.
She also cannot make the link between the use of words and the use of signs. She knows the signs for plus, times, division, etc, but if it is put into words in different ways she cannot make the connection.
She doesn't appear to understand about "sets of" either when we discuss multiplication.
Her teacher says all this is not normal for children of her age and ability. We pushed him a little to get him to say that, so don't anyone get upset that he should say such a thing. I have quite a bit to do with him because I work at the school and he knows I like straight answers.
It is possible that there is a deficiency in her corpus collosum and there may be some association here. Anybody know? Lark, are you still with us?
Hope to hear from you soon.
Best wishes
Ann
NZ
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Date: Mon, 24 Aug 1998
22:53:02 +1000
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From: Carol or Jason
<carolh@HOTKEY.NET.AU>
Subject: Fw:
UPCOMING HAND SURGERY
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Hi Everyone,
Well I have just found out today that Ashleigh has an unconfirmed op
date of
Nov 17th for her hand surgery to release the middle and ring finger.
Its
been 2 years since her 1st op to her hands and we have made numerous
calls
trying to get a date for her op as I am due to have my baby about Oct
24th
and wanted the surgery to be over and done with before the baby was
due but
wouldn't you know it TYPICAL!!!its just after the birth. Im so
mad because
this is what I wanted to avoid so I could devote my time to Ashleigh
in
hospital and not have to worry too much with feeding etc. OH
Well!!!
Ive been reading alot about this tissue expansion is this the way the
do all
the hand ops or is it only some, because as far as I know here at the
Childrens Hosp (Australia) Ash will be getting the normal sking graft
and I
did meet a younger child with Aperts a year ago who I think was getting
this
tissue expansion done by the way the mother described the procedure
to me
but they had Private Health Insurance and we thought that that this
may be
the reason why.
Next question - Is it best to get both hands done at once or one at
a time
as I couldn't make up my mind when asked as to have it over and done
with in
one go or give her the freedom of movement with the other hand????
Well not feeling the best at the moment worrying about how I'm going
to do
this juggling but I suppose that when you have to cope with all these
things
happening a once it just happens (I hope).
Thanks for listening
Carol (9 weeks to go and feeling like I'm going to blow up)
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Date: Mon, 24 Aug 1998
08:40:56 -0500
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From: Tim Graves <twg@HIWAAY.NET>
Subject: new email address
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As of Monday Aug. 24, 1998, our new email address will be]
tcgraves@bellsouth.net
Thanks
Tima nd Carol Graves
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From: jamerman@UTI.COM
Subject: Re: math
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Ann,
I am glad that you brought this subject up.
I am also very concerned for Nick on our end. It seems that
math at one
time was his strong point but he had a difficult time retaining what
he has
learned. About a month ago I came across a hydrocephalus listserv,
which
sparked my interest since Nick is also hydro. It appears that the majority
of Hydro ' victims' arealso learning disabled to many degrees
and have a
problem with short term memory. I don't recall if Amy is also hydro
and if
this would even apply to you.
My own observations of Nick is he can learn and remember things that
interest him. So I don't know if it's a combo of the hydro and apert's
or
if alot of it is just lack of motivation.
I did have Nick tested a few years back for ADD and the results were
positive. During the school year he is on ritalin which does help to
keep
him "focused". But with Nick repitition (sp) is a must.
Hopefully we will get more responses about this which will help us both.
In the meantime good luck and hang in there.
Judy
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Date: Mon, 24 Aug 1998
21:59:25 -0500
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From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: VARIOUS
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Brenda, it is wonderful to know Jonathan is doing great.
Elizabeth
>
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: math
In-Reply-To: <199808241415.JAA13161@matrix.uti.com>
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> I did have Nick tested a few years back for ADD and the results were
> positive. During the school year he is on ritalin which does help
to keep
> him "focused". But with Nick repitition (sp) is a must.
Interesting that you bring this up. When I read the description
of
Amy's problem, I thought how much it sounded like my ADHD oldest son.
He really struggled with math during his early years. He finally
"got it" on times tables while learning Algebra. The good news
--
all that repetition paid off and he'll be taking one college course
along with his HS courses this year.
We did have him tested for specific learning disabilities
--
something I'd definitely recommend for any child struggling in
school. Regardless of the underlying condition causing the learning
disability, there are strategies for coping that can be taught.
Judy
Judy Gibson
jgibson2@erols.com
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Date: Mon, 24 Aug 1998
16:22:21 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: FW: Re Tims Page
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Hi everyone! Here's the address for Tim's page until i get it
as a link
from Teeter's Page....
> -----Original Message-----
> From: landmcox@webtv.net [SMTP:landmcox@webtv.net]
> Sent: Sunday, August 23, 1998 9:30 AM
> To: Don Sears
> Subject: Re Tims Page
>
> Hi, his page is 98 percent done so please
> drop by and see what has been done.Please let every body know in
the
> Aperts list so they can see also.Ask them to please sign the Guest
> Book.Please let me know what you think of his page.Ok here is his
> addy.
> http://members.tripod.com/~bears_4
> Thanks for letting us link to Teeters Page.
>
Mary
>
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<img src=3D
"http://members.tripod.com/~webtv40/beatles.gif">
<img src=3D
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<br>
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<bgsound src=3D
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<marquee behavior=3Dalternate>LETS=A0BE=A0FRIENDS</marquee>
<br> =20
<br>
<a
href=3D"http://www.wunderground.com/US/NV/Reno.html">
<img src=3D
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Date: Mon, 24 Aug 1998
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From: CoH1862@AOL.COM
Subject: Re: Maths
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Ann,
Our daughter Mallory has a terrible time in
math. Sometimes things click
and sometimes they don't. At times she seems to know it and then it
all goes
away. We have had her tutored in math every year since first grade.
We are now
in fifth. I wish I had an answer, no one else does. On the funny side,
she
failed phonics every year, but has a reading level of tenth grade??
Diane
Tn.
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Date: Tue, 25 Aug 1998
16:31:50 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Fw:
UPCOMING HAND SURGERY
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Hi Carol
Wow, 9 weeks to go! Exciiiting!! Hope it all goes well for you.
>wouldn't you know it TYPICAL!!!its just after the birth. Im so
mad because
>this is what I wanted to avoid so I could devote my time to Ashleigh
in
>hospital and not have to worry too much with feeding etc. OH
Well!!!
Hey it beats being in hospital having the baby while Ashleigh is in having her hands done. Also you won't have The Bulge getting in the way when you want to cuddle Ashleigh, or lean over her bed and attend to her. And the new babe won't know whether you are in hospital or at home. And its a good excuse to use disposable nappies. And you will be able to sit down with your feet up instead of racing around doing housework and washing. And the nurses will probably make sure you get a comfortable bed. And you're not going to get to sleep through the night anyway with a new babe or with Ashleigh in bandages so you might as well do them together. And, and, and, there was something else but it has zipped out of my mind.
>Next question - Is it best to get both hands done at once or one at
a time
>as I couldn't make up my mind when asked as to have it over and done
with in
>one go or give her the freedom of movement with the other hand????
I'm an advocate for both hands at once. Amy onehanded isn't much better than Amy with mittens on both hands, she can't pick the bandage off one hand when the other is not wrapped, and it is one less op and one less time of frustration. Because a onehanded kid is going to be frustrated and you are going to have to do heaps for her anyway. I go for both if both need doing - which they always have. I even had the first done when her legs were still in plaster! If she was grounded she might as well be really grounded!
>Well not feeling the best at the moment worrying about how I'm going
to do
>this juggling but I suppose that when you have to cope with all these
things
>happening a once it just happens (I hope).
It does. That's life.
Every best wish for both hospitalisations.
Hugs
Ann
NZ
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Date: Tue, 25 Aug 1998
16:05:26 +1000
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From: ANGELIQUE PEZZIMENTI
<ANGELIQ@BIGPOND.COM>
Subject: aperts
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hello my name is angelique and my daughter was born with aperts.She
is =
nearly 2. i am just new to the list so if you want to know more just
=
drop me a line.
angelique
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</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>hello my name is angelique
and my =
daughter was=20
born with aperts.She is nearly 2. i am just new to the list so if you
=
want to=20
know more just drop me a line.</FONT></DIV>
<DIV><FONT color=3D#000000=20
size=3D2> &nbs=
p;  =
; =20
angelique</FONT></DIV></BODY></HTML>
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Date: Tue, 25 Aug 1998
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From: Patbrat718@AOL.COM
Subject: Maths
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Hi Ann!
Same out here on math with Jasmyn. I purchased the "Hooked on
Math" program
for her about a year and a half ago. The concepts did seem to
make things
easier for her, but if we walked away from the 'repetative' daily listenening
for more than three days, almost all was lost. I have been so
frustrated
trying to get her school to help find a solution. Until this
last year,
Jasmyn has been about 2 ahead on her reading, but now looks like she
is
leveling out on that. Still looking myself, but wouldn't mind
if you came up
with an answer :)
Patti
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Date: Tue, 25 Aug 1998
19:31:06 +1000
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From: ANGELIQUE PEZZIMENTI
<ANGELIQ@BIGPOND.COM>
Subject: aperts
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0008_01BDD05E.E7D2D860"
This is a multi-part message in MIME format.
------=_NextPart_000_0008_01BDD05E.E7D2D860
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
hello howard and anne thank you for your reply.Toni is my daughters
name =
and she was born 15september 1996 Iwas heart broken when she was born.I
=
had 2 scans before i had her and nothing was detected so you can =
understand when she was born how i felt.I did not even want to hold
her =
but now she is the love of my life and i would not be with out =
her.Shehad her craniofacial at 6 months and now she is stoll in the
=
proces of getting her hands done.Her next operation is in november.I
=
thank god for his strenth to get me through the days when i see
my =
daughter in pain without him i could not cope.anyway looking forward
to =
hearing from you.
angelique
------=_NextPart_000_0008_01BDD05E.E7D2D860
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>hello howard and anne thank
you for =
your=20
reply.Toni is my daughters name and she was born 15september 1996 Iwas
=
heart=20
broken when she was born.I had 2 scans before i had her and nothing
was =
detected=20
so you can understand when she was born how i felt.I did not even want
=
to hold=20
her but now she is the love of my life and i would not be with out
=
her.Shehad=20
her craniofacial at 6 months and now she is stoll in the proces of
=
getting her=20
hands done.Her next operation is in november.I thank god
for his =
strenth=20
to get me through the days when i see my daughter in pain without him
i =
could=20
not cope.anyway looking forward to hearing from you.</FONT></DIV>
<DIV><FONT color=3D#000000=20
size=3D2> &nbs=
p;  =
; =
=20
angelique</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_0008_01BDD05E.E7D2D860--
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Date: Tue, 25 Aug 1998
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From: ETolson643@AOL.COM
Subject: Re: Math
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Tim is also much stronger in the reading area than math. He loves
to read and
looks for the newspaper before anyone else in the house. We are
now working
on improving his math skills in the money area so that he will be able
to
manage his money independently. He worked this summer and opened
his own bank
account and kept some money for spending. This was a good way
for him to see
how fast the money goes!!! I am surprised that he isn't better
in math
because his spatial skills are so good; he good beat anyone at a geography
game. He can find his way anywhere. He knows his way around
the Boston T
better than his mother!!! (Sometimes I ask him which way to go!)
In my
classroom I usually see the kids with good spatial skills as having
good math
skills...so I am a little perplexed. There must be another factor.
It's an
interesting question, for sure.
Beth Tolson
Boston
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Date: Tue, 25 Aug 1998
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As someone who is sooooo bad at math, that carries a calculator at all
times I
can relate to what all these poor guys and girls are going through.
I have
always been bad at math and always will.......my first checking account
almost
sent my poor dad an early grave, as I ended up thousands of dollars
overdrawn. I was tutored for the beginning of my school, to the end
(and
literally cried when I was told I would have to take 2 semesters of
college
algebra)...and lets not EVEN start on geometry.....Fortunately I have
yet to
worry about this with Jordan, but am enjoying empathising with ya'lls
kids..and seieng what our future may hold again...Obviously I am not
going to
be the one to tutor Jordan!!!!
Jenn(Tampa/St. Pete)
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From: jgibson2@EROLS.COM
Subject: Re: Math
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My mom taught remedial math for many years. She's the one who
finally got my oldest over the hump with his times tables (while he
was learning Algebra -- she told me not to hold him back because he
didn't know them). Mom told me to make (or buy) a chart
with the
times tables on it like this only bigger:
X 1 2 3
4 5
1 1 2
3 4 5
2 2 4
6 8 10
3 3 6
9 12 15
4 4 8
12 16 20
She said do NOT let him use a calculator until
he gets better at
times tables, but let him use the chart for his math lessons (I was
homeschooling him at the time, so no problem with teachers).
He only
needed the darn thing for a few weeks. I was amazed -- all the
repetition we'd done for YEARS didn't get the times tables into
his
head and this worked. You could make similar charts with addition
facts if that's where you are.
I think that things like Hooked on Math
probably would do the
trick for auditory learners. Rob apparently is more of a visual
learner.
Judy
Judy Gibson
jgibson2@erols.com
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Date: Wed, 26 Aug 1998
15:19:51 -0400
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From: Alice Lynch <goddess@CAPITAL.NET>
Subject: Re: Math
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Dear Judy:
Great chart! Colin is also having trouble with math. He's
stuck on the
double digit addition and substraction. He gets the single digit
addition
and substraction. Add the next digit and he's lost.
It took me quite awhile to figure out your chart but when I finally
did it
was like a light bulb going on. I'm not very good in math either
so when
the bulb went on I kinda understood what my son must be going through
and I
want the light bulb to go on for him.
What would an addition and subtraction chart look like? Would
you be kind
enough to reply with one like the multiplication chart? To keep
going on
the multiplication chart, do I do 6 6 12 18 24 etc. only on top of
each
other not side by side?
Thanks again for your great tip. I'll try it out on Colin and
let you know
how well it works.
Alice
----------
> From: jgibson2@erols.com
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Math
> Date: Tuesday, August 25, 1998 4:50 AM
>
> My mom taught remedial math for many years. She's the one who
> finally got my oldest over the hump with his times tables (while
he
> was learning Algebra -- she told me not to hold him back because
he
> didn't know them). Mom told me to make (or buy) a chart
with the
> times tables on it like this only bigger:
>
> X 1 2
3 4 5
> 1 1 2
3 4 5
> 2 2 4
6 8 10
> 3 3 6
9 12 15
> 4 4 8
12 16 20
>
> She said do NOT let him use a calculator
until he gets better at
> times tables, but let him use the chart for his math lessons (I was
> homeschooling him at the time, so no problem with teachers).
He only
> needed the darn thing for a few weeks. I was amazed -- all
the
> repetition we'd done for YEARS didn't get the times tables
into his
> head and this worked. You could make similar charts with addition
> facts if that's where you are.
>
> I think that things like Hooked
on Math probably would do the
> trick for auditory learners. Rob apparently is more of a visual
> learner.
>
> Judy
> Judy Gibson
>
> jgibson2@erols.com
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From: jgibson2@EROLS.COM
Subject: Re: Math
In-Reply-To: <199808251922.PAA28643@Delta.capital.net>
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> What would an addition and subtraction chart look like? Would
you be kind
> enough to reply with one like the multiplication chart?
No problem:
+ 1 2 3
4 5
1 2 3
4 5 6
2 3 4
5 6 7
3 4 5
6 7 8
4 5 6
7 8 9
5 6 7
8 9 10
Just expand that as much as you need to to get the addition
facts
in place. Double digit addition past about 20 would take up a
lot of
space, though.
> To keep going on
> the multiplication chart, do I do 6 6 12 18 24 etc. only on top of
each
> other not side by side?
You've got the idea. I drew a square and subdivided
it so there
are lines between the numbers -- it's much easier to read that way.
I think you can buy charts like that in teacher stores, but it only
takes a few minutes to make one.
Judy
Judy Gibson
jgibson2@erols.com
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Date: Tue, 25 Aug 1998
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From: HAROLD E TYRE
<HETSRT@PRODIGY.NET>
Subject: CARMEN RAE IN HOSPITAL
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Hello everyone, this is Carmen Rae's Grandmother Sherry in Augusta Ga.
Just wanted to let you know that Carmen is a sick little girl and is
in
Egleston Children's Hospital in Atlanta. She began vomiting and
passing
out at home yesterday afternoon. The symptoms seemed to be Shunt
malfunction, however after xrays and a cat scan today the doctors say
the
shunt seems to be working fine. She kept 6 ozs of formula down
for a while
and then began vomiting again this afternoon. When I talked to
Robin at
4pm they were trying again to put in an IV but can't find a vein.
They are
waiting on other test results and the Nuerosurgeon to see her.
Please
include her in your thoughts and prayers. I will update her condition
after I talk to Robin or Mike later this evening. Thanks for
your support.
Carmen Rae's GMA
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Date: Tue, 25 Aug 1998
17:22:07 EDT
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From: Copperhd87@AOL.COM
Subject: Re: Math-my two cents
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Dear all,
Math is a subject we have had a lot of experience
with around our house.
My husband and I are both accountants, but our 13 year old daughter
had a
terrible time with it in the early elementary grades. She was
finally
diagnosed as having a learning disability called dysgraphia.
It's similar to
dyslexia, but it involves trouble with the brain communicating what
to write
to the hand. She was a wonderful mirror writer and can still
do it without
any problem. She's also left-handed.
Anyway, what I wanted to say is this: DO NOT under any circumstances
let
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Date: Tue, 25 Aug 1998
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From: Copperhd87@AOL.COM
Subject: Re: Math--my two cents #2
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Thank you Mitchell for sending my unfinished mail.
Anyway, do not let teachers blow off your concern. My opinion
is that one
reason why people choose to teach elementary school is that it is a
good way
to avoid any higher level math courses. From K-2nd grade, the
teachers would
not take us seriously. Finally, when her ITBS scores showed significant
difference between math and other subjects, they conceeded that there
might be
a problem. It's a long story, but just don't let teachers ignore
the math
problem.
I think most teachers do blow off girls more than boys in math, too.
I highly
recommend the book "Failing at Fairness--How America's Schools Cheat
Girls."
It is very important that they don't fall behind, and math is important
if you
choose almost any career except elementary education.
Thank goodness we got a great 3rd grade teacher. Though Rebecca
still has
difficulty with math, she has worked very hard to overcome her disability
and
to overcome inadequate teaching in K-2nd. Our hundreds of dollars
on tutors
helped too.
This is one of my pet peeves. I hope I didn't bore you too much.
Resa
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Date: Wed, 24 Jun 1998
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Comments: RFC822 error: <W> Incorrect or
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: VARIOUS
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Janine,
I hope Emily recovers from her ear infection and you and her get over
the
cold soon.
-Andrea
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Date: Thu, 25 Jun 1998
20:07:47 -0400
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Math
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Hi everyone,
Sorry I'm a little late on the subject.
Math has been a problem for me to. Especially the higher level
math such
as algebra. I took an intermediate math course, which isn't college
level,
twice. The second time I got tutoring and passed with a D.
I also had
problems multiplying 7 and 8s when I was younger.. like 8X7, 8X8.
Math
like accounting and balancing a checkbook is a lot easier. I
just hope the
statistics course I'm taking this semster won't give me problems.
-Andrea
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Date: Thu, 25 Jun 1998
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From: Andrea Gartner
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Subject: Re: CARMEN RAE IN HOSPITAL
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Carman Rae is in my thoughts and prayers. I hope she gets over this soon.
-Andrea
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Date: Thu, 25 Jun 1998
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From: Andrea Gartner
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Subject: Re: aperts
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Hi Angelique,
My name is Andrea. Im a 20 yr old with Apert Syndrome. Im
glad you joined
the list. This group is like my second family. Where are
you from? I'm
from Cape Coral, Florida.
-Andrea
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Date: Tue, 25 Aug 1998
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: VARIOUS
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Thanks everyone for your well wishes for EvaJessie's Kindy start up.
I
spoke to the principal today and he agreed that I could talk to the
teachers. I will do that this Friday.
Just wanted to also say get well soon to Billy (Karen how about an update?)
and Emily and Carmen Rae. The passing out episodes sound pretty
scary.
Hope they get that figured out right away.
I guess everyone else must be busy with school starting. Hope
everyone else
is well. Has anyone heard about Derek's surgery?
Andrea, by the way. I had math problems too in high school, and
it really
shook me up. When I took my stats course in university, I really
had to
work for it but I made it through. Good luck to you.
I recall earlier on a kids list that I sub to the parents talking about
the
importance of rote learning -- straight memorization for things like
the
times tables. Do they still teach them that way? I guess I'll
find out as
my son Thomas is heading to grade three this year.
TAke good care everyone.
Pat and EvaJessie in Calgary
ps injection number 11 today, three weeks and counting
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
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Date: Tue, 25 Aug 1998
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Welcome to Anelique and Toni. My name is Janine Krebs and I have
a daughter
Emily who is one with Apert Syndrome. We live in New York.
Where are you
from? I am sure you will find this group to be informative and
supportive.
Everyone here is wonderful.
To Carmen Rae and family, we are sending you our prayers and wishes
for a
speedy recovery. Hopefully they will be able to quickly figure
out what the
problem is.
Emily is doing much better since on the antibiotic and I am coming along
with
my cold as well.
Hope everyone else is healthy and well and that nobody is affected by
Hurricane Bonnie over the next couple of days.
Best wishes,
Janine
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Date: Tue, 25 Aug 1998
22:34:58 -0400
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From: Steve & Stacy
<sshb@EROLS.COM>
Subject: Re: Fw:
UPCOMING HAND SURGERY
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Carol, Brooke had both done at once which worked well for her.
She couldn't get
bandages off with either hand and I felt it made sence doing them each
the
same. This way she could learn to use her fingers evenly. Each
side would be
the same.
Stacy
Carol or Jason wrote:
> Next question - Is it best to get both hands done at once or one at
a time
> as I couldn't make up my mind when asked as to have it over and done
with in
> one go or give her the freedom of movement with the other hand????
>
> Well not feeling the best at the moment worrying about how I'm going
to do
> this juggling but I suppose that when you have to cope with all these
things
> happening a once it just happens (I hope).
>
> Thanks for listening
> Carol (9 weeks to go and feeling like I'm going to blow up)
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Date: Tue, 25 Aug 1998
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Math
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Alice Lynch wrote:
> Dear Judy:
>
> Great chart! Colin is also having trouble with math.
He's stuck on
> the
> double digit addition and substraction. He gets the single
digit
> addition
> and substraction. Add the next digit and he's lost.
>
> It took me quite awhile to figure out your chart but when I finally
> did it
> was like a light bulb going on. I'm not very good in math either
so
> when
> the bulb went on I kinda understood what my son must be going through
> and I
> want the light bulb to go on for him.
>
> What would an addition and subtraction chart look like? Would
you be
> kind
> enough to reply with one like the multiplication chart? To
keep going
> on
> the multiplication chart, do I do 6 6 12 18 24 etc. only on top of
> each
> other not side by side?
>
> Thanks again for your great tip. I'll try it out on Colin and
let you
> know
> how well it works.
>
> Alice
>
> ----------
> > From: jgibson2@erols.com
> > To: APERT@LISTSERV.AOL.COM
> > Subject: Re: Math
> > Date: Tuesday, August 25, 1998 4:50 AM
> >
> > My mom taught remedial math for many years. She's the one
who
> > finally got my oldest over the hump with his times tables (while
he
> > was learning Algebra -- she told me not to hold him back because
he
> > didn't know them). Mom told me to make (or buy) a chart
with the
> > times tables on it like this only bigger:
> >
> > X 1 2
3 4 5
> > 1 1 2
3 4 5
> > 2 2 4
6 8 10
> > 3 3 6
9 12 15
> > 4 4 8
12 16 20
> >
> > She said do NOT let him use a calculator
until he gets better
> at
> > times tables, but let him use the chart for his math lessons (I
was
> > homeschooling him at the time, so no problem with teachers).
He
> only
> > needed the darn thing for a few weeks. I was amazed -- all
the
> > repetition we'd done for YEARS didn't get the times tables
into his
>
> > head and this worked. You could make similar charts with
addition
> > facts if that's where you are.
> >
> > I think that things like Hooked
on Math probably would do the
> > trick for auditory learners. Rob apparently is more of a
visual
> > learner.
> >
> > Judy
> > Judy Gibson
> >
> > jgibson2@erols.com
Hi from Kelly,
I just wanted to let you all know that I have had A LOT of trouble
with
Algebra. I have repeated the highschool three times. I have tried
getting a tutor and nothing has worked. I didn't really have trouble
multiplying but I do use a calculator, just like practically everyone
else. I only know my factors up to 12. The rest I have to find out
by
using a calculator.
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From: Steve & Stacy
<sshb@EROLS.COM>
Subject: Re: CARMEN RAE IN HOSPITAL
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Our thoughts and prayers are hoping for a speedy recovery.
Steve and Stacy
HAROLD E TYRE wrote:
> Hello everyone, this is Carmen Rae's Grandmother Sherry in Augusta
Ga.
> Just wanted to let you know that Carmen is a sick little girl and
is in
> Egleston Children's Hospital in Atlanta. She began vomiting
and passing
> out at home yesterday afternoon. The symptoms seemed to be
Shunt
> malfunction, however after xrays and a cat scan today the doctors
say the
> shunt seems to be working fine. She kept 6 ozs of formula down
for a while
> and then began vomiting again this afternoon. When I talked
to Robin at
> 4pm they were trying again to put in an IV but can't find a vein.
They are
> waiting on other test results and the Nuerosurgeon to see her.
Please
> include her in your thoughts and prayers. I will update her
condition
> after I talk to Robin or Mike later this evening. Thanks for
your support.
> Carmen Rae's GMA
=========================================================================
Date: Tue, 25 Aug 1998
22:59:51 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Welcome
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Welcome to Angelique and Toni,
We are Jack and Raquel Miller from Ft. Lauderdale Florida. Our
children
range from Michelle (14), Steven (10), Erica (4), and Nicole (10
months). Nicole was born on October 3, 1997 with Apert Syndrome.
Attached you will find a photo of us with Nicole 2 days post op of her
first cranial (July 16, 1998). I hope it goes through.
We just
purchased this scanner and are still trying to learn how it works.
Carmen Rae will be in our prayers.
Jack Miller
=========================================================================
Date: Wed, 26 Aug 1998
13:35:24 +1000
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From: ANGELIQUE PEZZIMENTI
<ANGELIQ@BIGPOND.COM>
Subject: APERTS
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HELLO EVERYONE AND THANK YOU FOR YOUR NICE WELCOME I LIVE IN VICTORIA
IN =
AUSTRALIA I THINK TONI IS THE LAST APERTS IN AUSTRALIA THERE WAS ONE
=
AFTER HER BUT SHE DIED AT BIRTH IF YOU WOULD LIKE TO KNOW ANYTHING
ELSE =
JUST ASK.
ANGELIQUE
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<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>HELLO EVERYONE AND THANK
YOU FOR =
YOUR NICE=20
WELCOME I LIVE IN VICTORIA IN AUSTRALIA I THINK TONI IS THE LAST APERTS
=
IN=20
AUSTRALIA THERE WAS ONE AFTER HER BUT SHE DIED AT BIRTH IF YOU WOULD
=
LIKE TO=20
KNOW ANYTHING ELSE JUST ASK.</FONT></DIV>
<DIV><FONT color=3D#000000=20
size=3D2> &nbs=
p;  =
; =20
ANGELIQUE</FONT></DIV></BODY></HTML>
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Date: Tue, 25 Aug 1998
22:49:55 -0500
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From: Tim and Carol
Graves <tcgraves@BELLSOUTH.NET>
Subject: school
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I was thinking that sometime in the past some parents on the
listserv said they were home schooling. If so, are you
still on here? I would love to hear about your decision to
do so and how it is working out.
Carol Graves
=========================================================================
Date: Wed, 26 Aug 1998
14:45:12 +1000
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From: Carol or Jason
<carolh@HOTKEY.NET.AU>
Subject: Re: aperts
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-----Original Message-----
From: ANGELIQUE PEZZIMENTI <ANGELIQ@BIGPOND.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, 25 August 1998 19:36
Subject: aperts
=20
=20
Hello Angelique
=20
My name is Carol and I'm from Australia your name
rings a bell I =
think I may have met you??? I am from Rye on the Peninsula??
My =
daughter Ashleigh is now 3 years old are you near Frankston?
Please let =
me know. My phone No is 59 852328 Catch you soon.
=20
Carol
=20
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<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3
=
HTML//EN">
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV> </DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px">
<DIV><FONT face=3DArial size=3D2><B>-----Original
=
Message-----</B><BR><B>From:=20
</B>ANGELIQUE PEZZIMENTI <<A=20
=
href=3D"mailto:ANGELIQ@BIGPOND.COM">ANGELIQ@BIGPOND.COM</A>><BR><B>To:=
=20
</B><A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20
<<A=20
=
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><BR>=
<B>Date:=20
</B>Tuesday, 25 August 1998 19:36<BR><B>Subject:
=
</B>aperts<BR></FONT></DIV>
<DIV><FONT face=3DArial size=3D2></FONT> </DIV>
<DIV><FONT face=3DArial size=3D2>Hello Angelique</FONT></DIV>
<DIV><FONT face=3DArial size=3D2></FONT> </DIV>
<DIV><FONT face=3DArial size=3D2>My name is
Carol and I'm from =
Australia your=20
name rings a bell I think I may have met
you??? I am from Rye =
on the=20
Peninsula?? My daughter Ashleigh is now
3 years old are you =
near=20
Frankston? Please let me know.
My phone No is 59 =
852328 =20
Catch you soon.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2></FONT> </DIV>
<DIV><FONT face=3DArial size=3D2>Carol<BR></DIV></FONT>
<DIV> </DIV></BLOCKQUOTE></BODY></HTML>
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Date: Wed, 26 Aug 1998
14:52:15 +1000
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From: Carol or Jason
<carolh@HOTKEY.NET.AU>
Subject: Re: APERTS
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-----Original Message-----
From: ANGELIQUE PEZZIMENTI <ANGELIQ@BIGPOND.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, 26 August 1998 13:38
Subject: APERTS
=20
=20
Hi its me again Carol that is just read your last
e-mail and it =
answered my question. How are things going with you?? I
just found out =
that Ashleigh is having her next hand op in November as well when will
=
you be there?? Ours is on the 17th of November but I am pregnant
and am =
due to have a baby on the 24th of October so I am not really pleased
=
with this as its been 2 years since the last hand op and Ive been trying
=
to get this one done before my baby is due but typical its just not
=
going to happen.
You will find this Listserv more information that
you will ever get =
from doc's here and it will be first hand straight from the parents.
I =
started to feel lonley here as I had been the only Aussie on this list
=
up to about 2 to 3 weeks ago when Chris who has a girl called Emma
from =
Victoria logged on and I was just soooooo!!! excited.
No-one here seems to keep in contact and by airing
out my laundry on =
this listserv its been an absolute Godsend. Would
love to catch up =
with you to see how things are going.
Carol
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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><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3
=
HTML//EN">
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV> </DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px">
<DIV><FONT face=3DArial size=3D2><B>-----Original
=
Message-----</B><BR><B>From:=20
</B>ANGELIQUE PEZZIMENTI <<A=20
=
href=3D"mailto:ANGELIQ@BIGPOND.COM">ANGELIQ@BIGPOND.COM</A>><BR><B>To:=
=20
</B><A =
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>=20
<<A=20
=
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><BR>=
<B>Date:=20
</B>Wednesday, 26 August 1998 13:38<BR><B>Subject:=20
</B>APERTS<BR><BR></DIV>Hi its me again
Carol that is just read your =
last=20
e-mail and it answered my question. How
are things going with=20
you?? I just found out that Ashleigh is
having her next hand =
op in=20
November as well when will you be there??
Ours is on the 17th =
of=20
November but I am pregnant and am due to have a
baby on the 24th of =
October=20
so I am not really pleased with this as its been
2 years since the =
last hand=20
op and Ive been trying to get this one done before
my baby is due =
but=20
typical its just not going to happen.</FONT></BLOCKQUOTE>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px"><FONT=20
face=3DArial size=3D2>You will find this Listserv
more information =
that you will=20
ever get from doc's here and it will be first hand
straight from the =
parents. I started to feel lonley here
as I had been the only =
Aussie=20
on this list up to about 2 to 3 weeks ago when Chris
who has a girl =
called=20
Emma from Victoria logged on and I was just soooooo!!!=20
excited.</FONT></BLOCKQUOTE>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px"><FONT=20
color=3D#000000 size=3D2>No-one here seems to keep
in contact and by =
airing out=20
my laundry on this listserv its been an absolute
=
Godsend. =20
Would love to catch up with you to see how things
are =
going.</FONT></BLOCKQUOTE>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px"><FONT=20
color=3D#000000 size=3D2>Carol</FONT></BLOCKQUOTE></BODY></HTML>
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Date: Wed, 26 Aug 1998
00:53:07 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: school
In-Reply-To: <35E385E2.D2AB682F@bellsouth.net>
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> I was thinking that sometime in the past some parents on the
> listserv said they were home schooling. If so, are you
> still on here? I would love to hear about your decision to
> do so and how it is working out.
> Carol Graves
Carol,
None of my boys have Apert (I'm a NICU nurse, that's
why I'm
here). I have homeschooled 2 of them -- the little guy is only
3.
The oldest has ADHD, the middle one has dyslexia. It's been a
challenge at times. I started because my oldest just wasn't making
it in our parish school and I knew the local middle school wouldn't
be any better for him (too many neighbors having problems).
We had several options, but he wanted me to
take him out of
school -- so I did. Two years later, he went to high school and
has
been doing pretty well ever since. He's a senior in high school
this
year and will be attending the local community college part time.
My middle son (now 15) had just finished
4th grade, and due to
his dyslexia, wasn't reading well at all. He's still no speed
reader, but does perform at grade level in reading skills and above
in math and science. He opted not to go back to school, so we'll
be
learning Trigonometry this fall. I may spend a lot of time on
the
phone with my retired math-teacher mother. I wish she wasn't
300
miles away, so she could just teach him math. I often use books
on
tape to introduce him to new authors. Once he knows a book is
worth
the effort, he'll usually read it on his own.
There are organizations for families homeschooling
special needs
kids, but many "mainstream" them. One of the families in my support
group has a child with Down syndrome. Another has 2 severely
learning disabled teenagers. Both families chose to homeschool
because the school system's expectations for their children were so
low.
The other option, of course, is to fight for
appropriate
services within the system. I've done it both ways & homeschooling
took less effort for me -- at least until high school. Experiences
will vary, of course. I've been thrilled with the local high
school.
They're not perfect, but I haven't had to fight, just ask, when we've
needed help with Rob there.
Judy Gibson
jgibson2@erols.com
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Date: Wed, 26 Aug 1998
16:04:03 +1000
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From: ANGELIQUE PEZZIMENTI
<ANGELIQ@BIGPOND.COM>
Subject: APERTS
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HI CAROL MY GOD IT IS SO GOOD TO HEAR FROM YOU I HAVE BEEN DOING REALLY
=
WELL AND TONI IS JUST BEAUTIFUL I WOULD LOVE TO SEE YOU AND ASHLEY
AGAIN =
SO WE HAVE TO ARRANGE A TIME I AM GLAD YOUR HAVING ANOTHER BABY
I AM A =
BIT SCARED TO GET PREGNANT ANYWAY TONI IS GOING IN TO SEE KEITH
IN =
SEPTEMBER SO I WILL KNOW WHEN SHE IS GOING IN BUT SHE IS NOT GOING
INTO =
THE ROYAL CHILDREN SHE GOES TO EPWORTH NOW THEY ARE GREAT THERE PLEASE
=
KEEP IN TOUCH AND WE WILL SEE EACH OTHER SOON.
ANGELIQUE
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<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>HI CAROL MY GOD IT IS SO
GOOD TO =
HEAR FROM YOU I=20
HAVE BEEN DOING REALLY WELL AND TONI IS JUST BEAUTIFUL I WOULD LOVE
TO =
SEE YOU=20
AND ASHLEY AGAIN SO WE HAVE TO ARRANGE A TIME I AM GLAD YOUR
=
HAVING=20
ANOTHER BABY I AM A BIT SCARED TO GET PREGNANT ANYWAY TONI
IS =
GOING IN TO=20
SEE KEITH IN SEPTEMBER SO I WILL KNOW WHEN SHE IS GOING IN BUT SHE
IS =
NOT GOING=20
INTO THE ROYAL CHILDREN SHE GOES TO EPWORTH NOW THEY ARE GREAT THERE
=
PLEASE KEEP=20
IN TOUCH AND WE WILL SEE EACH OTHER SOON.</FONT></DIV>
<DIV><FONT color=3D#000000=20
size=3D2> &nbs=
p;  =
; =20
ANGELIQUE</FONT></DIV></BODY></HTML>
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Date: Wed, 26 Aug 1998
22:28:16 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Maths
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Greetings "Family"
Thanks to all who answered my query, I have found all your replies really interesting reading - it is obvious this is not an uncommon problem. Wouldn't it be helpful if someone could tell us whether this is due to the syndrome, teaching techniques or just plain lack of understanding.
I thought Lark Jarvis would have something helpful to share (and I love her quote at the end of this) so I sent the query over to her and she has replied as follows:
Return-Path: lark@involved.com
X-Sender: lark@mail.involved.com
Date: Tue, 25 Aug 1998 22:34:42 -0700
To: Howard & Ann <howrdnan@ihug.co.nz>
From: lark@involved.com (Lark Jarvis)
Subject: Re: Math
Hi Ann,
(feel free to forward if you want)
Hope everyone on the Aperts list is doing well! :~) I think you're
definitely onto something when you suspect the corpus callosum--Because
one of the textbooks for an workshop I took last spring (from HANDLE
Institute in Seattle-- http://www.handle.org ) addresses your question
exactly, if in a round-a-bout way, I think. The book is
called _Smart
Moves: Why Learning is Not All in Your Head_, by Carla Hannaford,
PhD.
(Great Ocean Publishers, Arlington, VA, USA)
Hannaford says: (following a paragraph that talks about the importance
of
the cross-pattern crawl's influence on inter-hemispheric function)
"When learners, and teachers, take advantage of this (cross pattern
crawl)
simple way of increasing the brain's efficiency, learning is bound
to be
more engaging and successful. I've been delighted to see math,
for
example, being taught in new ways that utilize both hemispheres of
the
brain. Time tables were deadly for me--endless hours of memorization.
Teachers are now setting up cooperative learning groups in their classrooms
that are responsible for coming up with a rap that they then teach
to the
class. The numbers from the logic side and the rhythm and image
from the
gestalt side provide a winning combination for ease of learning."
And later on, she says:
"I've been in classrooms where math is being taught only from story
problems. Students **access images** when they solve story problems
and
work from a three-dimensional, real-life perspective. Sometimes
the
students themselves devise the story problems, making them emotionally
relevant as well as accessing deeper imaginative thought . . ."
So it sounds like the "accessing images for real life" function is what's
missing in Amy's case, even though memorization is working fine . .
.
HANDLE Institute's founder, Judith Bluestone, PhD, was herself born
without
a language center of her brain (!). Somehow (using various body-centered
neurological exercises that later became the HANDLE method), her brain
managed to compensate and/or develop other structures (She is now more
verbally adept than most lawyers I know! :~o ) So I don't know, but
I'm
guessing that it might not be an impossibility for Amy to use
a similar
strategy to compensate for or bypass a missing or incomplete structure?
I'm guessing that if you emailed Judith (her email is on the HANDLE
webpage--I think it's Judith@handle.org), she'd have some ideas, and
might
be able to tell you realistically what sort of strategies she'd use.
HANDLE
is newly established and eager to get its ideas out, so they're not
stingy
with advice to non-clients. Their program is literally the only
one in the
world of its kind, looking at developmental issues much differently
and
more holistically than anyone else out there.
ALong those same lines--I also just learned that there is an ancient
yogic
breathing technique called Pranayama breathing that's recently been
shown
(on PET scans, etc) to stimulate both sides of the brain to work together.
(It's really simple--just involves inhaling and exhaling deeply, closing
off alternate nostrils--yogis use it as part of meditation.)
I wonder if
that might be the sort of (at first glance, slightly "out-there") thing
that Judith's treatment strategy might include? In other words,
I wonder
if that sort of thing could work to stimulate neural pathways that
aren't
there (yet). In any case, Judith would be the one to ask!
Good luck, and let me know what she says if you decide to email her--Hope
that helps give you more ideas,
Lark
*******************************************************
"The Earth is degenerating these days. Bribery and corruption
abound.
Children no longer mind their parents, every man wants to write a book,
and
it is evident that the end of the world is fast approaching."
--Assyrian stone tablet, c. 2800 BC
lark@involved.com
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Date: Wed, 26 Aug 1998
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From: Jenngram@AOL.COM
Subject: Re: Carmen Rae
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We will be saying a few prayers for Carmen Rae...hoping she is diagnosed
and
treated soon
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Date: Wed, 26 Aug 1998
23:55:19 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Math Charts
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--=====================_904200542==_
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For those who are interested and have computers that can handle a word.doc file, the multiplication, subtraction and adddition charts as recommended by Judy are attached.
Have fun.
Ann
NZ
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Date: Wed, 26 Aug 1998
14:45:47 EDT
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From: Firefli007@AOL.COM
Subject: Re: CARMEN RAE IN HOSPITAL
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our thoughts and prayers are with you for carmen rae
Jenny in Georgia
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Date: Wed, 26 Aug 1998
14:24:30 -0700
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safe haven for Apert Syndrome
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From: Thomas Troudt
<ttroudt@SPRYNET.COM>
Subject: Derek's successful surgery!!!!!
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Hello to all,
Derek had his craniofacial surgery on Thurs. the
20. We were home by
Sunday!!! He now has a wonderfully shaped head and the
lumps and bumps are
gone. The surgeons used the new dissolveable plates and no metal
was used.
How amazing new technology is. Derek is roaring to go and if
he didn't have
to wear a helmet, you wouldn't be able to tell that he had anything
done to
him a week ago. No swelling, no pain, no nothing. Yipee!
Thankyou everyone
for your kind responses and your prayers. Love, the Troudts
in Greeley
Colorado
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Date: Wed, 26 Aug 1998
17:34:04 -0400
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Derek's successful surgery!!!!!
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So glad to hear this news. Been thinking about the little guy
who is going
to be a train. I just can't get that out of my head. Isn't
it marvelous
how these little characters bounce back after these big surgeries.
How long
does he have to wear the helmet?
Hope you can keep up to him now he is home.
Thanks so much for hte update.
Pat and EvaJessie in Calgary
just waiting for those golden autumn days in the Rockies!
>
email to: bluenose@telusplanet.net
IM: onlypeach
It's never too late to have a happy childhood. Tom Robbins (Still
Life With
Woodpecker)
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Date: Wed, 26 Aug 1998
21:19:45 EDT
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From: GSieb91515@AOL.COM
Subject: Re: CARMEN RAE IN HOSPITAL
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We are so sorry to hear that Carmen Rae is sick. We will keep
her in our
prayers and hope that she is on the road to recovery soon. Hang
in there Mike
and Robin.
Brenda
Houston
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Date: Wed, 26 Aug 1998
23:08:01 EDT
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From: Nodrmat26@AOL.COM
Subject: Re: Derek's successful surgery!!!!!
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Zoey's Mom, Christina here:
It's been a few days since I've checked my mail, so I'm a little behind.
I
hope Carmen Rae is doing better, she will be in my prayers. Congratulations
on Derek's successful surgery, I'm very happy to hear that.
Goodnight,
Christina
San Antonio
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Date: Wed, 26 Aug 1998
23:29:42 EDT
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From: "(Marianne Camous)"
<Camous@AOL.COM>
Subject: Re: CARMEN RAE IN HOSPITAL
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In a message dated 8/25/1998 7:48:01 PM Pacific Daylight Time, sshb@EROLS.COM
writes:
<< he symptoms seemed to be Shunt
> malfunction, however after xrays and a cat scan today the doctors
say the
> shunt seems to be working fine. She kept 6 ozs of formula
down for a while
> and then began vomiting again this afternoon. When I
talked to Robin at
> 4pm they were trying again to put in an IV but can't find a
vein. They are
> waiting on other test results and the Nuerosurgeon to see her.
>>
This gives me chills. Evan had similar symptoms for weeks last year
with
negative scans etc. Be sure they TAP THE SHUNT for a culture. Sure
sounds like
a shunt infection which has not gotten to the point of occluding
it. These
can go on in an indolent manner for weeks-months but the kids just
kind of
dwindle!! Evan vomited (usually on me) like clockwork between 8:30
and 9:00 PM
every evening for soooo long. I was so frustrated, I was getting "consults"
by
email from a friend who worked for another neurosurgeon across town....When
they finally tapped the shunt, it was growing resistant staph. Hang
in there-
you are in our prayers. I used to work at Emory and graduated from
the
Physician Assistant program there so i have lots of faith in Eggleston!!
Marianne, Evan Milburn''s mom
San Carlos, CA
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Date: Thu, 27 Aug 1998
00:28:36 EDT
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From: Thornq@AOL.COM
Subject: Re: Two questions..
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Raquel,
I can only give you a suggestion on the waking in the middle of the night.
Andrew used to wake up in the middle of the night, and drink a whole
bottle or
sometimes half and then fall back to sleep. I was actually changing
diapers
in the middle of the night because he was drinking up to about 16-20
ozs of
whatever I grabbed first from the fridge at night. You are lucky
in the
aspect that it is not the whole bottle. What is in the bottle?
It should be
water, but I can't talk because mine weren't. They were 2ozs
of juice and the
rest water.
Andrew stopped that when I decided that it was time to stop it.
They are
using the bottle and pacifier as a security blanket. Believe
it or not, but I
just let Andrew cry it out for a couple of nights. I comforted
him and sort
of replaced Mommy for the bottle. It really only took about 3
nights, and
Andrew was much older. Unfortunately, that is what will ultimately
need to be
done, because I do not believe there is any other way. But you
must be
strong, Andrew cried for up to an hour one night kicking and screaming
like I
was killing him.
Good luck, and you must remember, you do what works for your family.
I still
snuggle Andrew to sleep at night.
Lynn
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Date: Thu, 27 Aug 1998
00:30:12 EDT
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From: Thornq@AOL.COM
Subject: Re: Two questions..#1
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Resa,
I wholeheartedly agree. I have to admit, that there have been
times where my
husband and I bring into our bed. He actually used to sleep in
our bed until
we moved into our new house, and twice since we've been here, he has
made it
into our bed in the middle of the night.
Lynn
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Date: Thu, 27 Aug 1998
01:06:24 EDT
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From: Thornq@AOL.COM
Subject: Seeking someone!
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Hello to all,
I forget to mention that I have not heard from Lisa McGahan (spelling)
for
quite sometime. So, Lisa, if you are reading this, please e-mail
me
personally at Thornq@aol.com. I am really interested in seeing
how you are
doing. I saw Dr. Upton the other day and I remember that I had
not heard from
you. Please e-mail me.
Thanks!
Lynn
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Date: Thu, 27 Aug 1998
01:03:41 EDT
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From: Thornq@AOL.COM
Subject: Hello Friends!!!
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Hello to all,
It's me, Lynn Thornquist! Sorry I have not been around lately,
but things
have been really hectic here in Massachusetts. We have finally
purchased our
house and moved in a couple of weeks ago. I am still trying to
unpack and get
settled, but at least Andrew finally has his own room and is actually
sleeping
in it.
I feel really bad about not giving my input on some things, but I am
back and
ready to give my advice when needed.
I welcome all the new families just coming to the listserv. It
is truly an
incredible family and I know you will enjoy it as much as I have.
Let me
introduce myself a little. My son, Andrew, is 2 years old and
has Apert. He
has had three cranial surgeries (post exterior release, frontal advancement,
and plate removal) and four hand surgeries. We now live in Hopedale,
MA.
Andrew is a vibrant, stubborn, wonderful little boy. I am truly
blessed.
Congratulations to all successful surgeries and good luck to any ones
coming
up.
I especially want to say that I am thinking of and praying for both
Joanne and
Carmen Rae. Both have had a tough road so far and will pull through.
Joanne,
please keep up posted.
Let me talk a little bit about Andrew for a moment. We just saw
Dr. Upton the
other day, and Andrew's ingrown toenails are back. We just might
have to go
in for another surgery on his feet, but he said it does look like we
have to
definately consider separating his toes in the next couple of years.
We were
already considering it, but Dr. Upton told me that if he did not think
we
should do the surgery, and we still want to go ahead, we will have
to find
another surgeon. So my decision is in his hands. We would
never dream of
going to another surgeon. We also had our Craniofacial Clinic
about a month
ago and they mentioned that Andrew will probably need a mid-face advancement
when he is about 12 years old, or something like that. All I
heard was mid-
face advancement, it was very shocking because they have been telling
us that
he would not need that. O