Rich and Karen,
I can't help you on your first couple of questions because our daughter
Brenna has Crouzons, but we received a booklet from About Face called
<italic>Apert, Crouzon and other Craniosynostosis syndromes</italic>
which is thourogh but fairly brief. It has some good basic info.
and good illustrations. I use it a lot for a brief educational tool.
Thier address is...
About Face INT
99 Crowns Lane 4th floor
toronto, ON MSR 3P4
(800) 665-FACE
abtface@interlog.com
or
About Face USA
PO Box 93
Limekiln,PA 19535
(800) 225-FACE
AbtFace@aol.com
Good luck with Andrew's surgery this Friday. You will be in our prayers.
Hugs, Robyn J.
>Has anyone thought about putting together a package of written
>information and websites that could be given to the parents of
>new born Apert/crouzon (SP!) babies. Imagine how much this would
>help parents who are still "in shock".? Well, just a thought.
>
=========================================================================
Date: Wed, 21 Oct 1998
21:53:13 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Eye Muscle Surgery
Mime-Version: 1.0
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Belinda,
Thanks for the great explanation. That makes a lot of sense.
I never
really understood (or actually questioned) why Brenna's eyes could
focus
better with her glasses on. She has astigmatisms and her eye's
wander in
the upward/outward V pattern when she doesn't wear her glasses.
Usually
when she is trying to focus on something more than about 5 feet away.
Hugs, Robyn J
>"She's far-sighted enought that she'll
>need glasses anyway. With the glasses on, though, it helps her
eyes relax so
>that she doesn't have to focus so hard. When she concentrates
really hard to
>focus, her eyes cross. The glasses help her eyes to relax enough
to focus.
=========================================================================
Date: Thu, 22 Oct 1998
08:00:20 EDT
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From: Jenngram@AOL.COM
Subject: Re: Finger overlapping
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Andrea,
I know Jordans doctor is talking of doing some finger straightening
and some
'tidying up" of his fingers in a few years...frm how he described it,
it would
be just about as involved as the syndactly releases...a slow tedious
process,
but worth the outcome...
Don,
Hope your surgery goes well...sounds frightful..
Jenn(Tampa/St.Pete...will it ever drop below 80 degrees?????)
=========================================================================
Date: Thu, 22 Oct 1998
10:48:39 -0700
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Fingers
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Autumn greetings to all! Roxy (9 years old)
had skin grafts taken
from her groin area as well as from her inner wrists for her fingers.
We recently had and evaluation by an orthopedic hand specialist
regarding "fine tuning," i.e., deepening the web spaces and
straightening out one slightly curved finger (she's got 5 digits in
each
hand). It's mainly cosmetic. Her hands function great!
We let her
make the decision and she has opted not to do the elective
corrections. That's fine with us!
Rose
La Mirada, CA
=========================================================================
Date: Thu, 22 Oct 1998
17:37:02 -0500
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From: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: surgery cancelled
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Hey guys,
From experience, don't ever have surgery right before Christmas. Last
year,
Jake's second cranial surgery was December 23. It was no picnic to
spend
the holidays in the hospital.
Laurie Bailey
jkb@elpaso.net
----------
> From: Chad & Denise Graham <cgraham@INFOAVE.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: surgery cancelled
> Date: Wednesday, October 21, 1998 8:23 AM
>
> Daryl's cranial surgery has been cancelled for Nov. 5. The
only other
date
> they have available is the week before christmas. We said no
way and
will
> just have to asorb the insurance turnover and do the surgery in the
new
> year.
>
> I am still reading
all the e-mails, but I have not responded much
> lateyly. Things have been busy (crazy) here and I am in the
process of
> trying to slow down my life. Hope everyone's surgeries go smoothly!
>
>
>
Denise Graham
=========================================================================
Date: Fri, 23 Oct 1998
09:51:01 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Surgeries
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Hi Karen,
My son, Collin, got a cold when he was about 4 yrs old & his breathing
got
real bad. I took him to the ENT doctor who put him on steroid type
medicine &
sent us home thinking this would open up the airways. The next day
he was
worse so I took him again - he could barely breath - and at that time
the doc
immediately put him in the hospital, started him on an IV drip with
steroids.
In order for them to do this they had to drug him into "parilization"
so he
couldn't move. He was fed by tube & was on oxygen. For almost 3
days he was
like this hoping the swelling would go down but the steroids never
did work so
he went in for emergency surgery where his tonsils were removed. Our
Dr. said
to remove his adenoids could cause his speech to be "nasal" if you
know what I
mean by that. Anyway, the surgery was a huge success. Collin
hasn't had
nearly the trouble breathing anymore.
Hope this helps in some way.
Shirley (Hartford, AL)
tanranch@aol.com
=========================================================================
Date: Fri, 23 Oct 1998
10:01:16 EDT
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From: Yonstein@AOL.COM
Subject: Re: HAND Questions
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Hello Everyone:
No, Emily's surgery is not to release her thumbs. She was born with
the web
space already and thumbs released. To the Hartleys, we are using
Dr. Chiu out
of Columbia Pres. Emily is scheduled for Nov. 4th. One
of the reasons that
we opted for him is because of the procedure he uses. I understand
it to also
help reduce the chances of overlapping in the future. What he
does in the
first surgery is to cut the bones at the tips of the fingers between
the ring
and middle and middle and index fingers. She will be casted for
3-4weeks
afterwards. Then he will go and do the same thing on the right
hand. Then he
will go and release each individual finger, one hand at a time.
It's going to
be a very long process, 8 to 10 surgeries, but we decided it would
be worth
it.
He explained that when the bones are fused at the tip, the finger grows
and
bends toward the middle, almost curved. That's why he separates
at the tip
first, to allow the bones to continue to grow straighter. Oh,
and he uses
skin grafts also.
Hope this info helps.
Sorry about the cancelled surgeries. I do agree with no holiday
surgeries.
After the surgery on the 4th, we will be waiting until February for
the next
one.
Hope everyone else is doing well and Don is recovering nicely.
Best wishes,
Janine
=========================================================================
Date: Fri, 23 Oct 1998
15:04:47 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: How to get a place on Teeter's
page
MIME-Version: 1.0
Content-Type: text/plain
Hi everyone!
We're so excited that so many of you have responded to our request for
personal information. Thank you, and keep them coming!
Quite a few of
you have asked in various ways how to go about getting the information
to me for a web page for your child or family. Here's what to
do:
Look at some of the existing web pages on Teeter's page and decide
whether you want to put out just pictures, just text, or both.
You can
tell your story, or just put up some family pictures with captions.
Also decide how much personal information you want to share:
names,
mailing address, phone, email address. Any colors or background
image
you would like to use. Get a general idea of how you want the
page laid
out.
Then, get the information to me, either the electronic way or the snail
mail way.
The electronic way: Scan your pictures and email them to me as
email
attachments. Pictures should be .jpg format, 150 dpi. I
will convert
them to this if you send in other formats. Write the text in
a word
processing document or simply send it as email. Describe how
you want
the page to flow, or just leave it to me.
The snail mail way:
Gather up your photos and mail them to me at: Don Sears, 1900
Shadowood
Drive, Columbia, SC 29212. I will scan them and return them to
you
unharmed. Be sure to include a guide to what order you'd like
the
photos presented, and any captions you'd like. I would still
prefer
that any large blocks of text be sent either on disk or by email to
avoid lots of typing.
That's it! I'll do the rest. I am finishing lots of little
details on
our current pages, and will do any new pages in the order they are
received. For those of you who have mentioned problems to me
about
existing pages, I am keeping those in a separate mail file and am
getting to them one by one.
Looking forward to lots of new faces!!! Have a great weekend -
Don
=========================================================================
Date: Fri, 23 Oct 1998
16:01:03 -0400
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: support for Apert Syndrome
friend
Comments: To: "chandlerplott@mindspring.com" <chandlerplott@mindspring.com>
MIME-Version: 1.0
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Congratulations to your friends!!!
The best thing you can do is hook your friends up with us through our
email listserv at http://www.apert.org/listserv. All of our parents
are
there, ready to help anyone who is new. It's a long road, but
we're all
a little further down it than your friends are, and it really helps!
Don
> -----Original Message-----
> From: chandlerplott@mindspring.com [SMTP:chandlerplott@mindspring.com]
> Sent: Thursday, October 08, 1998 9:36 PM
> To: catndon@apert.org
> Subject: support for Apert Syndrome
friend
>
> I have a friend who just had a baby girl on monday! She
was born
> with Apert Syndrome. She has gotten alot of support from friends
and
> relatives, but, I would like to know more on the diagnosis. They
are
> still running tests on her so it may still be awhile before they
are
> sure of her abilities and so forth. I guess I dont really know what
I
> am asking for, anything you can tell me will help a great deal!!!
My
> email is: chandlerplott@mindspring.com
> <mailto:chandlerplott@mindspring.com>
=========================================================================
Date: Sun, 25 Oct 1998
21:57:29 -0600
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From: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: HAND Questions. Rich &
Karen Hartley
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Hey Hartleys,
Laurie Bailey here. I think we are the tissue expander experts on the
listserv. I am always happy to let people know about this procedure.
Jacob
is on his third set of expanders for his third digit release. Jacob's
hands
were the "tulip" shaped ones.
This procedure is where the doctors insert balloon like expanders
underneath the skin. The expanders are then filled with saline at timed
intervals set up by your doctors. When the doctors determine there
is
enough expansion or the skin cannot expand anymore, they go in, take
out
the expanders and do the digit separation all at the same time.
This procedure is more time consuming due to the time it takes to fill
the
expanders. I feel that we had the time to spare knowing Jake wasn't
going
to have as many grafting scars. He has had to have one small skin graft
in
his groin area. This scar is almost completely gone.
You can see on Jacob on Teeter's page. I included pictures of Jake's
first
set of expanders. This will give you an idea of how large they can
actually
get.
Some doctors won't do the procedure because they say there isn't any
evidence of long term affects. So far, we have been very pleased with
our
results. Our doctor, Dr. Bruce Bauer, Children's Memorial Hospital,
Chicago, is well known for his use of expanders when dealing with large
patches of nevi (large birth marks). If I remember correctly, you are
from
Algonquin? I can give you his phone number if you would like more
information about it.
I hope the information helps.
Laurie Bailey
jkb@elpaso.net
----------
> From: rhartley@DZIS.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: HAND Questions. Rich & Karen Hartley
> Date: Wednesday, October 21, 1998 9:20 AM
>
> Hi everyone, It's been some time. Welcome aboard to all
> the new members. Our Andrew (Born 4/30/98) is going for
> his pre-op today and has a cold so let's just hope. He is
> scheduled for the finger release on both hands this Fri 10/23.
> Andrew will have 4 fingers on both hands.
>
> Q- Has anyone any information on Tissue expanders versus
> skin grafts, or any papers written
on this subject.? What are
> the advantages of either.
>
> Q-Any info on irritation at the site of the skin graft with relation
> to diaper irritation etc..
>
> Q-Who wrote about Dr. David Chiu in NY Columbia Presbyterian
> Hospital. Apparently he is able to
separate fused bones in the
> hands.?
>
> Any information on the above questions will be greatly appreciated.
>
> Has anyone thought about putting together a package of written
> information and websites that could be given to the parents of
> new born Apert/crouzon (SP!) babies. Imagine how much this would
> help parents who are still "in shock".? Well, just a thought.
>
> Take care.
> Your friends in Pennsylvania.
> Rich & Karen Hartley
> 118 Hartranft Avenue
> East Norriton,PA 19401
=========================================================================
Date: Mon, 26 Oct 1998
12:47:25 -0600
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From: tcgraves <tcgraves@BELLSOUTH.NET>
Subject: TEST
MIME-Version: 1.0
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We haven't received any email since Friday from the list serv, so I
was just
testing to make sure all is OK with my email...
=========================================================================
Date: Mon, 26 Oct 1998
13:15:19 -0600
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From: Carlos Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject: QUESTION
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Hello everybody.
I hope you are all doing
alright with surgeries and recoveries.
Since the list is going
a little slow lately, I am going to throw some
wood in the fire to see what happens.
About 2 years ago Felipe
had surgery to have a shunt placed on his
head. This is not new, since most of the kids had to do that. Before
the
surgery he was starting to talk a few words, 3 or 4, which was a start,
and he would put some attention to some of his toys, play longer, act
like his twin brother.
It has been a while that
he changed a lot. He doesnt say one word, he
gives very little attention to his toys, he doesnt play much with his
brother, that means, he doesnt have the normal behavior any more. Only
recently we noticed that this started after he had his shunt surgery.
My question is: Did any
of you noticed a change in the children
behavior after the shunt was placed in their brains?
By the way, have any of
you seem the x-ray of their heads with the
shunt on it? The shunt goes up to the middle of their brain (at least
on
Felipes brains).
Thank you for any input.
Ize Family. (Claudia, Carlos,
Felipe and Rafael).
=========================================================================
Date: Mon, 26 Oct 1998
14:11:36 -0600
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From: tcgraves <tcgraves@BELLSOUTH.NET>
Subject: Re: QUESTION
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Nicholas had a shunt placed when he was 21 months old... we noticed
a
drastic change in him and hisbehavior and development shortly thereafter,
but for the better.. he used to 'bang' his head on things.. I suppose
to try
and relieve some of the pressure.. and he didn't talk before the shunt
and
even though he still had the trach he began to at least try to talk
afterwards and he had just begun to start walking and that improved
greatly.. of course, it may have anyway... but we have not then nor
since
that I can recall noticed any adverse affects .. it is something however
that I would question the Dr. about.. and yes, I have seen Nicholas'
x-ray..
quiet amazing..
No help I know.. but my input anyway...lol
Carol Graves
-----Original Message-----
From: Carlos Ize <ize@MASTER.CEAT.OKSTATE.EDU>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Monday, October 26, 1998 1:22 PM
Subject: QUESTION
>Hello everybody.
> I hope you are all doing
alright with surgeries and recoveries.
> Since the list is going
a little slow lately, I am going to throw
some
>wood in the fire to see what happens.
> About 2 years ago Felipe
had surgery to have a shunt placed on his
>head. This is not new, since most of the kids had to do that. Before
the
>surgery he was starting to talk a few words, 3 or 4, which was a start,
>and he would put some attention to some of his toys, play longer,
act
>like his twin brother.
> It has been a while that
he changed a lot. He doesnt say one word,
he
>gives very little attention to his toys, he doesnt play much with
his
>brother, that means, he doesnt have the normal behavior any more.
Only
>recently we noticed that this started after he had his shunt surgery.
> My question is: Did any
of you noticed a change in the children
>behavior after the shunt was placed in their brains?
> By the way, have any of
you seem the x-ray of their heads with the
>shunt on it? The shunt goes up to the middle of their brain (at least
on
>Felipes brains).
> Thank you for any input.
>
> Ize Family. (Claudia, Carlos,
Felipe and Rafael).
>
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Date: Mon, 26 Oct 1998
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From: jamerman@UTI.COM
Subject: Re: question
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Claudia,
Nick has had a v-p shunt since he was four months old. Luckily
he has had
no problems with it. But in answer to your question, no I have
not seen
any difference in him, but again he was so young when he got it.
Judy
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Date: Mon, 26 Oct 1998
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: HELP!!!!
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Hello everyone. I am at my wits end and hope you can help.
Carmen just
had her thumbs released September 25. They are healing very nicely;
however, the doctor wants her to wear splints at night to maintain
her web
space and to encourage her thumbs to go out rather than in toward her
other
fingers. Did any of your children wear splints after thumbs were
released?
Was the therapist successful in fitting a splint that would work?
If so,
can you PLEASE describe it to me. Carmen has the rosebud type
hands (I
think). Thanks in advance.
Robin Hill
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Date: Mon, 26 Oct 1998
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From: Jenngram@AOL.COM
Subject: Re: HELP!!!!
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Jordan had the rosebud type hands as well, and the only splint he wore
was for
about 2 weeks post surgery and that one encompassed his entire arm....like
a
cast
After 2 weeks he was free of all bandages and splints and has a wonderful
deep
webspace with tons of mobility (he can pick up a Cheerio w/ his thumb
and
pinky)...his thumbs do bend outward, but there is nothing short of
breaking
them and straightening them that will correct it. That will be done
later on
in his exciting surgical experience.
On another note.....I was just curious...why do some of the kids have
the
shunts placed so late....after the first year or later? What was it
that
changed that made the doctors decide that they needed one then as opposed
to
when they were first born.
Hope all is well w/ everyone...Geering up for Trick or Treating here...hoping
Hurricane Mitch stays away!!!!!!!!!!
Jenn(Tampa/St. Pete)
=========================================================================
Date: Mon, 26 Oct 1998
19:43:39 -0600
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From: tcgraves <tcgraves@BELLSOUTH.NET>
Subject: Re: HELP!!!!
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-
>On another note.....I was just curious...why do some of the
kids have the
>shunts placed so late....after the first year or later? What was it
that
>changed that made the doctors decide that they needed one then as
opposed
to
>when they were first born.
In our case, it was because the doctors up to that point said he didnt
need
one, (he did !).. but when we changed doctors and took him to Chattanooga
to
Dr. Sargent, he immediately sent us across the street to Dr. Strait
(the
neurosurgeon) and we had a scan done and they hospitalized him the
next
day... we had had a scan done 2 months prior in Birmingham (only by
our
insistance) and they assured us everything was fine.. thats why I say,
no
matter what the doctors say, if you know something is not right...
keep on
til you find someone who will listen !!
Within 2 weeks of the shunt placement, he was like a different child.
>
>
>Hope all is well w/ everyone...Geering up for Trick or Treating
here...hoping
>Hurricane Mitch stays away!!!!!!!!!!
>
>Jenn(Tampa/St. Pete)
>
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Date: Mon, 26 Oct 1998
20:52:11 EST
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From: GSieb91515@AOL.COM
Subject: Re: memo from liz
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Liz-
Thank you for the encouraging words. Everything you said is so
true and it
was good to hear it now. We too had a similar experience as Judy
and Nick in
a store with rude comments from another child. It really does
crush you when
someone is hurtful to your child no matter how old they are.
Your mom was a
very courageous and smart woman. She raised you to be a self
assured,
confident individual who knows she can do anything if her mind says
to.
Thanks again for the uplifting, timely posting.
Best wishes,
Brenda
Houston
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Date: Mon, 26 Oct 1998
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From: GSieb91515@AOL.COM
Subject: Re: First time on!
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Christina-
Thanks. We will pray that Zoey keep in good health prior to her
hand surgery
on the 24th. I always dread the hand surgeries because of dealing
with the
bandages. We always have problems keeping them on. Jonathan
will have to
spend his 2nd birthday in bandages, but I didn't want to delay just
for that.
Keep us posted.
Brenda
Houston
=========================================================================
Date: Mon, 26 Oct 1998
21:09:58 EST
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From: GSieb91515@AOL.COM
Subject: Re: Eye Muscle Surgery
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Laura,
We have been advised to have an eye surgery as well to correct Jonathan's
strabismus. The opthamologist had said she would like to wait
until most of
his forehead advancements were done so that they would not interfere
with the
results from the eye surgery. However, the cranial surgeon said
we should go
ahead and have it done now. They have never said anything about
a tightness
of muscle though. We have decided to finish the hand surgeries
(2 to go) and
then work on the eyes. His last forehead advancement has really
stayed quite
nicely even though I do see some upward growth again. We were
advised to
patch Jonathan's strong eye but have not had success in that area so
we were
given a prescription of drops to insert twice weekly to blur the vision
of the
good eye and thus force the vision in the bad eye. I have not
started them
yet but plan to next month. Please keep us posted.
Thanks.
Brenda
Houston
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Date: Mon, 26 Oct 1998
21:18:06 EST
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From: GSieb91515@AOL.COM
Subject: Re: surgery cancelled
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Denise,
Sorry to hear Daryl's surgery is cancelled. We were looking at
a similar
schedule and said forget in December. However, they were
able to get us in
the end of Nov. Now we just have to stay healthy so that it's
not cancelled
also.
I know what you mean about slowing down your life. This is my
last official
week at work. I have decided to work independently from my home
and my boss
has agreed to let me use her facilities/resources. So basically
I will
continue to do my thing without having to punch a clock and can concentrate
more on the family first and work second. I am so excited and
scared too.
Our insurance is changing so we will have to foot more of the bill
for
surgeries next year but I know that God will see us through.
Hang in there and let us know when the surgery is rescheduled.
Best wishes,
Brenda
Houston
=========================================================================
Date: Mon, 26 Oct 1998
21:29:44 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: HELP!!!!
In-Reply-To: <001501be014b$3f972e80$e16fd6d1@timcarol>
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> >On another note.....I was just curious...why do some
of the kids have the
> >shunts placed so late....after the first year or later? What was
it that
> >changed that made the doctors decide that they needed one then as
opposed
> to >when they were first born.
For some of the kids, it may also be a matter of the sutures
that
weren't fused are now -- making the increased pressure more obvious.
Also, some may have been managed medically (with lower pressure
hydrocephalus, medication sometimes can be used to avoid or postpone
shunt placement). For a few, the shunt may not have become
necessary as a result of complications of one of the earlier
surgeries.
Judy
Judy Gibson
jgibson2@erols.com
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Date: Mon, 26 Oct 1998
21:33:57 EST
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From: GSieb91515@AOL.COM
Subject: Re: HAND Questions. Rich &
Karen Hartley
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Rich and Karen,
How do you know that Andrew will have 4 fingers before they actually
do the
surgery? Jonathan's three middle fingers were all fused from
the tips to the
middle joint. Our surgeon here in Houston said from day 1 that
he will be
able to separate them all and hopefully there would be enough nerves,
etc. to
keep them all functional. So far he has been right on and we
are praying the
remaining 2 will go the same way.
I have often thought about how I could be available with info. to parents
as
soon as Apert babies are born. I must say though that Teeter's
Page and
Christine's newsletters were right there for us and without them we
would have
been lost. I know that not everyone has a computer to access
this information
so a contact point would be necessary at each hospital. Once
Jonathan is
through most of his surgeries and is a little older I hope to devote
some time
to this mission.
I just realized that Andrew has already had his surgery. We hope
that all
went well and he is recovering nicely.
Brenda Siebert
Houston
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Date: Tue, 27 Oct 1998
21:20:38 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: HELP!!!!
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Hi Robin
Amy had rosebuds - no separation - at birth. No splints or therapies used. Our surgeon left all recovery activities up to Amy. The only thing it was recommended we do once the skin was healed was to massage Vit.E cream in to keep the skin pliable. He works on minimal intervention - even now he offers surgery to tidy up her hands but says it won't help her function so probably isn't worth doing at this stage.
Regards
Ann
NZ
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Date: Tue, 27 Oct 1998
10:49:49 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: A BJ update
MIME-Version: 1.0
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Hi everyone. Here's some news from Marjorie we hoped would never
come.
I've put this together from several emails received yesterday and today.
BJ, we never stopped thinking about you.
...BJ died in his sleep on September 15th. I am glad that he is finally
at peace but we do miss him
terribly. In time I will try to send you some pictures for a different
page...
...I would appreciate you informing the listserv. The Listseve has been
a great
support in the past year with all of BJ's problems. Give me a little
time and
I will be back I just need to get the rest of us through this time
first. If
it isn't too much work you might keep the pictures on file we can add
those to
the ones I will send you...
...I just don't know what I want to do right now and would like to
discuss this with David and the
kids. I want to apologize for waiting so long to inform everyone but
I
just
sort of lost it after BJ died and I am just now even trying to reconnect
with
reality...
...I want you to know he didn't suffer at the end in fact his last three
days
were his most aware and alert days in close to a year. He was aware
of
what
was happening and he didn't seem to suffer much...
...I have stared at a blank email for an hour now hoping the right words
would
come but they haven't yet. I would like to start by thanking each of
you
for
the support and comrade that you have shown Me and my family through
the
past
year. Sometimes just being able to vent was all that I could do to
keep
my
sanity. It was good to know that I could come here and just let it
all
go for
a few minutes.
Marjorie
=========================================================================
Date: Tue, 27 Oct 1998
07:55:04 -0800
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From: Scott Pengelly
<scottp@EUGENE.COM>
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
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Good morning, Marjorie, David, Jacob, Joshua and Katie:
I have just read the words I
did not think would appear.
I am so sorry to learn of
BJ's death. I am deeply
moved by your struggle and
your wonderful spirit.
Please accept my prayers.
I am with you.
All the best,
Scott
=========================================================================
Date: Tue, 27 Oct 1998
12:09:15 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: message from Liz
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Hey everyone!
Sorry I haven't talked to any of you since my last email! I am in the
process of trying to respond to many of you that responded to me, be
patient I
will get back to you soon. I was sorry to hear about BJ and send my
thoughts
and prayers to BJ's family and friends. I am also looking through my
medical
records so that I can comment on the hand sugeries and I want to let
everyone
know I did not have to have a shunt I guess I was lucky. Anyways will
write
again soon!
Liz
P.S. I am also collecting photos of myself and preparing my short story
so
that DOn can create a page for me, soon you'll be able to see it.
=========================================================================
Date: Tue, 27 Oct 1998
16:30:57 -0500
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From: foster <foster@ICONTECH.COM>
Subject: BJ
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Harmon Family,
We are so sorry to hear that BJ has passed. I can only say that our
prayers
have always encluded BJ and all of your family. Our prayers will remain
with
all of your family and we will pray that the pleasure that he has brought
you through the years will some how help to ease the pain you must
be
feeling without him. He was a brave boy and he was lucky to have had
such a
wonderful family to take care of him. May God bless all of you.
The Fosters(PA)
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Date: Tue, 27 Oct 1998
17:51:33 -0500
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From: lmaclean@NETCOM.CA
Subject: Help!
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Dear Robin,
Amy wore a splint after her thumbs were seperated and is presently
wearing another one as she had the web space increased on her right
hand this spring. We were told that the splint is to get the
maintain
the web space and to get the most web space as possible. I gather
that it
helps ensure the elasticity in the skin - as the area heals it naturally
wants to pull back together.
With Amy's initial thumb surgery we put the splints on at night and
nap
time. This time we have been keeping the splint on as much as
possible.
I am just now decreasing to bedtime only and it has been four months.
The goal is to have her splint free around Christmas.
The splint itself is hard to explain. It's molded so that her
fingers are
together and her thumb is seperate in an extended position. It
is made
out of a lightweight material ( a type of plastic) that has little
perforations in it. Her hand was measured, a one piece pattern made,
this "stuff" was cut and then softened in a hot water bath to make it pliable.
It was then formed around her hand. It velcros on across the back
of her hand. It sits across the base of her fingers in the palm so
she still has good use of her hand. We have had her in to have it remolded
and they just warm it up in the hot water bath so that it is pliable again.
It looks almost like a stiff mitten with the fingers and thumb tip visible.
Amy's splint was made at the local rehabilitation hospital.
Hope I haven't confused you too much!
Leanne
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Date: Tue, 27 Oct 1998
17:10:49 -0600
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From: jamerman@UTI.COM
Subject: misc.
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Hi,
I just tried to call you but you did not answer. I am really starting
to
get paranoid.
Last night I pulled up Teeter's page and realized that BJ's page had
been
pulled. Silly me. I just thought that Don was just updating
it. DAH!
the other reason I called was to see if you had decided when you were
going
from the dates that I gave you. Once you decide, I will
make definite
plans from those dates, making sure that I am there when you are but
either
arriving sooner or staying later.
How is Don's mouth feeling? Still tender?
How is he doing on the updates? He has really taken on a job
with that,
but again the rewards are truly a pleasure.
Beth called me Sunday, I guess she has sent Nick a Rugrat's tee shirt
in
the mail and was wondering if I had got it yet. Still waiting.
Did I tell you about my new toy? My lighthouse? If not, I bought
a 6 foot
lighthouse with the revolving lightkit. It is now wired and is
just so
cool. I have a sensor on it so it comes on automatically at dark
and goes
off in the a.m.
Better go now, we are having a storm.
Judy
=========================================================================
Date: Tue, 27 Oct 1998
17:55:13 -0600
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From: jamerman@UTI.COM
Subject: Sorry
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I just noticed that I sent a private letter to the listserv and I am
so
sorry. And Totally embarrassed.
=========================================================================
Date: Wed, 28 Oct 1998
19:40:24 +1100
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From: Jarol <carolh@HOTKEY.NET.AU>
Subject: Fw:
Re: Febrile Convulsions
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Hi Everyone,
Well what a couple of weeks its been. Firstly I'd like to thank
everyone
who responded during the week Ashleigh had her febrile convulsions
that
weekend I went into hospital for the weekend to have a rest and just
relax
before the birth of my baby.
Its still going to take some time but hopefully Ill get there.
Thanks for being there
Carol
=========================================================================
Date: Wed, 28 Oct 1998
19:44:45 +1100
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From: Jarol <carolh@HOTKEY.NET.AU>
Subject: Fw:
BIRTH ANNOUNCEMENT
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AARON JAMES HAS ARRIVED SAFE AND VERY HEALTHY INTO THIS WORLD.
HE WAS BORN
AT 9.40PM LAST THURSDAY NIGHT 22/10/98, AFTER A 4 1/2 HOUR LABOUR.
WHAT A BEAUTIFUL LITTLE BROTHER FOR ASHLEIGH AND JASON.
=========================================================================
Date: Wed, 28 Oct 1998
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From: Yonstein@AOL.COM
Subject: Re: Fw:
BIRTH ANNOUNCEMENT
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Congratulations!!!What wonderful news. Hope all is well and you
can get some
rest.
Janine
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Date: Wed, 28 Oct 1998
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From: Yonstein@AOL.COM
Subject: Re: A BJ update
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To the Harmon Famly:
We are so very sorry to hear the news about BJ. What a strong,
wonderful
child. You all have had such strength during this past year.
Just know that
our thoughts and prayers will continue with you during this very difficult
time.
Best wishes,
Janine Krebs and family
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Date: Wed, 28 Oct 1998
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From: Yonstein@AOL.COM
Subject: Re: Help! Dr. Upton
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Hello all:
I know that some of you have used Dr. Upton. We are looking for
his telephone
number if anyone could give us that. Thanks in advance.
Janine
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Date: Wed, 28 Oct 1998
09:39:16 EST
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From: Nodrmat26@AOL.COM
Subject: working at home
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Brenda~
I am very interested in working from my home so that I can stay home
with my
girls during these critical years. I noticed you mentioned working
from your
home and was hoping you might have some advice for me. Everything
so far that
I've looked into was either a fraud or it costs too much to begin.
Any help
would be appreciated.
Thanks,
Christina
San Antonio
=========================================================================
Date: Wed, 28 Oct 1998
09:42:42 EST
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From: Nodrmat26@AOL.COM
Subject: Re: HAND Questions. Rich &
Karen Hartley
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Just wanted to add my few cents about Zoey's hands an the doctors predicting
only four fingers on each hand. She had the bones, but not the
nerves and
arteries and veins and stuff. What fingers they could give her,
they wanted
her to be able to use them to the best of her ability. If they
had tried for
5 fingers, she would have had a finger that would just lay there interfering
with the ones that had "all the parts". I'm happy with what they've
done and
once they're done her right hand, I think that people will stop staring
so
much, because you'd really have to look hard at her hand to tell there's
something "wrong" with them.
Christina
San Antonio
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Date: Wed, 28 Oct 1998
09:48:54 EST
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From: Nodrmat26@AOL.COM
Subject: Re: Fw:
BIRTH ANNOUNCEMENT
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Congratulations Carol and Family!!!
I have a younger brother named Aaron James, he'll be tickled that a
new little
baby has his same name. Again, congratulations!
Christina
San Antonio
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Date: Wed, 28 Oct 1998
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From: Nodrmat26@AOL.COM
Subject: Re: A BJ update
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Dear Harmon Family~
I just wanted you to know that I was saddened by your news of BJ passing.
I'm
so sorry that we never got to meet BJ and his family. You are
in my thoughts
and prayers. Any parent can imagine what you all must be going
through. Take
care of eachother.
In deepest sympathy,
Christina, Zoey & Tia
SanAntonio
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Date: Wed, 28 Oct 1998
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From: ETolson643@AOL.COM
Subject: Re: Help! Dr. Upton
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Janine
I THINK that this is Dr. Joseph Upton's current address... 830 Boyston
Street,
Boston, MA phone # 617-739-1972. If that isn't correct,
try Children's main
number: 617-355-6000 or try the plastic surgery clinic:
617-355-7641. Good
luck.
Beth Tolson
Boston
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Date: Wed, 28 Oct 1998
17:58:59 EST
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From: ETolson643@AOL.COM
Subject: Re: Help! Dr. Upton
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Janine
Oops! Dr. Upton address listed is in Brookline and the zip is
02147.
Beth
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Date: Wed, 28 Oct 1998
18:00:30 -0800
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: gene info
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I know this has been mentioned before..but I can't find it. Could
someone give me info about what gene is responsible for aperts..and
or
any articles which discuss this? thanks so much
=========================================================================
Date: Wed, 28 Oct 1998
18:54:13 EST
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From: BBarn60368@AOL.COM
Subject: Re: A BJ update
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Dear Harmon Family:
How difficult a time this must be for you. I hope you can find
comfort in the
fact that you are so strongly in all of our minds, our hearts, and
our
prayers. Much love to you and God bless.
The Barnetts in Orlando
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Date: Wed, 28 Oct 1998
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From: ETolson643@AOL.COM
Subject: Re: BJ
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Marjorie and David and Family:
I was so sorry to hear of BJ's passing. I can't possible imagine
how
difficult it must be for you. I am sure that the love of your
friends and
family will help you through this sad time. I would like to share
with you a
poem I wrote for my brother, Billy, who was buried on September 14th.
He died
unexpectedly on September 9th, far too young....He was Tim's buddy;
living
just a few doors down from us and being single, he spent a great deal
of time
with our family and had a special place in his heart for Tim.
In fact, Timmy
took his name for Confirmation just this passed spring. Our pastor
read the
poem at Bill's funeral. I think it speaks about anyone who dies young.....My
thoughts and prayers are with you.
Beth Tolson
For Billy
In the course of a season flowers grow and bloom and, in time,
Wither and die; falling gently upon the earth beneath.
But sometimes a storm arises, bringing merciless winds and heavy rain,
Pummeling and ravaging the flowers.
The most fragile of the flowers fall from the stem;
Well before their appointed time,
Before the season is over,
Before their beauty is spent;
Victims of the ferocity of a storm over which they have no control.
Why some flowers withstand the storm....
And some do not.... is a mystery.
And it seems that even the most tender care and attention
Does not make those fragile flowers strong enough
To stop the premature fall to the earth.
Those that remain continue on, growing and blooming,
Colors varying from golden yellow and lapis blue to pristine white.
But there is always an empty space on the vine,
A yearning for the color and splendor that might have been;
A vacant reminder of the fallen buds.
Beth
September 10, 1998
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Date: Wed, 28 Oct 1998
19:03:46 EST
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From: BBarn60368@AOL.COM
Subject: Re: Mid face advancement
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Dear all:
I have a question. I took Shirley to her plastic surgeon and
to her dentist
for her annual visits and my question is: When did your kids go through
their
first mid-face advancement and why at that time? I've heard of
kids going
through them at 5,6, and so on. The dentist says wait until she
is 16, so we
won't interfere with her growth points with the scarring. The
plastic surgeon
says 7,8,or 9. The neurosurgeon says about 7. Who actually
does the surgery?
What are the reasons for doing the first one at 5 or 6? It seems
they are
usually back in there over and over if started early. Any help
on this
subject would be appreciated.
Thanks in advance,
Alice in Orlando
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Date: Wed, 28 Oct 1998
19:07:19 EST
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From: ETolson643@AOL.COM
Subject: Re: Mid face advancement
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Alice
Tim had his midface at 14. He is 17 now. The team included
a plastic
surgeon, oral surgeon, neurosurgeon, and many others....the team at
Children's
(Boston) is generally waiting until the teen years because they found
that
when they did it earlier it had to be repeated.
Beth Tolson
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Date: Wed, 28 Oct 1998
17:11:24 -00800
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Date: Wed, 28 Oct 1998
20:31:52 -0500
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From: foster <foster@ICONTECH.COM>
Subject: Birth announcement
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Carol,
Congradulations on the birth of little Aaron James. What a wonderful
time
this must be for you and your family. Glad to hear that you are feeling
better . Take it one day at a time and enjoy this time with your family.
Karen
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Date: Wed, 28 Oct 1998
20:31:53 -0500
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From: foster <foster@ICONTECH.COM>
Subject: What next?
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I guess we are a no go again with the surgery on the 4th. I wrote last
week
about Billy's visit to the ent and the talk about adnoid removal and
possibly a trache.Well on Friday his ears started to drain and by Sunday
there was even some blood leaking out. I took him to his doctor and
she said
they were very badly infected. I don't know how they got so bad when
on
Monday the ent said they looked good. Anyway the doctor said this was
all
happening because of this cold and because of the fact that his nose
is
blocked so much that it was draining out of his ears.We decided to
just
forget all surgeries until after the holidays.The doctor agrees that
Billy
has been so sick for so long that he needs this time to heal before
any more
surgery.
She said we will not even think of a trache until all else fails. We
will
try some other things first to see if this can be avoided. Tonight
we are
doing a sleep study at home to see just what is going on and hopefully
this
will help us. We talked to the surgeon about how maybe we should
think
about mid-face being done instead of trache and he said no. He said
not
until Billy is 6 or 7 years old. Why would a trache be better than
a
mid-face? I understand that it would have to be done again but is a
trache
better? I am interested in any comments even negative ones. So, thats
where
things stand right now.
Karen(PA)
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Date: Wed, 28 Oct 1998
22:16:16 EST
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From: Yonstein@AOL.COM
Subject: Re: Poem
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Dear Beth
First, let me express my sympathy to you and your family on the loss
of your
brother. What a beautiful poem you wrote. It says it beautifully.
Janine
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Date: Wed, 28 Oct 1998
22:28:16 EST
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From: Nodrmat26@AOL.COM
Subject: Re: What next?
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Karen~
Don't know if this'll help, but I was told that Zoey would have needed
a trach
temporarily anyway to do her mid-face advancement. And hers will
be done when
she's three. Zoey has a trach and it's very frustrating and I'll
always
wonder if we could have avoided it...atleast so soon (3 wks old).
Christina
San Antonio
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Date: Wed, 28 Oct 1998
22:28:38 EST
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From: Yonstein@AOL.COM
Subject: Re: What next?
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Hey Karen:
Sorry to hear about all the problems you guys are going through.
I am sending
thoughts and prayers to you that Billy gets well soon. This a
tough time and
tough decisions to be made. Wish I could help, but I have little
or no
knowledge as far as the trache issue is concerned.
Take care,
Janine