Lisa,
No, I don't think you are overreacting. I would have wanted someone
to tell me.
Definitely. Communication with and between health care providers
has been one of
our biggest problems since Kieran's birth.
When we called to cancel his cranial surgery, there was no one in the
office.
Greg left them a message saying that we wanted to cancel the surgery.
We fully
expected a phone call to find out why, etc..... We never heard
from the
neurosurgeon or anyone in his office. I find that very odd.
Sherry, Greg, Bailey, Laney & Kieran Roehl
Lisa Guyette wrote:
> Mechelle,
> We were told that Samantha would only need one pint of blood, but
ended up
> needing two. We had 3 pints donated, but I didn't have her
blood type and no
> one could give it to me in the time we had to donate it. So only
one was good
> for her. I guess with both of our stories, it's safe to say
if they say one,
> give three, to be safe. And if you don't have your child's
blood type have
> it checked before hand anyway you can.
>
> We wish Courtney a speeding recovery. What is a bilateral
cranial surgery?
>
> Can I ask everyone something? Am I overreacting?
I left a message for our
> plastic surgeon two weeks ago. We are set with the hand doctor
and just
> finished with the neurosurgeon. But I'm lost as to the cleft
palate and
> midface. And Samantha's neurosurgeon asked us Friday if we
were set in Sept
> for her brow advancement. First I heard of this. We were
told only that her
> forhead was normal and appeared large so we weren't have tohave a
forehead
> advancement. Now I'm hearing though she needs a brow advancement.
Well i
> went to to the plactic surgery department and asked to find out what
ournext
> step is. We were told we have to meet with the team and our
plastic surgeon.
> I asked his secretary if he ever said anything to her regarding our
case,
> because he didn't call us. She said no, but that we should
make a
> appointment with team.
>
> Samantha's case manager called today and said that the plastic surgeon
has
> turned our case completely over to the man who is doing her hands.
I'm a
> little upset by this. Am I naive to think that it might of
been nice if he
> could of called us and told us that he felt it would be best to not
have so
> many doctors as I heard he said.
>
> What bothers me I think is that we've had to consultations with this
man.
> Very nice and we grew to trust him with our daughter's whole case.
We also
> liked her hand surgeon, but we didn't look at him or interview him
as the man
> overseeing all of her sugeries.
>
> Sorry for so much writing, I guess my questions is do you guys think
the
> first Plastic surgeon should of called us and stated why he thinks
we should
> have another doctor?
>
> Love, Lisa Guyette
=========================================================================
Date: Thu, 8 Jul 1999
00:44:46 -0500
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: "Wendy S. Pak"
<Wendy_S._Pak@RIDLEY.ON.CA>
Subject: Database etc.
Comments: To: LISTSERV@listserv.aol.com
MIME-Version: 1.0
Content-type: text/plain; charset=ISO-8859-1
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Don and Listserver members,
This is what a wrote to someone with similar issues:
>As for the database, it would be part of Teeter's page and only for
those
>people affiliated with Teeter's Page or Aperts - nothing else.
It is
>just an expansion as to what is already on Teeter's page but with
a
>little more detail. For example a specific birthday like April
4, 1981
>rather than April/81 or in a specific state or country. That
way we can
>make not of birthdays and find all the people in a certain age group
for
>get togethers or something age specific. Now, you don't have
to include
>all details. If you are happy only submitting an e-mail address
versus
>an actual mailing address then that's fine. Just indicate what
state so
>that get togethers can be organized. If your information is
already on
>Teeter's page than it is no longer private! Everyone has access
to the
>internet. If your address is already there, then its no different
with
>this database. This database is not your generic mailing list
that gets
>sold to companies - it is Teeter's page specific! So far we
have been
>lucky that no weirdos on on the list server, but like you say you
never
>know. There could be someone that signs up and follows everyone's
life
>story that they seem to be putting on there and some time down the
road
>the wierdo will come knocking on the door. So yeah, I understand
your
>concern, but you have already put yourself in that situation.
Now Don, you mentioned that "The information that has been posted on
Teeter's Page and the personal pages is not easy for someone to get
because it is not in an orderly, database-style format. Each
individual
family has decided what to put or not put on their own web page."
That
may clarify what I wrote about in the above with regards to the info
already on Teeter's page. Sorry for not being properly educated
on that
matter if thats the case. I understand the privacy issue and
I am not
trying to invade it. I just want to be able to find the right
support for
my sister. It is hard filtering through the large number of people
on the
listserver or on Teeter's page without being able to do sorting within
a
database by state, country, age etc.
By the sounds of things, there is not much support out there for the
database, just like there has been little to no support for my sister.
My
letter about my sister on Teeter's page will tell you what Jeany and
I are
looking for.
As for Niagara Falls, I getting tired of people trashing it.
There are
plenty of things to do in the area. Toronto is just an hour away
and
Buffalo is only minutes away. There are plenty of beaches on
Lake Ontario
and Lake Erie (fresh water lakes might I add). Marineland is
a great
place for children. (Lying on Myrtle beach and getting cancer
isn't so
fun). Yes, many of you on the listserver have young children
and are
finding out how to bring up your children in today's society.
I applaud
your efforts of giving your child support and a normal upbringing.
But,
what about the ones that did not have the support your child has and
has
already grown up with Apert? My sister Jeany cannot write like
you or I
can in proper English structure. It's pretty good, but you would
not be
able to tell how old the person was writing the letter. She seeks
constant attention and friendship as she did not get much of that growing
up. Her schooling was spent with special needs kids - not mainstreamed
like most of your kids are. She gets very lonely which is why
she
constantly talks on the phone with people she does associate with.
She
had a pretty restrictive upbringing. I am only two years older
than her
and I couldn't or knew anything back then to do anything about it.
I
started taking care of her affairs when I was in high school which
was a
little too late. Jeany is now 28 with dreams of a relationship,
but her
social skills and manners need a lot of work. She seeks a lot
of
attention which affects how she socializes. Jeany and I were
one of the
early ones to be part of Teeter's page. I now only receive the
digested
version of the listserver because it has grown so big and the letters
are
not relevant to our situation. She even said this to me the other
night
on the phone. The get together in Niagara Falls does not have
to be
within the age groups specified. I only specified because of
the age of
apert people that were going to be there. Jeany would probably
socialize
more with the parents than the kids with aperts or with those her age
or
older with Aperts. She just wants some friends she can talk to.
That's
all! If she finds out that she can be successful in life and
have a
regular job and a family then it gives her hope to do better and not
act
like a teenager with crushes on people and wanting to teenage things.
Well, I have rambled enough. I don't mean to offend anyone either
- just
frustration setting in. I guess I should spend my summer holiday
on more
worthwhile ventures that Jeany might enjoy and that I might not get
frustrated or upset about. I have looked back at old e-mail messages
from
1995-96 when I first found Teeter's page. What a difference from
then
until now. I noticed a lot of the originals are no longer with
the list
server. I wonder why? Actually I know some reasons why,
and I will soon
be one of those leaving as my efforts seem to be going to waste.
I will
have to find other alternatives to finding support for my sister.
We will
still be getting together with the few families that have been open-minded
and are willing to help. I hope that some of you will open your
hearts a
little more and be one of the families willing to help also.
Wendy
=========================================================================
Date: Thu, 8 Jul 1999
00:43:26 EDT
Reply-To: Information exchange and Internet
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: Thankyou...
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Regarding fused fingers. My daughters three middle fingers are
completely
fused together and they will start separatedly them on August 5th.
I can't
say for sure that your neices fingers can be separated, but I would
get a
second oppinion.
Lisa Guyette, daughter Samantha 8 months with Aperts
=========================================================================
Date: Thu, 8 Jul 1999
00:59:08 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: Using Banked Blood
MIME-Version: 1.0
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When my daughter Samantha needed blood from the blood bank they told
me also
that it is sometimes safer than friends and family donated blood.
They gave
the same reason. We were also told though that they can
screen for
everything but Hep C. See was at a very high risk at that point
so we had no
choice. She had used her family donated blood at surgery.
I now will ask
her Ped to test her as often as necessary for Hep C.
The only thing I'm wondering is if a family member of ours donated blood
without telling us they had Hep C, and it didn't match my daughters,
wouldn't
it go to someone else. Wouldn't they thing then that it was blood
that was
donated without the pressure of a family member who was having sugery?
Love, Lisa Guyette
=========================================================================
Date: Thu, 8 Jul 1999
01:05:16 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
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THANKS for all the well wishes and prayers!
Brenda~
Courtney's IV's were taken out Saturday morning. Chelsea(age5)
is very
emotional when it comes to a needle. So, with Courtney barely
able to
look down and see her bib, we thought it would be theraputic for both
of
them to be together. Also, while on the phone, Chelsea seemed
depressed. She was shocked to see Courtney's bandages, then the
next
day her steristrips with the dried blood underneath. After that, she
just seemed to be sympathetic. She would have seen these when
Courtney
came home anyways. I am glad we made this discision!
Sumaya~
Courtney's middle finger and ring finger were fused at the end.
We were
told by 2 different doc's that they needed to amputate a finger.
The
third opinion we were promised 10 fingers, the dr dilivered them!
Good
Luck!
Lisa~
The way the dr explained a bi-canthel advancement to us, was that they
take the top part of the skull out, and move the bone around the eyes
forward. Plus, they put in asorbtion plates, that asorb when
growth
occurs. This medical terminology is all still new to me!!!!!!
Resa~
We don't have a doc band, her stitches are covered by steristrips.
We
only have to wear the helmet for protection purposes too! We
have been
scared that she is going to fall. I Guess paranoia is more of
the
problem! ha ha!
Thanks to everyone for being here for us!
Take Care!
Mechelle
=========================================================================
Date: Thu, 8 Jul 1999
01:07:02 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: Re: Using Banked Blood
In-Reply-To: Lisa Guyette <LAM1126@AOL.COM>'s message of Thu,
8 Jul 1999
00:59:08 EDT
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
Lisa~
I was told, if the patient doesn't use the blood donated for them,
it
gets thrown away.
Mechelle:)
=========================================================================
Date: Thu, 8 Jul 1999
02:04:23 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Re: THIS AND THAT
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Hi everyone,
After reading some responses to my post about not being happy that the
Plastic Surgery Surgeon who was overseeing our case, turned my daughters
whole case over to the surgeon who was doing her fingers, without telling
us
first, I just emailed the case manager who told us about this change.
I let
her know that I was uncomfortable after two consultations with this
man and
getting our trust, that I feel he should of called us and discussed
it with
us first. My husband and I liked the hand surgeon very much,
it's just that
we never knew or looked at him as a man who could be in charge.
If he has
done this alot and is highly recommended then we would be happy with
him.
Matter of fact we really know very little about the other surgeon as
well.
The reasoning was that it would be better to have one doctor do everything
than two. The first doctor doesn't do hands.
I would feel this way if I had walked into my gyno's office halfway
through
my pregnancy and was told she passed me on to someone else. And
she never
talked to me about it. This is more serious to me this is my
daughters life.
I'll let you know what kind of response I get.
Love, Lisa Guyette (daughter Samantha 8 months with Aperts)
=========================================================================
Date: Thu, 8 Jul 1999
08:23:38 +0200
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From: Sumaya Jhetam
<sumayaj@TRUSTCELL.CO.ZA>
Subject: Re: Change of E-mail Address.
MIME-Version: 1.0
Content-Type: text/plain
Hi,
My E-Mail address has been change to:
sumaya_j@yahoo.com
Thanks.
Sumaya.
=========================================================================
Date: Thu, 8 Jul 1999
20:04:31 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Ear infections
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>We've been warned that hearing loss is a constant threat with Apert's.
Kieran
>is only 3 months old and is already battling his third ear infection
- all have
>been in his right ear. He'll probably need tubes in the future
if this
>continues. From what I understand, it is a very common problem.
Sandra and Sherry, Amy managed to last until she was 7 before she got grommets (tubes) but I was a bit slow off the mark and she probably needed them earlier than that (fortunately no permanent hearing loss!). I understand it is a common problem with any craniofacial differences, and I know a lot of children without cf differences who have them as well. "Glue ear" can affect learning so dramatically that this operation is done fairly routinely where we are.
Good luck getting those infections under control.
Ann
NZ
=========================================================================
Date: Thu, 8 Jul 1999
20:04:37 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Not Myrtle Beach Reunion
but NZ
Mime-Version: 1.0
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At 09:40 PM 24/06/99 EDT, you wrote:
>Ann-
>
>Good to hear you had a reunion also. It sounds like Amy really
enjoyed it as
>I'm sure everyone did. Do you have any photos to share?
>
>Brenda
Hi Brenda
Photos still in my camera, and they all agreed it was okay to use them in our newsletter, but I had better check to see they all give permission for sharing further.
Thanks for the suggestion.
Regards
Ann
NZ
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Date: Thu, 8 Jul 1999
20:04:40 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Great news from the neurologist
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Great news Resa.
Ann
NZ
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Date: Thu, 8 Jul 1999
20:04:41 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Skin Lesions (was: Myrtle Beach
& A Nasty Pimple)
Mime-Version: 1.0
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> Bottom line, if you have a skin lesion, get it checked out.
Have
>someone look at your back and the backs of your legs for you -- those
>are the most common places to find melanomas.
Thanks for all that Judy, it is really important. I can say from personal experience it sure is scarey when you have one diagnosed and it costs heaps in follow-up checks before you feel relatively safe again!! I have now had a full body scan done where they photograph every slightly odd lesion and put it into the computer onto a body image, and have it done annually to identify any changes. Of course personal checks are still important, and such a scheme doesn't identify those that are lethal short-term.
Amy had a small mark on her scalp at birth. It is now a raised about 3inch inverted-L shaped lesion, a sebaceous naevus, which apparently (usually) doesn't become malignant until the 20s. BUT I don't think they expected it to be quite this active quite this young (8yrs) and she is having it removed some time in the next few months.
Is it part of the syndrome that such things are more active, as with acne?
Regards
Ann
NZ
=========================================================================
Date: Thu, 8 Jul 1999
20:05:06 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Unwanted Approaches
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Thanks Don
I am very wary about unwanted attention from others. I'm happy for Apert Listserver families to have our contact details, but we already get unsolicited mail and don't want any more.
I vote for "protection".
Regards
Ann
NZ
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Date: Thu, 8 Jul 1999
20:05:08 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Helmet advice
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The Autumn/Winter 1998 issue of "Headlines" from the UK Craniofacial Support Group contains a parent's experiences with their son wearing a helmet for Cranioplasty, to correct a sagittal synostosis "boat-shaped" deformity.
Not to be confused with wearing a helmet for protection.
Cheers
Ann
NZ
=========================================================================
Date: Thu, 8 Jul 1999
20:05:10 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Thankyou...
Mime-Version: 1.0
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>The doctors have said that the tips of the bones of her index, fore
&
>ringfinger are fused together and they therefore cannot separate them.
>Is this true?
Sumaya, These sound like Amy's hands and she now has five separate digits on each hand. Those three fingers on each hand shared a common finger nail. Is this like Maryam's?
Regards
Ann
NZ
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Date: Thu, 8 Jul 1999
09:54:52 +0200
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From: Sumaya Jhetam
<sumayaj@TRUSTCELL.CO.ZA>
Subject: Common nail.
MIME-Version: 1.0
Content-Type: text/plain
Hi,
Ann:
Yes, Maryam does share a common nail for those three fingers.
Sumaya.
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Date: Thu, 8 Jul 1999
20:47:19 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Myths and Legends
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As you have probably gathered after that influx of messages, I have just got back from holiday and am catching up with the mail!
Re issues to do with "Who owns the problem" and how we learn to cope with the challenges thrown our way (I think all families on this Listserver can identify with that), while on holiday I found a book I had mislaid "The Road Less Travelled" by M. Scott Peck, and on flicking through found a section on The Myth of Orestes, which I found very interesting. At the end he says:
...Orestes did not blame his family - his parents or his grandfather
- as he well might have. Nor did he blame the gods or 'fate'.
Instead he accepted his condition as one of his own making and undertook
the effort to heal it. It was a lengthy process, just as most therapy
tends to be lengthy. But as a result he was healed, and through this
healing process of his own effort, the very things that had once caused
him agony became the same things that brought him wisdom.
Now obviously none of what we are dealing with here is of our own making, but what struck me was the interpretation of this myth - I can equate the Furies with those early days of learning to deal with this new and unexpected life (living with A/S), and the Furies are transformed into the Eumenides, the loving spirits, the wisdom we have learned, or are learning as a result of our experience with our very special children.
Well, anyway, as a fan of myth and legend and what we can learn from them, I found it interesting.
Cheers
Ann
NZ
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Date: Thu, 8 Jul 1999
08:49:36 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Using Banked Blood
In-Reply-To: <1741-378431F6-4569@postoffice-101.iap.bryant.webtv.net>
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> I was told, if the patient doesn't use the blood donated for them,
it
> gets thrown away.
This probably varies by hospital/region. I'm pretty sure
that
self-donated blood would be tossed, but I'm not so sure about
blood
donated by others for a patient, even at my hospital. In the
NICU
it's not much of an issue, because directed donations nearly always
get used.
Judy
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Date: Thu, 8 Jul 1999
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Skin Lesions (was: Myrtle
Beach & A Nasty Pimple)
In-Reply-To: <199907080804.UAA17780@smtp1.ihug.co.nz>
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> short-term. Amy had a small mark on her scalp at birth. It is
now a raised about 3inch inverted-L
> shaped lesion, a sebaceous naevus, which apparently (usually) doesn't
become malignant until the 20s.
> BUT I don't think they expected it to be quite this active quite
this young (8yrs) and she is having
> it removed some time in the next few months.
My nephew has/had one of those. I know his mom was planning
to
have it removed before puberty, due to the risk of malignancy. She
lives in a different state and I hadn't thought about it until you
mentioned it. He's 12, so if it's not gone yet, it will be soon.
I
think I'll ask her, thanks for the reminder.
> Is it part of the syndrome that such things are more active, as with acne?
It would make sense, but I really don't know. Good
thing you're
getting rid of it before it has a chance to change.
Judy
=========================================================================
Date: Thu, 8 Jul 1999
07:00:25 -0700
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: Fortune cookie collection
for special needs children
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Last summer I had to go to Ohio with my mom to see my Grandma,(so that
meant
Dad was left home with 3 kids!) and before I left we had eaten at a
Chinese
resturant and I got : A handful of paitence is worth more then a bushful
of
brians. It is still taped to the Fridge! :)
Dawn
=========================================================================
Date: Thu, 8 Jul 1999
09:40:45 -0500
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From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: Kris surgery coming up!
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Hi guys,
Just a small note to ask for your prayers...Kris is scheduled to go
into
surgery tomorrow..Friday..7/9...Thank God she is doing so well so
far....she is not at all nervous!!! I'm praying that she
remains that
way!
She is real cool about what the drs. are going to do..(LeFort ) bring
the
upper jaw forrward....and some re-construction around her cheeks...
As usual, I am having a hard time with the insurance company...Isn't
this
the most stupid- thing you've ever heard...they will pay for her upper
jaw
to me aligned..but not her bottom....they will pay for her nose "job"
but
not her cheecks!!! ARghh!!!!!
Hello to everyone new! Welcome!!! My name is Ruth
Contreras..mother to
Kris, 16 year old with Apert...
By the way .. Friday was her Birthday...she had a blast!
Thank you for your prayers!!!
Talk to you later
Ruth
----------
> From: Apert Mail <apertmail@USWEST.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Fortune cookie collection for special needs children
> Date: Thursday, July 08, 1999 9:00 AM
>
> Last summer I had to go to Ohio with my mom to see my Grandma,(so
that
meant
> Dad was left home with 3 kids!) and before I left we had eaten at
a
Chinese
> resturant and I got : A handful of paitence is worth more then a
bushful
of
> brians. It is still taped to the Fridge! :)
> Dawn
=========================================================================
Date: Thu, 8 Jul 1999
13:44:54 EDT
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From: ETolson643@AOL.COM
Subject: Re: Using Banked Blood
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Tim has had direct donors for his recent surgeries. He also donated
his own
blood as well. My sister and I donated for Tim and were told
that any unused
blood is sent into the general blood bank. In the end, Tim needed
more units
than he had donated. He has used the blood bank several times.
Beth Tolson
=========================================================================
Date: Thu, 8 Jul 1999
11:52:53 -0700
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: Kris surgery coming up!
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Best wishes and a speedy recovery to Kris on her upcoming surgery.
We will pray that everything goes smoothly.
Where is she having the surgery done and who is operating?
Happy belated birthday and sweet sixteen!!!
Rose (Roxy's mom, age 10)
La Mirada, CA
=========================================================================
Date: Thu, 8 Jul 1999
16:20:00 -0700
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: Database etc.
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Dear Wendy,
Your love and concern for your sister Jeany
are quite evident and
noble. We cannot go back and change the past, nor is it easy
to change
one's mannerisms or behavior once adulthood is reached. Are the
expectations you listed realistic for Jeany (i.e., to have more friends,
hold a job, have a family, stop acting like a teenager)?
Would these give
her true "success in life?"
My opinion is that you might want to introduce
her to mainstream
friends ("real world") instead of searching for Apert people who are
of a
particular age or location.
Sure, we who have a loved-one with Aperts share a common bond.
But to me,
this is only a secondary characteristic, and it is my hope that others
will
look beyond and see the terrific person behind the label.
In short, a
friend can come in any shape or color.
Look into all possible alternatives and options
for support. Choose
the ones which will best meet your needs (and Jeany's). We are
all striving
together. Best wishes in your endeavors.
Rose
La Mirada, CA
=========================================================================
Date: Thu, 8 Jul 1999
21:10:17 EDT
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From: Patbrat718@AOL.COM
Subject: A New wonderful Doctor....
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I have just been to see Jasmyn's Surgeon that performed her midface
for
follow-up. This man is too good to keep from any of you.
He is responsible
for inventing the internal distracting device that Jasmyn had installed,
by
the way, she looks wonderful! His name is Dr. Steven R> Cohen
and is locaed
at Children's Hospital in San Diego, California. Lisa, this is
especially
for you and Samantha.....
His Address: FACES
8010 Frost Street
San Diego, CA 92123 (619) 292-1075
Believe me Lisa, it will be worth the drive. I believe you said
you were at
UCLA (?) now. I have been dealing with Doctors for ten eleven
years now.
Most of them good, some...(???) This an is WAY above the
norm. For the
rest of you, this man has a portfolio with cranio-facial deformities
that is
recognized through-out the world. He has made incredible progress
with
facial reconstruction. I am going to get some things (articles
and info)
scanned and send them to Don. In the meantime, look this man
up (and his
team of course :) )....you won't regret it!
Patti
=========================================================================
Date: Tue, 8 Jun 1999
17:40:43 +1000
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From: Carol Hamzsak
<carolh@HOTKEY.NET.AU>
Subject: Re: Ear infections
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Hi,
Regarding ear infections Im just wondering if anyone has had trouble
after your child has had the tubes put in. Ashleigh had her grommets
in last year when she just turned 3 and with her right ear we have had
nothing but trouble with this ear always weeping. I have had to cancel
3 hearing tests since April and she is due to go next week and guess what?????
Her right ear has just started again. We now have drops because I
told the doctor that she was on
antibiotics for too long.
Carol
>
=========================================================================
Date: Tue, 8 Jun 1999
18:04:28 +1000
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From: Carol Hamzsak
<carolh@HOTKEY.NET.AU>
Subject: "Soaps"
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This may be a silly question to some and is not Aperts related but I'm
just wondering if any of you watch "Days of out Lives" and or "Young
and
the Restless" over there. We are about 3 years behind you and
Im
wondering if I can get some info on future happenings. Is anyone
else a
mad soapy lover???
Carol
=========================================================================
Date: Fri, 9 Jul 1999
09:49:51 EDT
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From: NephiRose@AOL.COM
Subject: Re: Sleep Study
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As usual, I spend most of my time on the list serv lurking...but I had
to
report the results of Sarah V.'s surgery.
After spending a whole year agonizing whether I should use this doctor
here
in Utah for Sarah's fingers, I went ahead and scheduled the surgery
with him.
Three weeks after the cast came off....wow! Sarah now
has five fingers on
her left hand and it looks soooooo good! I am really relieved.
Because to
tell you the truth, cross country flying to various doctors did not
appeal to
me. We will be scheduling for Sarah's right hand next month after
we find
the results of the sleep study.
Here's a question for you all....Sarah's tonsils (according to the
pediatrician) is huge. The doctor figured that must be the reason
why she
has never slept through the night since she was a newborn and she is
now
almost 3 years old. Because I don't hear well, she sleeps with
me. (yeah,
it gets old ;0)
We took her to her ENT specialist and he agreed that they are big.
On the
scale of bigness 1 to 4, they are about a 2. He's not so anxious
to take
them out. (???)
Instead, he ordered a sleep study. Which is fine. But wouldn't
taking out
the tonsils have to be done anyway? Isn't it better to do it
now while she's
young than later??
I know she will need her mid face done, but her cranio doctor doesn't
want to
do it until she's at least 4 or 5, so if the sleep study states she
has a
narrow passage way (which she does) that is preventing her from breathing
well...we'll still have to wait a whole year for this to be fixed.
Any feed
back on this? I'm just a bit confused on this doctor's reluctance.
Anyone
else had experience with this?
Sorry the letter's so long...
Belinda Vicars
Utah
=========================================================================
Date: Fri, 9 Jul 1999
09:42:18 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Thursday's guests
MIME-Version: 1.0
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boundary="----=_NextPart_000_0035_01BEC9EF.561C1400"
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charset="iso-8859-1"
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Hi gang!
Just wanted to tell you again what a great 'family' you are! and
that I =
got to spend time with yet another family.
the Irvin's arrived at my house last night about 6:30. Amy, Alex, nine
=
with aperts and younger brother Eric. Within 10 seconds of their
=
arrival the boys were off playing as if this were something that they
=
did everyday! The boys played in the backyard and played in the
pool, I =
was just amazed at the instant interaction, they just got along soooo
=
well!
Alex is a very sweet boy and very proud of his 'new hand' (Five
=
fingers) Alex is also very lucky that he has a younger brother so close
=
in age. I know that although Nick has an older married sister
that he =
almost like an only child and gets very lonely sometimes.
Amy and I got to chat for quite some time last night and i truly enjoyed
=
her company. it is really funny that for every family i have
met that =
we are never like strangers when meeting. And that every family
brings =
something special into my life. It seems that although I may not hear
or =
see a particulr family for quite awhile that when we do talk or see
one =
another after a period of time, the bonding is still there somehow.
Amy, i just want you to know that the door is always open here and that
=
goes for any other family out there. And I hope you make it home
safe.=20
The boys did not want their fun to end so if the opportunity arises
=
again, I know that they will all be thrilled. They were even
swimming =
in the dark and you should have heard all the noise they were making,
=
that alone showed what fun they were having.
Amy is going to try to get into chat soon and when she does, she left
me =
with some pics and i will scan them into a photo album there for her.
=
Alex is so photogetic. ( Hope you can make this Sunday night
Amy) =
Remember 9:00, your time!
jamerman@uti.com
------=_NextPart_000_0035_01BEC9EF.561C1400
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charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>Hi gang!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Just wanted to tell you again
what a =
great 'family'=20
you are! and that I got to spend time with yet another=20
family.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>the Irvin's arrived at my house
last =
night about=20
6:30. Amy, Alex, nine with aperts and younger brother Eric.
Within =
10=20
seconds of their arrival the boys were off playing as if this were
=
something=20
that they did everyday! The boys played in the backyard and
played =
in the=20
pool, I was just amazed at the instant interaction, they just got along
=
soooo=20
well!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Alex is a very sweet boy and
very proud =
of his 'new=20
hand' (Five fingers) Alex is also very lucky that he has
a younger =
brother=20
so close in age. I know that although Nick has an older married
=
sister=20
that he almost like an only child and gets very lonely=20
sometimes.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Amy and I got to chat for quite
some =
time last=20
night and i truly enjoyed her company. it is really funny
that for =
every=20
family i have met that we are never like strangers when meeting.
=
And that=20
every family brings something special into my life. It seems that =
although I may=20
not hear or see a particulr family for quite awhile that when we do
talk =
or see=20
one another after a period of time, the bonding is still there=20
somehow.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Amy, i just want you to know
that the =
door is=20
always open here and that goes for any other family out there.
And =
I hope=20
you make it home safe. </FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>The boys did not want their
fun to end =
so if the=20
opportunity arises again, I know that they will all be thrilled.
=
They were=20
even swimming in the dark and you should have heard all the noise they
=
were=20
making, that alone showed what fun they were having.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Amy is going to try to get into
chat =
soon and when=20
she does, she left me with some pics and i will scan them
into a =
photo=20
album there for her. Alex is so photogetic. ( Hope
you can =
make this=20
Sunday night Amy) Remember 9:00, your time!</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
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=========================================================================
Date: Fri, 9 Jul 1999
09:44:13 -0500
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Kris
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Good luck on Kris's surgery today, I will be thinking of you and
=
praying that all goes well.
Judy
jamerman@uti.com
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charset="iso-8859-1"
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<HTML><HEAD>
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<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>Good luck on Kris's surgery
=
today, I will be=20
thinking of you and praying that all goes well.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
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Date: Fri, 9 Jul 1999
11:40:13 -0500
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From: "Wendy S. Pak"
<Wendy_S._Pak@RIDLEY.ON.CA>
Subject: Jeany
Comments: To: jchan7@PACBELL.NET
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Rose,
You are correct in saying that we must look beyond the label.
Jeany does
have a few "mainstream" friends through church and stuff. I think
because
her upbringing was restrictive, she has low self-esteem. I just
want her
to meet others with Aperts that do things like everyone else - have
a
family, have a job, etc. She knows these things are possible
now from the
people she has read about on the listserver. By hearing all the
postive
things Apert people can do, I hope it will give her motivation to mature
a
little and know that there is a happy future for her. A few years
back,
Jeany wanted to have her tubes tied because she did not want to have
Apert
kids suffer like she did. I think Jeany is now aware of the potential
for
people with Aperts - a very normal life with a few minor adjustments
in
how things may be done. Yes, mainstream friends are probably
the way to
go, but maybe she could talk to someone who went through the same type
of
growing up.
You are right about not being able to change one's mannerisms or habits
or
having difficulty in doing so. I am constantly trying to get
Jeany to not
do a few little things that would be not well looked upon or proper
by
people who do not know her. Maybe its just me being overprotecting.
Let
her learn from her mistakes, right? I think the expectations
I and
Jeany's social worker and herself have can be realistic, but Jeany
needs
to mature a bit more mentally. She is a very bright girl, smarter
than
she appears, but the essential life skills are not there yet.
I am
actually scared about her in relationships and stuff like that.
She has a
lot of jealousy and mean streaks in her when things do not go her way.
Jeany is growing, just in small baby steps. I know she will get
there
eventually. I have to remember that.
Thanks for your advice and words.
Wendy
>Date: Thu, 8 Jul 1999 16:20:00 -0700
>From: Joseph Chan <jchan7@PACBELL.NET>
>Subject: Re: Database etc.
>
>Dear Wendy,
> Your love and concern for your sister Jeany
are quite evident and
>noble. We cannot go back and change the past, nor is it easy
to change
>one's mannerisms or behavior once adulthood is reached. Are
the
>expectations you listed realistic for Jeany (i.e., to have more friends,
>hold a job, have a family, stop acting like a teenager)?
Would these
>give
>her true "success in life?"
> My opinion is that you might want to introduce
her to mainstream
>friends ("real world") instead of searching for Apert people who are
of a
>particular age or location.
>Sure, we who have a loved-one with Aperts share a common bond.
But to me,
>this is only a secondary characteristic, and it is my hope that others
>will
>look beyond and see the terrific person behind the label.
In short, a
>friend can come in any shape or color.
> Look into all possible alternatives and options
for support. Choose
>the ones which will best meet your needs (and Jeany's). We are
all
>striving
>together. Best wishes in your endeavors.
>
>Rose
>La Mirada, CA
=========================================================================
Date: Fri, 9 Jul 1999
12:07:52 -0500
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Fw: JAKE WALKED TODAY!!
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Hello All,
I got the following E-mail from Liz Niemi. She wanted me to pass
it on to
you. Jake is the little boy that was featured on Health Diary.
Just an FYI. Some Aperts families are getting together in Minnesota
on
Saturday July 17th.
I'm real excited because I have not been to a picnic yet or met other
parents face to face. It will be interesting.
PLEASE READ BELOW. JAKE IS WALKING!!!!!!!!!!!!!!!
Deb Picht
-----Original Message-----
From: Niemi, Liz <Liz.Niemi@nmb.norwest.com>
To: 'Randy & Deb Picht' <rldpicht@info.starpoint.net>
Date: Wednesday, July 07, 1999 11:23 PM
Subject: JAKE WALKED TODAY!!
>Hi Deb!
>
>Just wanted to write and let you know that Jake walked today, on his
own
for
>the first time!! I had him backed up against the wall and dangled
his
>Teletubbies video in front of him. He walked right to me without
help!! I
>just CRIED!! What a motivator, but hey...it WORKED!!
>
>If you wouldn't mind, would you please relay my good news on the ListServ.
>My WebTV e-mail is still down and I'm just bursting to tell everyone!
>THANKS!!!
>
>By the way, I got all of the RSVP's for the picnic today. Looks
like there
>will be about 40 people attending! I'm so excited to see everyone!
>
>Gotta run...talk to you soon!
>
>Liz
>
=========================================================================
Date: Fri, 9 Jul 1999
13:31:51 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: surgery
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Kris, we will remember you today as you go for surgery! I pray
that all
goes well for you!
Mechelle
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Date: Fri, 9 Jul 1999
13:59:40 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: To Wendy and Rose
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Hi Rose and Wendy I thought I would throw in my two cents in since
I have
been there and done most of the issues that yu two have discussed and
since
Iam the Oldest (I mean old at 45)aperts. I thought I would write. I
hope you
guys don't mind. I was raised in a home that siad that ther's no such
thing
as the word can't. We said that you can do everything your heart desires,
and I did. I got married to a wonderfull guy (yes he's handicapped
but it
didn't matter it what was inside that counted. Before I got married
I had
dated other men who weren't handicapped and who liked what they saw
and what
was in the inside. This world Iam sorry to say judges people by their
looks,
but I think that will change as more and more people realize that it's
not
whats on the outside that counts it's what on the inside that counts.
It
will be slow in comming (the change) but with more and more handicapped
people speaking out and the Aperts kids and Adults here going out and
proving their selfs we can make a diffences. My parents also believed
in
teaching mehow to act when we were out in public. So just because I
was
handicapped I still had to act my age even when I got older. And Iam
glad
they did because I didn't get as much stares as I did when my friends
acted
stupped because they thought it helped making people feel sorry for
them. I
too had so called mainstream freinds but they sure acted dumb
around me and
I had handicapped friend who at times acted worse. So I think I'll
find your
true friends (which I think alot of the Aperts Adults here have)are
the ones
who care in the inside and not whats on the outside. It's good to be
around
everybody though I agree with you there Rose. Wendy you are correct
in
changing some of your mannerisms. You don't want people to get the
wrong
impression of her. When I worked (yes I worked too!) at a Mental Retarted
School as a teachers-aid there was a lady there who thought I was Mental
Retarted but when my boss told her I wasn't and she saw how well I
conducted
my self as a professional she changed her attitude. So it's inportant
that
we teach our children whether they are handicapped or normal how to
act in
this world. Yes Wendy we Aperts people and normal people have to learn
from
our mistake. My parents let me and I will say I made a lot of them
(like
getting pregnant before getting married and fooling around when I know
I
shouldn't. I am just glad the Good Lord saw me through it and turned
me
around to the right way. My parents tought me from right and wrong
but I
being a stuburn Aperts person and wanting to show the world that I
was
"QUEEN OF THE WORLD" and that I can do what ever normal people can
do! I did
what I wanted! But I will tell you that I did get hurt along the way,
and I
also want to say that I was wrong in what I did and I have asked
foregiveness from my parents and the rest fo my family who I had hurt
at the
time and from God. I get jealous too at times but, I am realizing and
your
sister Jeany has to realize that there are other people that I had
to think
of not just little OLD ME! As a sister like my older sister shows me
which
she's good at it's not just about me or you. It's all of us! My husband
reminds me when ever I get jealous or that Iam just thinking of my
self ,
that it's just not me it's him and my daughter that I got to that about.
No
we can't go back and chang the past but, we Aperts can sure and show
the
world that we are normal people too! I hoed this helped. and I hope
I didn't
afend any body? If I have I am sorry. I spoke from my heart and I wanted
to
sure my feeling about the matter!. Wendy please feel free to E-mail
me
anytime if you have any questions or your sister or you can call me
at
(209)524-2141. That goes for the rest of you guys out there! Iam not
sure
about the time differences but I'll be happy to talk to you all. My
E-mail
is rreed@cableone.net . Maybe sometime Wendy we can get togather. I
would
love to me your sister and you. and tell her that apert people can
have a
normal life and get married and have a healthy and normal baby! Well
I'll
better cut this one short and start another letter for the rest of
you. Take
care you all! Max in very hot sunny Modesto,Calif. Sorry for the mistakes
It's HOT and Iam afraid to correct them because then my computer will
mess
everything up. So Sorry!
=========================================================================
Date: Fri, 9 Jul 1999
23:29:54 +0100
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Steve Stewart
<steve@FSTEWART16.FREESERVE.CO.UK>
Subject: Re: Thankyou...
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Hi from the UK
My sons finger tips were fused He had separate partly separate thumbs
but
his little fingers were fused too. Although his bones were unusual
and
complicated he has a thumb and 3 fingers on each hand. His surgeon
was Mr
Smith at Great Ormond Street hospital in London and now there is not
much my
son will not try to do in his own way even if it takes a while.
Good luck
----- Original Message -----
From: Sumaya Jhetam <sumayaj@TRUSTCELL.CO.ZA>
To: <APERT@LISTSERV.AOL.COM>
Sent: Wednesday, July 07, 1999 12:38 PM
Subject: Thankyou...
> Hello,
>
> Thankyou everybody for showing so much interest in Maryam, for offering
> so much advice & for such kind words of encouragement.
>
> Maryam goes to "Wentworth Hospital" in Durban in South Africa.
Here a
> panel of doctors study her x-rays & decide from here what is
to be done.
> But, I have shown all your e-mails to her parents & they have
agreed to
> get a second opinion but we are not to sure as to whom to go to.
We
> will scout around & or maybe you guys could assist me.
>
> The doctors have said that the tips of the bones of her index, fore
&
> ringfinger are fused together and they therefore cannot separate
them.
> Is this true?
>
> I look forward to a reply!
>
> Thanks...
> Sumaya.
>
=========================================================================
Date: Fri, 9 Jul 1999
18:56:18 EDT
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: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: ALL THE BEAUTIFUL PICTURES
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
DEAR DEBBIE AND FAMILY, HOPE YOUR HEALTH IS BETTER AND THE WHOLE FAMILY
IS
DOING GOOD. LOOKING FORWARD TO THE PICS, I'M CARLEE'S GRANDMOTHER.
TAKE CARE
AND THE BEST TO THE WHOLE FAMILY. MARILYN
=========================================================================
Date: Fri, 9 Jul 1999
19:05:06 -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: karen foster
<foster@ICONTECH.COM>
Subject: Various
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
It has been a while since I have been in touch but,I have read every
e-mail
on the server. I want to welcome all the new families and send my hello's
to
everyone.For those of you who don't know us we are the Foster's from
Scranton Pa.
My name is Karen and my husbands name is Bill. We have seven children
and
our youngest child Billy was born with Apert's in March of 1997.
Things have been kind of crazy around here with the kids out of school.
I
wanted to let everyone know that Billy is well and that he will finally
be
able to have his last fingers released on July 20th. He will have his
third
and ring fingers on both hands done. The doctor is saying that he is
pretty
sure that he will be able to get all five fingers but, he can't be
sure
until he gets going. We are very pleased with other releases and completley
trust his doctor.Billy is still very delayed in his speech and has
speech
three times a week. He is able to sign many things but, he is picking
up a
few new words. He has no trouble letting us know what he wants. He
wants to
be outside from morning til night. He has been in time out at lest
once a
day and sometimes more.I am so pleased with his progress even the terrible
two's.
I did want to comment on the blood bank thing.Billy gets blood from
the bank
most of the time and we have donated whenever possible. We have talked
to
the doctors and many others and have decided to use the bank whenever
it is
needed. It is normal the be afraid but, it is something you have to
come to
peace with. We can't go making ourselves crazy worring about all of
the bad
things that can happen when there is no way to know for sure if our
kids are
getting donated blood or not. Todays hospitals have to be so careful
and I
believe that they screen very carefully.Childrens hospitals do
have their
own blood banks and do their own testing . Think of all of the kids
that get
blood every year. The hospitals have to be sure so that their reputations
stay in tact. Anyway, is there any way to find out about the incidents
of
blood related infections at the hospital where you child gets his or
her
surgeries done? If there is I would like to know. If not maybe it is
worth
looking into. I am sure someone has the information. After all there
are
ways to find out if your child is sleeping in a safe bed or riding
in a safe
car. There should be a way to know if the are safe while getting blood
from
a blood bank.One more thing about this subject. When my daughter was
born
five years ago she was only 2lbs and 13ozs. and spent time in our neonatal
unit. She did end up having to have a bowel surgery and had to have
many
transfusions during her hospital stay.We wanted to have our oldest
daughter
donate blood since they have the same type. The doctors at the unit
said
that siblings should not donate because of the fact that if in the
future
the child should need an organ transplant and has had blood from his
sibling
the sibling would not be able to give that child an organ. This is
really
what we were told.And we have talked to others who were told this also.
Anyway, hope eveyone is well and good luck to all future surgery. I
am happy
to hear that Andrea is doing well and Courtny.
Also, my oldest daughter has joined the Army and will be leaving in
Augt. I
am still in shock and a little worried but also very proud.
Please keep Blly in your prayers and I will let you know when his surgery
is
over.
I have started sending out Billy's pictures and love all of the ones
we have
received.
Karen (PA)
=========================================================================
Date: Fri, 9 Jul 1999
21:01:17 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Niagara Falls get together
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Don,
I pretty much agree with you on the issue of giving out information.
I care
not to have my child exploited for the whole world to "look" at.
I am
somewhat of a private person and would prefer to know that things are
secure
and I have control over who sees them. I have no problems talking
about
Andrew to people on the listserv, but that is as far as it goes.
That is
why we choose not to have a web page with Andrew's face plastered all
over
it. My husband has a disability and knows what it is like to
be stared at.
He does not want that for his son. I also do not want unwanted
e-mails on
my computer from people from "who knows where". And I want to
thank you,
Don, for keeping out things so private (amongst ourselves).
That is my 2 cents.
Lynn Thornquist
Don Sears wrote:
> Hi Wendy,
>
> This has intentionally not been done because we're very aware of
privacy
> issues. Generally, it is not a great idea to tabulate and post
personal
> information on the web. There are people out there who, unfortunately,
> would try to use this information in a number of unsavory ways.
They
> often use automated programs (robots or 'bots') to cruise web page
after
> web page looking for information that they can collect and then sell
or
> otherwise misuse.
>
> The information that has been posted on Teeter's Page and the personal
> pages is not easy for someone to get because it is not in an orderly,
> database-style format. Each individual family has decided what
to put
> or not put on their own web page.
>
> As far as I am concerned , you are anyone else is welcome to collect,
on
> a voluntary basis, any information that the families are willing
to
> give. The picture exchange information is temporary in nature
and will
> be deleted as soon as the picture exchange is complete. Additionally,
> you have to know the web address in order to access the information.
> That's why there is no link from Teeter's Page.
>
> Each reader of this listserv signed on with the belief that their
> personal information would be protected. That's a promise that
I will
> always keep.
>
> I can look into setting up a secured, password protected area on
our
> server that would allow users to update their own information.
I'd like
> to hear what the rest of you think about this issue. If I'm
way off
> base, I'll be glad to help put the information together.
>
> >Also, I don't know if this has been done, but I would like to see
a
> >database of everyone that has become part of this Apert family.
I
> would
> >like to have everyone's address, child's name who has Apert and
his/her
> >birthdate, e-mail address etc. All the pertinent details to
contact
> >people within an age group or a particular area of the World!
I'm
> sure
> >there are small lists here and there with the photo exchange etc.,
but
> if
> >we could have one place or a web site that will link to the database,
> that
> >would be great. Amongst the million things I have to do, I
would be
> >willing to put this together. It can be part of my learning
to use the
> >web features of Filemaker Pro which would be the database I would
use
> >since I teach Filemaker in my senior classes. I would set
up a
> database
> >similar to what's already on the apert web page, but with all the
> details
> >necessary to contact people and with full birthdates. Don
- has this
> been
> >done by anyone? If not, people can send me their updated information
> and
> >I will put together a database that can be published to the web
site.
> I
> >can take some of the information that is already on the web site,
but
> if
> >there is updated information needed, people can send this along.
> >
> >Wendy Pak
=========================================================================
Date: Fri, 9 Jul 1999
21:10:05 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Thankyou...
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Welcome Sumaya,
My name is Lynn Thornquist, and I haven't not been around much, but
I just
recently had my second child and two is definately harder than one.
My son,
Andrew, is going to be 3 years old in September. He had his first
Cranial
Surgery when he was 3 months old, his Frontal Advancement when he was
10
months old. He has had 2 hand surgeries (at 5 months and 11 months).
I
agree with everyone else about the hands. You definately need
a second
opinion. The tips of the fingers is not a hard surgery at all,
at least
that is what Andrew's hand surgeon has said. I too have never
heard of only
getting the thumb and pinkie fingers. Are the thumbs fused with
the rest of
the fingers? As I think back, I believe that Andrew's tips were
fused as
well, and he has all five fingers with great manipulation. Andrew
is able
to pick up individual peas and can hold a cup with one hand.
I will be writing more with what has been going on with my life in another
e-mail, so stay tuned.
Lynn Thornquist
=========================================================================
Date: Fri, 9 Jul 1999
21:18:05 -0400
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Common nail.
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Sumaya,
My son Andrew also had that same nail sharing. The nails on his
index
fingers are a little smaller, but not to worry, they are getting bigger
over time. Dr. Upton (our Plastic Surgeon) says that it is possible
for
nail transplants if we want. So far we are satisfied.
Lynn
=========================================================================
Date: Fri, 9 Jul 1999
21:20:30 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Database etc.
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Very well said, Rose. I couldn't have found such beautiful words
and put so
eloquently.
Lynn
=========================================================================
Date: Fri, 9 Jul 1999
21:37:15 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Just an update!
MIME-Version: 1.0
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Hello everyone,
Lynn here, I haven't been writing much because it is difficult to find
the time to get on and read all the e-mails. Now with two children,
I
can't find anytime for myself. But tonight I am in luck.
Both children
are asleep and my husband is at a friend's house. I feel so free
from
it all. I just don't know what to do first. I thought maybe
I would
clean up, since I don't have much time for that either, but that doesn't
sound like much fun, so here I am.
I want to welcome all new families and hope that the listserv is as
wonderful for you as it has been for me.
I have a couple of things to say tonight, so hold on it could take
awhile.
First of all, does anyone out there have Blue Cross/Blue Shield HMO?
If
so, I would like to know if you have had any problems with them paying
for things, including surgeries. I will be going back to work
full-time
and my husband is going to be staying home with the kids. The
reason
for the switch is because he is going back to school nights to learn
about computers and learn how to trouble shoot them/repair and so
forth. I start this Monday and am so upset. How did any
of you other
mother's handle going back to work and leaving your kids? It
is only
for a year, but still, I cry almost every other day for the past 2
weeks. I am lucky in the fact that it is my husband who will
be home
with them.
Just an update.....Andrew will be starting hand surgery again on
September 29. I believe Dr. Upton will be starting with his left
hand.
The thumb will be elongated, with bone taken from his hip, the index
finger will be thinned and straightened, and the "pinkie" will also
be
thinned down some. I am so excited to see the results.
This is suppose
to give Andrew more grasp with his pinscher grasp and pinkie to thumb
manipulation. There will also be much more dexterity when all
is said
and done. I will definately let you all know how it turns out.
I will be sending out my pictures soon, but I was waiting to get a good
picture of Andrew and Meghan together and now I'm just waiting for
them
to be developed. I have a good one of Andrew alone, but I know
that a
family shot is important as well. Sorry, but no parents in this
one.
Talk to you all real soon.
Lynn
=========================================================================
Date: Fri, 9 Jul 1999
21:40:36 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Frank & Annette
Contrino <contrino@BUFFNET.NET>
Subject: privacy
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Folks,
Please be aware that *nothing* you put on the internet is private.
Each and
every message you post and all the information on Teeter's Page is
open to
anyone. Once you place something on the net there's no telling
where it
could end up. Don somewhat hides the information by not putting
links on
the main page, but the information is there and available if someone
wanted
to hunt hard enough to find it. Everytime you look at something,
you've
just made a local copy of it on your PC. Text, pictures, etc.,
are all
downloaded simply by browsing. If privacy is your goal, the internet
is not
the place to be.
=========================================================================
Date: Fri, 9 Jul 1999
21:44:25 EDT
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: Frank & Annette
Contrino <contrino@BUFFNET.NET>
Subject: Re: other reunion locations
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Just a quick comment on NIagara Falls. They are beautiful. I went there
when
>I was a teenager to visit a friend. But as far as a vacation with
children
>this is not a good place. I personally thought the Beach was a great
place.
>Because there aren't many kids that don't love the water. Just my
2 cents
>worth.
Christy,
Just curious...
What makes you say Niagara Falls is not a good place for a vacation
with
children???
=========================================================================
Date: Fri, 9 Jul 1999
21:54:01 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Re: Fw: JAKE WALKED TODAY!!
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Way to go Jake!
Sherry Roehl
Randy & Deb Picht wrote:
> Hello All,
>
> I got the following E-mail from Liz Niemi. She wanted me to
pass it on to
> you. Jake is the little boy that was featured on Health Diary.
>
> Just an FYI. Some Aperts families are getting together in Minnesota
on
> Saturday July 17th.
>
> I'm real excited because I have not been to a picnic yet or met other
> parents face to face. It will be interesting.
>
> PLEASE READ BELOW. JAKE IS WALKING!!!!!!!!!!!!!!!
>
> Deb Picht
> -----Original Message-----
> From: Niemi, Liz <Liz.Niemi@nmb.norwest.com>
> To: 'Randy & Deb Picht' <rldpicht@info.starpoint.net>
> Date: Wednesday, July 07, 1999 11:23 PM
> Subject: JAKE WALKED TODAY!!
>
> >Hi Deb!
> >
> >Just wanted to write and let you know that Jake walked today, on
his own
> for
> >the first time!! I had him backed up against the wall and
dangled his
> >Teletubbies video in front of him. He walked right to me without
help!! I
> >just CRIED!! What a motivator, but hey...it WORKED!!
> >
> >If you wouldn't mind, would you please relay my good news on the
ListServ.
> >My WebTV e-mail is still down and I'm just bursting to tell everyone!
> >THANKS!!!
> >
> >By the way, I got all of the RSVP's for the picnic today.
Looks like there
> >will be about 40 people attending! I'm so excited to see everyone!
> >
> >Gotta run...talk to you soon!
> >
> >Liz
> >
=========================================================================
Date: Fri, 9 Jul 1999
21:55:27 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: well wishes
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Kris, you will be in our thoughts. Hope the surgery goes well
and best
wishes for a speedy recovery.
Sherry Roehl
=========================================================================
Date: Fri, 9 Jul 1999
22:01:33 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: Frank & Annette
Contrino <contrino@BUFFNET.NET>
Subject: Re: Sleep Study
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>Instead, he ordered a sleep study. Which is fine. But wouldn't
taking out
>the tonsils have to be done anyway? Isn't it better to do it
now while she's
>young than later??
If the sleep study shows that her sleep patterns are normal, the ENT
won't
remove tonsils simply because they're large. If the sleep study
shows
problems which are attributable to the enlarged tonsils, I'm sure your
ENT
will schedule a surgery to remove them or determine some other way
to
correct the problem. A sleep study may detect that there's something
else
wrong which can be corrected without surgery.
Frank Contrino
contrino@buffnet.net
=========================================================================
Date: Fri, 9 Jul 1999
22:09:47 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Greg and Sherry
Roehl <gnsroehl@FLASH.NET>
Subject: Young & Restless for Carol
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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I watch this when I can find the time. Which means occasionally.
:-)
Is there anything specific you want to know? I'll tell you if
I can.
Sherry Roehl - mom to Kieran-3mos w/Apert's, Laney-4 w/CVS & Bailey-7
gnsroehl@flash.net
=========================================================================
Date: Fri, 9 Jul 1999
20:35:46 -0700
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Sender: Information exchange and
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: "Soaps"
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Carol~
I use to watch both!!!! I love them, but not sure if I remember
what was
going on 3 years ago!! hahaha
But I do love to talk about them.
Dawn
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Date: Fri, 9 Jul 1999
23:11:26 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: "Soaps"
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Carol,
You have come to the right place as far as Days of our lives is
concerned. I love that show. E-mail me privately at
libragirl18@hotmail.com with any questions and I will do my best to
fill
you in.
I do not watch young and the restless though, so I would be no help
there.
Kelly Spadini
=========================================================================
Date: Fri, 9 Jul 1999
23:26:14 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Ear infections
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Hi all,
I was thinking about it and I know that I have always had problems with
ear infections and have had multiple sets of ear tubes put in and taken
out. I have always had a little trouble hearing, and do have a little
hearing loss. That may possibly be due to listening to LOUD music as
teenagers like to do. I will ask my mom about it and will write and
tell
you what she says.
Bye For now,
Kelly
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Date: Fri, 9 Jul 1999
23:32:46 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: OOOH OOOH OOOH
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OOH! OOH! OOH!
I am going to have that surgery next summer. I would love to know how
it
went and particularly how the recovery period is. If you want, you
can
e-mail me privately at libragirl18@hotmail.com.
By the way, how old is Chris? I will be 18 when I have it.
Bye,
Kelly Spadini
=========================================================================
Date: Fri, 9 Jul 1999
23:35:14 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Kris surgery coming up!
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Ruth,
Wow what a way to celebrate one of the most important birthdays in a
girls life. Hope she has some great friends to celebrate it with.
Tell
her I said happy sweet 16th. Give her my best for her surgery.
=========================================================================
Date: Fri, 9 Jul 1999
23:36:38 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Kris surgery coming up!
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Sorry Ruth. I guess I got a little excited. That message that you just
read was from me(Kelly Spadini)
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Date: Fri, 9 Jul 1999
23:42:15 -0700
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Thursday's guests
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Hey all,
Boy am I chatty this evening. I was wondering. What time do you meet
in
the chatroom in California time. I would really like to try and make
it
this time. I guess I will have to write myself a BIG note and
stick it
on the computer. Hope to see you there.
Kelly
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Date: Sat, 10 Jul 1999
00:13:09 -0700
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: other reunion locations
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We got back last week from a family vacation
to Niagara Falls and
DisneyWorld. Matthew (2), Melanie (4), Stephanie (7), Charity
(9) and
Roxy(10) say that the most memorable part of their vacation is not
Mickey Mouse but the awesome multiple rainbows they saw every afternoon
at
the Falls. This was our first (but not last!) visit and I would
love to go
back again. I'd highly recommmend a visit to this "wonder of
the world." The good news is that the U.S. dollar does
go a little farther
in Canada:).
Rose
La Mirada, CA
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Date: Sat, 10 Jul 1999
08:46:23 EDT
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From: Jenngram@AOL.COM
Subject: Re: Thankyou...
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Sumaya,
Just to kep you informed, my son Jordan ( 2yr in Sept) had the tips
of the
same three fingers fused on each hand and we now have all of the fingers
released. He made it through without losing any, although that was
always a
risk, but one we chose to make. And he uses them fine and has been
discharged
from occupational therapy.
Definitly get a second opinion
Jennifer Graham
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Date: Sat, 10 Jul 1999
09:21:40 EDT
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From: Jenngram@AOL.COM
Subject: Re: Just an update!
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Lynn,
Is Dr. Uptond doing one finger at a time, or the entire left hand? And
how is
recovery suppose to be? ANd did he mention anything about growth plates?
I
thought the fingers couldn't be straightened until growth plates were
better
fused. Just curious as we may be down the same road in the not ot distant
future...BUT as we have been a WONDERFUL 3 months without even having
to
THINK about having a surgery in the future, I hate to even raise questions
that cause me to ponder the next one!!!
Also, FYI for everyone......Jordan loves his "school" he paints, colors
and
plays...and his drawings look like everyone elses, which I was curious
about
due to fine motor skill development. He is in a "normal" learning center,
and
besides one infant I saw yesterday w/ cleft lip, hes the only one w/
physical
differences.....BUT......does wonderfully and we may even have some
friends
his age this year for his 2nd b-day party!!! And, let me, he isn't
sad to see
me go off to work, as I get a big wave and if I talk to his teacher
he starts
pushing me out of the room and telling me bye-bye!!!! Soooooo, all
this has
helped make what could have been a hard transition back to work, very
easy.
It has been easy to see how he needed social interaction, not to mention
how
badly I needed it as well.
He is still a bit behind on speech, so we start that Monday at 7am thank
you!! I am not even thinking how early we will have to get up to be
there.
But it must be done before work/school!!! Lord help me!!!
Hope everyone is doing well, I have been out of touch w/ work and all.
My
computer doesn't even get turned on until Sat am!!!!
Hang in there Lynn, you'll be fine after the first few days back!!!
Jenn(Columbus, Ohio).......I think I brought the drought w/ me to Ohio
form
Florida, b/c its raining like crazy there, and barely a drop here!!!!
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Date: &n