Dear Marjorie,
We are always Thinking of
you and wishing BJ a quick return to the very
best of health.
The Ize Family.
=========================================================================
Date: Sun, 15 Feb 1998
09:59:13 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: recognition of differences
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
I am wondering, on average, at what age children have begun to notice
the physical differences that they have? Our daughter if 5 and a half
and has really taken notice of the differences in fingers and toes.
=========================================================================
Date: Sun, 15 Feb 1998
10:20:31 -0800
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: Robyn Johnston
<robyn@ORDATA.COM>
Subject: gagging question
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi everyone,
I have got a question that I hope maybe someone has some insight into...
Recently - between 2 and 3 weeks ago, Brenna has started gagging on
everything. We have had to stop using bibs because she just gaggs
uncontrollably until she has herself in tears. It even happens
when we
change her shirts. When we pull anything over her head and neck,
the
sensation of something touching her neck causes her to choke.
Also when
she gets upset, and cries - not very often - usually only when she
gets
hurt, she starts to gagg in the worst way. It starts immediately
as she
starts to cry. The gagging is a little more invoved when she
is crying.
When we went to the ENT last week, he said that her tonsils are starting
to
grow, and that we will have to have her tonsils and adenoids removed
in the
near future. He wants to wait though until they absolutely have
to come
out. I am wondering if there is a conection??? I asked
him about it, but
he had never had this association before.
Anyways, I am baffled!!! ;-/ Brenna woke up real early this
morning (from
an apnea spell, or tummy ache or bad dream???) crying real hard and
gagging
for almost 20 minutes until I got her to settle down again. She
never
actually throws up anything, but I am beginning to get concerned.
She does
have some sleep apnea that seems to be getting worst lately.
I probably
wouldn't be as concerned if this gagging were "normal" behavior for
her.
But, it just started up a few weeks ago???
Has anyone had, or heard of other children who do this? Any insight
or
opinions would be really appreciated!!!
Hope you all had a nice Valentines day- hopefully with lots of Chocolate!!!!
Hugs, Robyn Jonhston
=========================================================================
Date: Sun, 15 Feb 1998
11:39:41 -0800
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: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Good wishes for the Harmons:
Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Good morning, all:
Marjorie, David, BJ, Joshual,Jacob and Katie:
You remain in my prayers and in my heart. Please rest
when you can.
All the best,
Love, Scott
=========================================================================
Date: Sun, 15 Feb 1998
16:32:34 EST
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: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: gagging question
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Robyn,
My son Andrew has just started the same thing whenever he eats or drinks
anything. He will even gag when he is drinking from his bottle.
It isn't
just juice liquid, but milk as well. Its not a choking thing,
its an
exaggerated cough or gag. Our hand and foot surgeon, said that
sleep apnea is
very common in Apert. Also, our craniofacial surgeon said that
it is very
typical that Apert children need to have their tonsils and adenoids
removed.
He said that it is usually done when the child is around three years
old. Our
ENT has told us that he will also wait until necessary to do it, but
I feel
that it is time. I will be calling his ENT on Monday to discuss
this and make
an app.
Now I have a question. I was reading Dr. Upton's book and it says
that Reflux
is very rare in Apert. Is this true? Does anyone out there
experience Reflux
with their children or has an older Apert adult out there still experience
this? I am real curious, because the book says that the spitting
up and
coughing are due to the inflamed tonsils and adenoids. Does anyone
out there
have any information to share with me?
I hope that BJ and Jordon are doing well and I am looking forward to
their
updates. Both are in our prayers.
Love to all,
Lynn
=========================================================================
Date: Sun, 15 Feb 1998
17:21:52 EST
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: Janine Krebs
<Yonstein@AOL.COM>
Subject: Best Wishes
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Dear Harmon family:
I just wanted to wish you all well and let you know you are in our prayers.
We're hoping that BJ improves daily and is not in too much pain.
Thanks for the update.
Jenn, Joe and Jordan:
Hope Jordan is recovering nicely from his surgery, and Mom and Dad, too.
Anyone else having surgery best wishes to you also.
Janine Krebs
=========================================================================
Date: Sun, 15 Feb 1998
20:46:48 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: foster <foster@ICONTECH.COM>
Subject: gagging question
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Lynn,
I have some knowledge of reflux. When Billy was two months old and had
his
bowel repaired the doctors put in a g tube for feeding and insisted
that
they do a Nissen fundoplication, which is basically rapping them stomache
around the esophagus to prevent reflux. We did not want them to do
this but
were told that reflux is sometimes a problem with aperts. They felt
that
this whould help him from having a problem gaining weight. WE agreed
and let
them do it. Because our four year old who was three months premature
had
relux for the first 10 month of her life and it was very un plesant
and she
did gain weight but not as fast as she could have. We felt this was
a good
move.It has proven to be a good move although he can eat all of his
food by
mouth and not have a problem but when given any liquid by his tube
once he
takes 3 1/2 ozs. he will start to gag. So we have to wait and give
him
atleast 45 minutes be fore he can tolerate any more. When he starts
to gag
we hold him upright and rub his back and that seems to help. The doctor
do
not seemed concerned and is weight gain has been pretty good so far.
There are medicines that the doctor can give for reflux and sometimes
that
helps but ussually the child will out grow relux in most cases by the
time
they reach 1 year old. Holding them upright ussually work best if it
is just
relux. However if the problem is the tonsils I dont think that
is reflux.
We are sending our prayers to BJ and his wonderful family and pray he
will
be stronger everyday.
Also thinking of Blake and Jordon and hopping their recovery is going
well.
Billy is off to get his sitches out tomorrow. I have to say he is a
much
happier boy these days and doing better everyday.
Karen
=========================================================================
Date: Sun, 15 Feb 1998
19:50:24 -0800
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: Laurie Ann Bailey
<jkb@ELPASO.NET>
Subject: Re: recognition of differences
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
My name is Laurie Bailey. My son, Jacob, is 21 months old and is
currently undergoing his finger separations. He has already taken an
interest in how his hands are different from mommy's and daddy's.
Laurie Bailey
jkb@elpaso.net
=========================================================================
Date: Sun, 15 Feb 1998
21:23:16 EST
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: "<George Siebert>"
<GSieb91515@AOL.COM>
Subject: Re: Response to Brenda
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Sonya,
So glad to hear how well everything went for you guys. I hope
we have as good
of luck. We did find out that the reason George's blood didn't
work was
because his was CVS positive. Which means he had the antibodies
for
Chickenpox, etc. Because Jonathan was so young with his first
cranial surgery
the order was for CVS negative. However, they didn't do any lab
work before
surgery which I consistently asked about since I've had a number of
surgeries
myself and have always had preop stuff. They couldn't get a vein
the morning
of surgery on Jonathan so they decided to wait until he was under to
do the
blood match. We had no idea there would be a problem with George's
blood not
working. It was never mentioned as a potential possibility.
Anyway, I don't know anything about the neuro surgeon that Dr. Salyer
works
with. Have you heard anything about him since you selected the
other NS. We
love our NS here in Houston and hate the thought of using someone else.
He
actually left his practice here for a year to go study with the guys
in Dallas
awhile back. I feel I should call him and let him know what we
are going to
do and see what his reaction is to this other neurosugeon.
Was Blake's surgery at Columbia? We had a bad experience at the
Columbia
hospital here when Jonathan was born. I hope they're not all
run the same
way. I think Columbia owns just about all the hospitals now.
Did you guys
stay in a hotel or camp out at the hospital? This may sound silly,
but was
there a shower in Blake's room when he was moved from ICU? The
last time
Jonathan was at Texas Children's I stayed with him the entire time
and it was
a battle trying to find an unoccupied shower in the hospital.
I think they
had a total of 3. It sounds like everything was positive for
you all. I'm so
glad. The surgery is scheduled for March 24th but we will make
a trip up
there before with new CT scans and a general visit. This will
have to be in
between his hand surgery on 2/23 and the healing. Also
I think George and a
friend are going to fly to Dallas and donate within the 2 week timeframe
before surgery. It's going to be a hectic next few weeks.
Maybe we will be
in Dallas at the same time. Let me know when Blake's followup
appt. is.
Thanks for the info.
Continued best wishes for Blake's full recovery,
Brenda
Houston
=========================================================================
Date: Sun, 15 Feb 1998
21:08:01 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: An Update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dear Marjorie: you, BJ and your family have proven to have a great
strength and lots of patience! You are our inspiration! Keep up!! (I
know it is easier to say than to do). You are in our prays.
To all the list friends: Just to share a little good new,
the American
Consulate gave us the Visa... so hopefully we will be travelling to
PA
by this weekend or the next.
I will let you know the exact day of our travelling,
Best regards,
Elizabeth
=========================================================================
Date: Mon, 16 Feb 1998
08:24:54 -0800
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: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Good luck, Elizabeth: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Good morning all:
Elizabeth de Silva, you and
your family are in
my thoughts and prayers as you prepare for your journey.
All the best,
love, Scott
=========================================================================
Date: Mon, 16 Feb 1998
15:21:05 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Trip to PA
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Elizabeth, Best wishes for your trip here! I'm sure you
have a lot to do
right now to get ready! How long do you plan to be here?
As I said
before, we only live a very short distance from where you'll be.
Where
exactly will you be staying? Let us know if you know the name
of the place
or have a phone # so that we can reach you. Our # is (717)524-0865
if
you'd like to call us when you get a chance. We'd love to be
able to meet
you! Take care! Kelly
=========================================================================
Date: Mon, 16 Feb 1998
15:47:03 EST
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: Gaylann Hicks
<Gaylann1@AOL.COM>
Subject: Response to Brenda
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hi Brenda, Hope your day is going well. Sonya has all three
boys home today
and working on a painting order. Glad I'm a grandmother!
I read your email to her. There are four neurosurgeon at the
clinic and not
sure which one works with Dr. Salyer. Blake was down there for
two days of
preop: specialists, sleep study, blood work up, MRI, etc.
Sonya recommends
you call Angie Buckmeyer, clinic coordinator, @972-566-6760 or 1-800-227-2424.
(The 800 number is hard to reach.) Angie worked on the floor
for several
years and has good experience.
Sonya and family stayed at the Ronald McDonald House 214-631-7354.
They found
this very satisfactory. When we were there we stayed at the AmeriSuites
since
we had so many people there. There is a tub/shower available
in the room and
another shower on the floor. Don't think you will have a problem.
We were as
pleased with Medical City Dallas as any other hospital, I guess.
Personally
I'm not crazy about any of them. We really can't complain.
Have you met with a team? Blake's follow-up is in April.
If you would like
Sonya to call you, let us know your phone number and she will be glad
to do
so.
Good Luck
Gaylann
=========================================================================
Date: Mon, 16 Feb 1998
15:50:24 EST
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: Gaylann Hicks
<Gaylann1@AOL.COM>
Subject: To Resa and Mark
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Dear Resa and Mark,
Hope you have been reading the messages back and forth from Sonya and
Brenda.
There is info about Dallas that you will probably be interested.
Let us know
if we can be of further help.
Take Care,
Gaylann
=========================================================================
Date: Mon, 16 Feb 1998
05:28:22 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: Trip to PA
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dear Kelly:
> Elizabeth, Best wishes for your trip here!
Thank you! I do not know yet when our trip is going to be or where
are
we going to stay. I will have to phone tomorrow Dr. Perlmutter
in order
to let him know that we are all set, so he can let us know when to
go
and where in PA.
We will be so happy to meet you and have some friendship support over
there. If I know in advance phone numbers I will let you know,
if I do
not get them in advance I will call you from there. Thank you
again for
your support.
Is it still very cold there?
Warm regards,
Elizabeth
=========================================================================
Date: Mon, 16 Feb 1998
18:45:01 +0000
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: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello!
I have been reading about parents donating blood prior to your children's
surgeries. I donate blood on a regular basis as my "Good Samaritan"
gesture. When I went to donate today, I asked the nurse if I could
donate
on behalf of one of you. She told me that if your local blood
center
charges for the blood you might receive, it would benefit you for me
to
do so. You would not be charged for that pint. The blood
center here
would send a credit voucher to your local center. So, what I
am getting
at is if your child is scheduled to have surgery and you know that
your
local blood center charges for the pints of blood, NOT the services
the
hospital charges for to receive the blood, I cannot alleviate those
bills-sorry! Let me know and the next time I go, in April,
I will let
them know it's for you and ask them to send a credit voucher.
Joanne in Ohio
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date: Mon, 16 Feb 1998
19:15:59 +0000
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: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Safe Trip!
Elizabeth!
I had been wondering about you and your daughter! I hope your
trip to
the states is a safe one and that your daughter's surgery goes well.
You
will be in my prayers. I don't know what the weather is like
in
Pennsylvania, but it has been unseasonably warm this winter.
30-40
degrees.
The same goes to BJ, Jordan, Blake and Billy. You are all constantly
prayed for!
The job search saga continues. God is picking this time to teach
me many
things (or perhaps I am picking this time to learn many things from
Him?)
I am at peace.
Warm wishes to all
Joanne, in Ohio
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date: Mon, 16 Feb 1998
23:14:43 GMT
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: John Brumfitt
<john@BRUMFITT.DEMON.CO.UK>
Subject: New Subscribers,England
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 8bit
First of all, we would like to thank Cath and Don Sears for all their
efforts re: Teeters Page and everything they have done to inform
Aperts' families that they are not alone and support is at hand.
As
new members to the Listserve, we would like to introduce ourselves
-
Angela and John Brumfitt from Rainhill near Liverpool, England.
We
have four children, Anna 18, John 11, James 9 and Helen 8.
James has Aperts syndrome. We have been following some of the
most
recent news from the members, with great interest, espesially that
of
B J Harmon, our thoughts and prayers go out to them all at this very
worrying time, ( may God bless them). We have followed the amount
and
types of surgery done in America, it seems to differ somewhat from
our
English system. James has had only one major surgery to the skull
and
the debate is on as to the best time to do something for his mid-face.
Our surgeons like to wait until children are 16, so the mid-face op.
possibly only needs to be done once and yet some of us as parents feel
the children would be better served cosmetically if a mid-face
correction was performed prior to the puberty years. Thus possibly
easing stresses from teasing and staring from other people.
James has had numerous amounts of surgery done to his hands and it
is
still ongoing. His hands were very severe, he has three fingers
and a
thumb on each hand.
We would like to thank Joanne in Ohio, for her lovely personal
thoughts and views of her life, which we would like to print in our
local newsletter for the Craniofacial Support Group, of which
I ,
Angela am on the Executive Committee, if Joanne consents.
We feel this is long enough for our opening letter, however I would
like to say that coincidentally, my maiden name is Harmon and my mum's
christian name was Marjorie .
Best Wishes to all - Angela, John and family.
=========================================================================
Date: Mon, 16 Feb 1998
19:42:24 EST
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: AOL User <MHTeach102@AOL.COM>
Subject: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Wanted to drop a short note to let everyone know how we are doing. BJ's
condition is the same as last report. The dialysis they are using to
clean his
blood is doing about the same. He has a recurrent fever that the doctors
are
trying to stay on top of. They have done a good job of that. The doctors
have
changed the G-Tube and gone to more frequent but smaller feedings.
We are
hoping to eliminate some of the nausea and vomiting this way. BJ seems
to be
in a considerable amount of pain and the pain meds are not alway effective
in
controling it.
About the only good news is that BJ has been consious for several hours
at a
time. The doctors are wanting us to meet with the hospice team in the
morning
before we make anymore long term decisions.
JOANNE, as far as the blood goes for BJ our blood bank does not charge
for
Blood, This is a great thing as much blood as BJ has needed over the
past six
months. The fellow fire fighters and EMT's fDavid's station have been
more
than generous to donate bllod as often as possible. David and I have
also
given blood 3 times. I would like to encourage those that can to go
ahead and
give blood. I know that our blood bank has run very low on several
occasions.
Enough preaching from me. I again want to thank everyone for all they
have
done for our family. I will always pray for God to bless each of you.
Marjorie Harmon
=========================================================================
Date: Mon, 16 Feb 1998
21:02:52 -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: Kerri Hedinger
<khedinger@NS.GEMLINK.COM>
Subject: Re: New Subscribers,England
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Welcome to the Brumfitt Family!
I have three children, Tyler 9, Erin 8, and Devin 10 months. Devin
has
Aperts. I am sure that you are more experienced than I re: Aperts
but I
have found that just being connected to the ListServe is quite a relief.
To
know that their are more people out there who can answer your questions
(of
which we have many) from their experiences is a blessing. Good
Luck with
your upcoming hand surgeries and God Bless.
Kerri Hedinger
-----Original Message-----
From: John Brumfitt <john@BRUMFITT.DEMON.CO.UK>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Monday, February 16, 1998 3:31 PM
Subject: New Subscribers,England
>First of all, we would like to thank Cath and Don Sears for all their
>efforts re: Teeters Page and everything they have done to inform
>Aperts' families that they are not alone and support is at hand.
As
>new members to the Listserve, we would like to introduce ourselves
-
>Angela and John Brumfitt from Rainhill near Liverpool, England.
We
>have four children, Anna 18, John 11, James 9 and Helen 8.
>James has Aperts syndrome. We have been following some of the
most
>recent news from the members, with great interest, espesially that
of
>B J Harmon, our thoughts and prayers go out to them all at this very
>worrying time, ( may God bless them). We have followed the amount
and
>types of surgery done in America, it seems to differ somewhat from
our
>English system. James has had only one major surgery to the
skull and
>the debate is on as to the best time to do something for his mid-face.
>Our surgeons like to wait until children are 16, so the mid-face op.
>possibly only needs to be done once and yet some of us as parents
feel
>the children would be better served cosmetically if a mid-face
>correction was performed prior to the puberty years. Thus possibly
>easing stresses from teasing and staring from other people.
>James has had numerous amounts of surgery done to his hands and it
is
>still ongoing. His hands were very severe, he has three fingers
and a
>thumb on each hand.
>We would like to thank Joanne in Ohio, for her lovely personal
>thoughts and views of her life, which we would like to print in our
>local newsletter for the Craniofacial Support Group, of which
I ,
>Angela am on the Executive Committee, if Joanne consents.
>We feel this is long enough for our opening letter, however I would
>like to say that coincidentally, my maiden name is Harmon and my mum's
>christian name was Marjorie .
>Best Wishes to all - Angela, John and family.
>
=========================================================================
Date: Mon, 16 Feb 1998
21:23:47 EST
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: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Painful Teeth
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello,
It's me again with another question. I started brushing Andrew's
teeth many
months ago, but just recently (past week or two) Andrew has started
to cry
everytime I go to brush his teeth. I have read somewhere that
Apert teeth are
so jam packed in their mouths sometimes, that is can be painful to
brush their
teeth. Andrew's teeth have been coming in straight so far with
no signs of
lack of space. Has anyone else had this problem, or could it
just be that
Andrew is 18 months old and has quite a temper?
Marjorie,
I'm glad to hear that BJ is doing a little better than before.
He is a true
fighter and an inspiration to all Apert out there. We will keep
you in our
prayers and sending lots of love your way. Keep your chin up!
Lynn Thornquist
=========================================================================
Date: Mon, 16 Feb 1998
20:59:34 -0800
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: Laurie Ann Bailey
<jkb@ELPASO.NET>
Subject: Re: An Update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
This message is from Laurie Bailey. I have a 21 month old son with
Apert's. His name is Jacob. I have been keeping up with your story
for
some time now. I want to wish you all well and to remind you: any little
improvement is a huge step toward BJ getting well. I know you probably
already know that, but sometimes it's nice when others realize it too.
Laurie Bailey
El Paso, Illinois
jkb@elpaso.net
1-309-527-4496
=========================================================================
Date: Mon, 16 Feb 1998
22:39:49 +0000
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: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Hello England!
Angela, John and family,
First of all, Welcome to the Family! I hope you can find all of the
love,
acceptance and understanding I have found within these messages.
I hope
you are prepared to be blown away with all of the energy the people
on
this list will give you! It is astronomical!
YES! Please! If my words can be echoed in other forms, and
help someone
else, Please do so. I only ask that my name is attached and if
possible,
if I could receive a copy of the newsletter my information is printed
in?
I can send my personal snail mail to you. Thank you!
I want to send my thoughts to James. It is my hope that he knows
he is
not alone and that deep within himself is everything he needs to find
the
stamina to ignore the stares and teasing. I only wish I knew
this when I
was his age.
MARJORIE: I am glad to hear David's colleagues are helping you
out! You
are all in my prayers, especailly tomorrow morning. Hope all
goes well.
Joanne, in Ohio
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date: Tue, 17 Feb 1998
06:33:05 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Mark Smith <dsprado@PENN.COM>
Subject: just a note
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0075_01BD3B6D.E75F52E0"
This is a multi-part message in MIME format.
------=_NextPart_000_0075_01BD3B6D.E75F52E0
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Good Morning to all,
Just to let you all know that this will be a hectic
week for me =
(Mark). Michele and Kayla are in Pittsburgh all week for evaluations
=
and testing. Which, since I cant be there this time, makes me
a single =
dad again this week. No surgeries, just testing. Since
I used all of =
my vacation from work last year when Kayla had surgery I have to be
at =
work. My employer is allowing me to work around having
to be here for =
Megan. I usually start about 2-3 am. But this week it is
more like =
8-8:30. So I am not getting home till late, like last night was
9 pm.
So I still have one here at home to try and take
care of. I am =
amazed at all the stuff Michele does that I don't do around here.
I =
dont know where she finds all the time. So I am doing my best
to stay =
on track here. I apologize in advance if I dont mention everyone.
Elizabeth, the weather here this week is scheduled
for rain most of =
the time, off and on for the entire week. I hope that your trip
here is =
educational and profitable, please let us know when you will be here
and =
if possible a number where you can be reached at. Michele would
like to =
call you, and possibly meet you when she is down there.
The Harmons, keep your chin's up. Long
road with many turns as you =
weel know. Our prayers are with you.
Angela, John, Anna, John, James, and Helen,
welcome to the list. =
Spent a lot of time in Europe in the service, 9 1/2 years, but never
got =
over to England. Wish I would have traveled more. Oh well,
to late now =
I guess, again welcome to our Family.
Lynn, we have never had any problems with Kayla
brushing her teeth. =
She enjoyes it and loves to brush when her big sister is also.
Best of =
Luck.
Well my friends, it is time to get ready for work
again. I hope =
that I have not missed anyone in my ramblings. I know it is with
great =
jpride that we all talk about our little ones. May you all have
a great =
day and the sun be shining in your part of the world
Sincerely, Mark
------=_NextPart_000_0075_01BD3B6D.E75F52E0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000>Good Morning to all,</FONT></DIV>
<DIV><FONT color=3D#000000> Just
to let you all know =
that this=20
will be a hectic week for me (Mark). Michele and Kayla are
in =
Pittsburgh=20
all week for evaluations and testing. Which, since I cant
be there =
this=20
time, makes me a single dad again this week. No surgeries,
just=20
testing. Since I used all of my vacation from work last year
when =
Kayla=20
had surgery I have to be at work. My employer is allowing
me to =
work =20
around having to be here for Megan. I usually start about
2-3 =
am. =20
But this week it is more like 8-8:30. So I am not getting
home =
till late,=20
like last night was 9 pm.</FONT></DIV>
<DIV><FONT color=3D#000000> So
I still have one here =
at home to=20
try and take care of. I am amazed at all the stuff Michele
does =
that I=20
don't do around here. I dont know where she finds all the
=
time. So I=20
am doing my best to stay on track here. I apologize in advance
if =
I dont=20
mention everyone.</FONT></DIV>
<DIV><FONT color=3D#000000> Elizabeth,
the weather =
here this=20
week is scheduled for rain most of the time, off and on for the entire=20
week. I hope that your trip here is educational and profitable,
=
please let=20
us know when you will be here and if possible a number where you can
be =
reached=20
at. Michele would like to call you, and possibly meet you
when she =
is down=20
there.</FONT></DIV>
<DIV><FONT color=3D#000000> The
Harmons, keep =
your chin's=20
up. Long road with many turns as you weel know.
Our prayers =
are with=20
you.</FONT></DIV>
<DIV><FONT color=3D#000000> Angela,
John, Anna, John, =
James, and=20
Helen, welcome to the list. Spent a lot of time
in Europe in =
the=20
service, 9 1/2 years, but never got over to England. Wish
I would =
have=20
traveled more. Oh well, to late now I guess, again
welcome =
to our=20
Family.</FONT></DIV>
<DIV><FONT color=3D#000000> Lynn,
we have never had =
any problems=20
with Kayla brushing her teeth. She enjoyes it and loves to
brush =
when her=20
big sister is also. Best of Luck.</FONT></DIV>
<DIV><FONT color=3D#000000> Well
my friends, it is =
time to get=20
ready for work again. I hope that I have not missed anyone
in my=20
ramblings. I know it is with great jpride that we all talk
about =
our=20
little ones. May you all have a great day and the sun be
shining =
in your=20
part of the world</FONT></DIV>
<DIV><FONT color=3D#000000> Sincerely, =20
Mark</FONT></DIV></BODY></HTML>
------=_NextPart_000_0075_01BD3B6D.E75F52E0--
=========================================================================
Date: Mon, 16 Feb 1998
23:49:42 -0800
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: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Painful Teeth
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Lynn,
Brenna has always had a tough time with Brushing her teeth also.
It has
been a struggle for my husband and I to say the least. It is
one area we
try not to slack on though because we have been told by so many of
her Dr's
that good hygeine in the teeth is important. On the average,
these kiddo's
are going to have lots of other dental problems to worry about.
There are
nights where she is obviously in pain from teething. Her teeth,
which are
very crowded, have come in very sporadically and sometimes several
at a
time. We try to be gentler during those times. The top
teeth seem to be
more sensitive than the bottom ones. Basically we all brush our
teeth
together and try to have fun. We sing songs and goof off together
with the
toothbrushes and it seems to work. We also give her 2 toothbrushes
so she
can handle one while we actually brush. We have found one that
has softer
bristles, a long handle and a small head which works well. It
is made by
OralB and it has Elmo on it. I believe we got it at Toys R Us.
Even
though it is not the funnest thing in the world, Brenna doesn't seem
to
mind to much. It has become part of her nightly ritual.
Does Andrew have
a favorite toy or stuffed animal that could have it's teeth brushed
at the
same time?
Good luck, and don't give up! It has taken us many months and
lots of
persistance to get her in this routine.
Hugs, Robyn & the Plum
At 09:23 PM 2/16/98 EST, you wrote:
>Hello,
>
>It's me again with another question. I started brushing Andrew's
teeth many
>months ago, but just recently (past week or two) Andrew has started
to cry
>everytime I go to brush his teeth. I have read somewhere that
Apert teeth
are
>so jam packed in their mouths sometimes, that is can be painful to
brush
their
>teeth. Andrew's teeth have been coming in straight so far with
no signs of
>lack of space. Has anyone else had this problem, or could it
just be that
>Andrew is 18 months old and has quite a temper?
>
>
>Marjorie,
>
>I'm glad to hear that BJ is doing a little better than before.
He is a true
>fighter and an inspiration to all Apert out there. We will keep
you in our
>prayers and sending lots of love your way. Keep your chin up!
>
>Lynn Thornquist
>
=========================================================================
Date: Tue, 17 Feb 1998
09:09:06 EST
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: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello to everyone..no didn't get kidnapped in cyber space..although
I wish I
had at different points this past week..my abducters at least would
have let
me sleep!!!!!!
Well, Jordan is finally home..YEAH!!! Last night was our first night
back..I
really had to harrass our overprotective doctors to let us go. It was
at the
point where I think they were thinking about restraining orders against
me.
bUt they agreed if the labs were good we could go..and they were, so
we did!!
He has done wonderfully. Our biggest problem were his skewed labs. For
no
reason 2 days post op his PT and PTT (these have to do w/ bleeding
& clotting
time) skyrocketed, then returned to normal?????? then his White count
jumped,
w/ no real fever..then went back to normal????? Some odd events to
keep in
mind for his future surgeries. They extubated him on his first day
post-op,
and I was paronoid he would decide he was to lazy to breath..but he
didn't and
what a happy mom I was to see his sats at 100% all the time!!! That
will make
me sleep better a night, and get me off Joes back about Jordan not
"breathing
right"
He went to the floor on his 3rd day, monitor free, and has been doing
well. He
threw up a few times, which concerned us b/c it was after his 2nd day..and
it
was projectile big-time w/ everything he had eaten his enire
life going all
over me..hey..I neded a shower anyway...luckily the hospital always
has
clothing on hand, so I was given a complimentary pair of scrubs. Then
other
parents kept asking me where stuff was..like I worked there!! Anyway,
I think
his vomiting was a result of his tummy being tiny and Jordan eating
too much
too fast..and the last episode from a coughing fit..he caught a URI
there..LOVELY!!!
He looks ok..a little like ET..his temporal egion on the right side
is still
puffy, b/c he lays on that side so I think the swelling pooled a bit..his
eyes
have been open since day 2, but really opened day 3..to never shut
again might
I add. No, really last night was a good night..he went to sleep around
8 and
woke at 5..ate played a bit then slept for another 21/2 hrs..So I can't
complain b/c I passed out cold the moment his head hit the bed. He
got ZERO
sleep in the hospital..too much activity going on..so he was tired
as well.
His disposition is ok..today should be better b/c he had some rest.
He's
smiley and happy..but I must say I think he looks a little funny. All
the docs
and nurses keep telling me he will "grow into" his face. I know they
advanced
him 18 mm..which is a lot, but they didn't want to have to it again
in a few
yrs. But that smile is a great sight to see..I must say, I didn't think
I'd be
sitting here one week post-op w/ a happy baby!! They are all amazing
little
creatures. I'd still have my PAC pump going!!
Anyway..AS I ran out of the hospital before our doctors could change
their
mind, I was not given one important piece of ingo...when do the stiches
come
out?????? I am sure Jordan would appreciate me finding out !!!
Again, thank you all so much for your ongoing support and guidance
through all of this. I feel like I went into it w/ my eyes wide open,
thanks
to ya'll, and that really helped when we went to see him for the first
time,
and through the healing process.
Now its off to do laundry, pay bills, bathe neglected Alex (gee..has
he even
been outside to potty all week???) and try to get back to some level
of
normalacy.
Thanks again, and its good to be back
Jenn (Tampa/St. Pete)
=========================================================================
Date: Tue, 17 Feb 1998
09:42:43 EST
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: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: Painful Teeth
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Robyn,
Thank you for the information. Andrew has the same toothbrush,
but his has
cookie monster on it. As for a favorite stuffed animal or such,
he has never
bonded to anything. Unfortunately, he is not a self pacifier.
But I will try
getting another toothbrush for him to hold while I brush his teeth.
The top
teeth are also more sensitive than the bottom ones.
So far, Andrew's teeth are not crowded, although they do come in sporadically.
He got his top two teeth first, then the bottom two, then one on the
top left
and now finally one on the bottom right. I never know where they
are going to
come in next.
Thank you again for the info. Talk to you soon.
Lynn
=========================================================================
Date: Tue, 17 Feb 1998
09:48:53 EST
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: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Re: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jenn,
Glad to hear that Jordon is doing great. Andrew had a tough time
sleeping his
first nights home, but not as bad as in the hospital. I believ
that the
sutures should come out 10-14 days post-op. With Andrew's first
surgery he
had to have his in longer because of his necrosis, but his other surgeries,
the sutures were out sooner. I'm so glad your back with us and
it is really
nice to hear from you.
Give Jordon a big hug for me, and I'm happy everyone is home and well.
Lynn
=========================================================================
Date: Mon, 16 Feb 1998
12:55:16 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Christopher Kilner
<Christopher.Kilner@USPTO.GOV>
Subject: Re: gagging question and differences
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Our 3 year old daughter Ceci has had a slightly different gagging
problem. Since she was born, if she gets very upset while crying
she
gags and throws up. Also, small, hard foods like nuts and carrots
cause
her to gag sometimes, and of course, throw up. The doctors explained
it
as being related to the physical differences in Aperts that require
some
children to need feeding tubes. Ceci doesn't have sleep apnea or any
airway problems - just a very sensitive gag reflex.
Ceci seems to have realized that her hands are different, but rarely
focuses on it since she always seems to figure out a way to do what
she
wants with them. She understands that her hands are different
enough to
prevent her from wearing her brother's gloves ("my hands not fit -
I
need mittens") or putting her fingers into small holes, such as the
lollipop holes on her Valentine cards, like her brother does ("my
fingers too fat").
Chris Kilner, Alexandria VA
>
=========================================================================
Date: Tue, 17 Feb 1998
11:11:50 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Leanne Maclean
<lmaclean@NETCOM.CA>
Subject: Robin: noticing differences
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Hi Robin,
I have been meaning to say hello - thought it would be nice to hear
from
another Albertan! We live 45 minutes west of Edmonton and our
daughter,
Amy, is 2 1/2 months younger than Lindsay.
Amy started making comments on her hands just before she turned five.
She has three fingers and a thumb and can count consistently up to
39 but would skip numbers when she counted her fingers to get 10!
I think as her fifth birthday approached she wanted to show people
five fingers when they inquired how old she was going to be.
It was
on the way to the airport for her midface surgery that she finally
asked us why she only had four fingers! Since then she hasn't
really
dwelt on it - although she loves to play with our hands, opening them
up and folding the fingers shut in a way that she can't do herself.
Amy has never commented on her feet and hasn't really noticed others
when
they take a second or third look at her. She is in an incredible
early
intervention program and we are now making decisions regarding her
grade
one placement.
Hope to hear from you,
Leanne
=========================================================================
Date: Tue, 17 Feb 1998
10:37:28 -0600
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: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM>
Subject: Gagging
From: Horning Bob on Tue, Feb 17, 1998 12:10 PM
Subject: Gagging
To: Apert Listserver
When I started seeing the posts on gagging I breathed a sigh of relief....I don't remember that Krista had any trouble with that. But after a couple days it's finally struck me that she does have a little trouble swallowing certain foods (she's 10 now). It's not serious, and it helps for her to eat a bite of the difficult food, then a bite of another food, etc. to get it down. I wonder if it is a response to the same basic problem of small passages. The foods that are the worst are those that are tough or stringy. Some examples: steak, green beans (if they are a little over-ripe), carrots some times, apples with the skin left on (especially if the skin is a little tough), etc. I'm not sure if this is related to the gagging that many of you are reporting, but perhaps...
Bob Horning
=========================================================================
Date: Tue, 17 Feb 1998
12:08:13 EST
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: Jennifer Graham
<Jenngram@AOL.COM>
Subject: Re: gagging question and differences
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Well..since Jordans surgery he too has been gagging and throwing up
whenever
he gets upset. I don't know if this is permanent and new..or just because
he
has a cough and now when he gets upset..he REALLY gets upset, gags
between
coughing and crying and then the inevitable. Not too often though.
Strange,
when he was first born they tried to tell us he had no gag reflex..If
they
only saw him now!!
Jenn (Tampa/St. Pete)
=========================================================================
Date: Tue, 17 Feb 1998
13:12:49 EST
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: Lynn Thornquist
<Thornq@AOL.COM>
Subject: Gagging
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Just wanted to let everyone know that I have spoken to Andrew's ENT
and they
said that it sounds like he is going to need to have his tonsils and
adenoids
removed pretty soon. They also asked me if he was snoring, and
I told them
that its not horendous (sp.), but has progressivley gotten worse over
time. I
will be seeing Andrew's pediatrician today, to have Andrew's legs looked
at
because I believe he got an allergic reaction to the tape that had
been around
his legs from his toenail surgery. I intend to have his pediatrician
take a
look down his throat and see if Andrew's tonsils are enlarged.
I will let you
all know.
I guess we're not done for a year afterall. Isn't that always the way!!
Something we never mention is how wonderful how pediatricians are.
We talk
about all the other doctors and what great things they do and have
done for
our kids, but what about those wonderful pediatricians. If it
weren't for our
pediatrician, we may not have ever met Dr. Upton. He had an app.
for us to
see Dr. Upton two hours after Andrew was born, and we had a geneticist,
Dr.
Nowak, who works with Dr. Murray Feingold @ the National Birth Defects
Center,
in to see Andrew the morning after he was born. So hats off to
all those
wonderful pediatricians.
Talk to everyone later.
Lynn
(Holliston, MA)
=========================================================================
Date: Tue, 17 Feb 1998
13:27:52 +0000
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>
Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: Judy Gibson <jgibson2@EROLS.COM>
Subject: Re: Painful Teeth
In-Reply-To: <5924019f.34e8f4b5@aol.com>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7BIT
Lyn,
> Andrew's teeth have been coming in straight so far with no
signs of
> lack of space. Has anyone else had this problem, or could it
just be that
> Andrew is 18 months old and has quite a temper?
It's probably just the age. My 2.5 year old
sometimes gives me a
fit about brushing his teeth. Matthew doesn't have Apert syndrome.
One good thing about toddlers crying when you brush
their teeth
-- the mouth is generally wide open and it's easier to brush them.
Commenting on how much easier it is to brush with the mouth wide open
like that seems to calm Matthew. It also helps if I let him "brush"
his teeth before I brush them. Then I just "check" them with
the
toothbrush to get rid of the "cavity creeps". He usually opens
wide
once I mention the cavity creeps.
Judy
=========================================================================
Date: Mon, 16 Feb 1998
22:05:47 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: just a note
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Dear Mark, I think this is going to be a good experience.
I am sure
you will do a great job taking care of Megan.
I will let you now phone numbers (as soon as I get them) and date of
my
staying at PA. I hope I can meet you there.
Good luck as a "single father". : )
Elizabeth
=========================================================================
Date: Tue, 17 Feb 1998
11:38:18 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Re: Trip to PA
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Elizabeth, Glad to hear you'll be coming soon! Anything we can
do to help,
we will. It isn't very cold today, but usually in PA it is still
very cold
this time of year. Be prepared for weather in the 30's and we've
had a lot
of rain this year. Take care! Kelly
=========================================================================
Date: Tue, 17 Feb 1998
11:41:03 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Where do you live?
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Mark, It's hard to keep track of everyone sometimes. I know
that your
wife and daughter are in Pitt right now, but where do you all live?
We
just moved back to central PA and we're still trying to get our bearings
as
to who lives close to us now. Thanks in advance--I'm sure you
posted this
info once before but I couldn't find it when I looked back! Kelly
Younkin
and family
=========================================================================
Date: Tue, 17 Feb 1998
13:37:12 EST
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: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: Gagging
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Tim has had difficulty with certain foods and tends to stay away from
them by
choice. Steak is difficult for him, even when cut into small
pieces. I think
that the eating issues are caused by a variety of things including,
the
misalignment of his upper and lower teeth, his small mouth and arched
palate,
and his tendency to be a mouth breather . Tim also doesn't like
certain
consistencies; for example, he really dislikes jello and grapes.
Overall, he
has a great appetite and is a good sized sixteen year old; so, I don't
worry
too much anymore about his food intake. When he was a baby that
was a totally
different story. Feeding was a major issue (cleft palate and
all) and weight
gain during the first year was sporadic at best. So, to all of
you with
little ones, this too shall pass.
Beth Tolson
Boston
=========================================================================
Date: Tue, 17 Feb 1998
16:28:40 EST
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: Gaylann Hicks
<Gaylann1@AOL.COM>
Subject: Hello
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello to the the family in England. It's good to have you with
us. There is
so much info on this list serv. Welcome!
Joanne in Ohio....that is a great idea on donating blood for others.
If
anyone out there needs help, I'm sure they can find it here.
To the Harmon Family... my prayers are with your family. This
is such a
difficult time you are going through. Keep up the good work.
dsprado@PENN.com...for some reason my screen is colored and cannot read
your
messages. Do anyone out there know why this happens?
Jenn...so glad Jordan is getting along. Sounds just like Blake.
Gaylann in Tennessee
Blake's grandmother
=========================================================================
Date: Tue, 17 Feb 1998
16:53:17 EST
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: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Dear Jenn:
Glad to hear Jordan is home and doing well, also you and Joe.
I know for us
it was a really tough week, and the week afterward also. Emily
got her
stitches out the week after at the plastic surgeon's office.
One layer was
dissolving stitches inside and the top layer he took out a week later.
Believe it or not, there was one stitch that was a dissolvable one
that was
supposed to dissapear that didn't and stuck out the top and needed
to be "dug"
out later on.
I have to say that 4 months later and she has healed beautifully.
I also thought she looked funny. Her doctors said the same thing,
she will
grow into her face. You know what, she looks totally different
than she did
right after surgery. The bone is not protruding out so much already.
Anyway, glad to hear things went so well for you guys. Now you
can rest a
little bit, anyway.
Take care,
Janine
=========================================================================
Date: Tue, 17 Feb 1998
16:55:05 EST
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: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Marjorie:
Thank you for the update on BJ. I'm sorry that he is in so much
pain. It
must be very difficult for you to see him suffer like that.
You are a strong, amazing woman, and I say a prayer for your family
every day.
My thoughts continue to be with you all.
Janine Krebs
=========================================================================
Date: Tue, 17 Feb 1998
14:15:56 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Christopher Kilner
<Christopher.Kilner@USPTO.GOV>
Subject: Re: Pediatricians
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
In the first days after Ceci's birth, the most comforting news we
received was from our pediatrician, Dr. Trabert. While all the
other
doctors were throwing around terms like "mentally retarded" that they
had read in 1970s-era textbooks and telling us about all of the possible
problems Ceci might have, he told us about a boy with Apert's that
he
knew who was enrolled at the University of Colorado - and after checking
in on Ceci, his advice was to start saving for college! It was exactly
what we needed to hear at that point in time.
He has been wonderful with Ceci ever since and we've been fortunate
enough to only have to see him a few times other than check-ups.
Chris Kilner
>Something we never mention is how wonderful how pediatricians are.
We talk
>about all the other doctors and what great things they do and have
done for
>our kids, but what about those wonderful pediatricians.
=========================================================================
Date: Tue, 17 Feb 1998
18:53:13 EST
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: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: New Subscribers,England
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Welcome Brumfitt family from England. My name is Janine
Krebs and I have two
children, Nicholas and Emily, who has Aperts. She is almost 7
months old, so
I am still getting used to this syndrome.
I am sure you will find this listserve as supportive and helpful as I have.
Best wishes,
Janine Krebs (NY)
=========================================================================
Date: Tue, 17 Feb 1998
19:00:03 EST
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: Janine Krebs
<Yonstein@AOL.COM>
Subject: Re: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Jenn:
Lynn's letter reminded me that it was 2 weeks and not 1 week when Emily's
sutures came out. See, I told you it was all like a dream.
I think somebody
else actually lived through that period of time.
Janine
=========================================================================
Date: Tue, 17 Feb 1998
19:11:31 -0800
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: Laurie Ann Bailey
<jkb@ELPASO.NET>
Subject: Re: An Update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hey! Laurie Bailey here.
I'm glad to hear that you are home with a happy baby. Sometimes when
our
kids have surgery, we wonder, "Are we doing the right thing?" And when
they come out smiling, we know that we are.
Just a warning, RSV (respiratory virus) is going around in my neck of
the
woods. Jacob contracted it sometime last Thursday or Friday. Lots of
nebulizer treatments and TLC going on here.
As always,
Laurie Bailey (El Paso, IL)
=========================================================================
Date: Tue, 17 Feb 1998
19:47:04 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Nicole
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hello everybody,
We are Jack and Raquel Miller from Weston/Ft. Lauderdale, Florida.
On
October 3, 1997 our daughter was born with Apert Syndrome.
We have already been to several doctors who will be treating Nicki.
As
a matter of fact, today we were at the Neurosurgeons office.
Nicole is
tentatively scheduled for her first cranial expansion when she is 6
months old (in or about April 98). The neurosurgeon explained
what he
and the plastic surgeon are going to do. However, as parents
we would
appreciate any advice/input that you can give us. Since most
of you
have already been through this, your advice is very valuable.
We have
total faith in Nicki's doctors, but only the parent(s) can really
appreciate what it is like to have a child go through what our children
must go through.
We are very glad we registered and we hope to hear from all of you soon.
Jack & Raquel Miller
=========================================================================
Date: Tue, 17 Feb 1998
22:05:32 +0000
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: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello all!
Mark, my thoughts are with you this week. I hope you will be able
to
find a moment of peace here and there to get you through! It's
nice to
hear a husband recognizing the hard work their wives do when taking
care
of the children!
Welcome home Jordan! I was ready to contact all of my alien friends
(I
do have some personal contacts!) to see if they have seen your mother!
Thrilled to hear you are home and basking in your parent's love!
That's
the best medication!
I was talking to a friend last week about the lottery, $35 million here
this week. He asked me if I played and I said no. I would
rather be
poor than have the problems money can't fix. Thanks to my family,
I'm
not poor, nor am I finacially independent at this time, but I do have
my
blessings and you all are on that list! We are all wealthy with
blessings!
Hope all is dry, warm and well.
Joanne, if I didn't know better, it's typhoon season, in Ohio!
_____________________________________________________________________
You don't need to buy Internet access to use free Internet e-mail.
Get completely free e-mail from Juno at http://www.juno.com
Or call Juno at (800) 654-JUNO [654-5866]
=========================================================================
Date: Tue, 17 Feb 1998
22:37:16 -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: Kerri Hedinger
<khedinger@NS.GEMLINK.COM>
Subject: Re: An Update
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Laurie,
RSV is running rampid here in Va. also. Devin, my 10 month old
who has
Aperts was hospitalized this past week. He was put in isolation
because
they said that it is so contagious. Boy it really knocked him
for a loop.
He didn't need the nebulizer treatments but he sure was a sick little
boy.
I got it from him but it reacted on me like a cold. The doctors
said that
in children younger than 2 it will go directly to the lungs but in
adults it
will only be like having a cold.
Devin was dehydrated on top of that.
We had 5 other children on the Ped's floor with RSV.
Devin is feeling much better now. It took almost 2 weeks for
him to get
over it and he still has some wheezing in his lungs. They said
the wheezing
could last up to 5-6 weeks.
Hope that Jacob feels better real soon!
Kerri
-----Original Message-----
From: Laurie Ann Bailey <jkb@ELPASO.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, February 17, 1998 4:13 PM
Subject: Re: An Update
>Hey! Laurie Bailey here.
>I'm glad to hear that you are home with a happy baby. Sometimes when
our
>kids have surgery, we wonder, "Are we doing the right thing?" And
when
>they come out smiling, we know that we are.
>
>Just a warning, RSV (respiratory virus) is going around in my neck
of the
>woods. Jacob contracted it sometime last Thursday or Friday. Lots
of
>nebulizer treatments and TLC going on here.
>
>As always,
>Laurie Bailey (El Paso, IL)
>
=========================================================================
Date: Wed, 18 Feb 1998
14:39:55 +1300
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: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Robin: noticing differences
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Kia Ora Robin
Hard to remember exactly but I think Amy REALLY became aware of her differences around 4-5 years old. Like Leanne's Amy she enjoys playing with my hands (they are her "babies") and often after a long play session with them she will say "I wish I had hands like yours" which is really heart-rending.
For a long time she just stared back at children - probably because "everyone" stared at her she thought that was the right thing to do. Now, at nearly 7 years these stares and comments are becoming painful to her and I think this year is going to be our toughest (so far!). She has figured out that if she wears shoes people will notice her hands, and if she wore gloves they would just concentrate on her face. I feel so sad for her, but apart from acknowledging her inner wish to be the same as others I try not to let her dwell on it, otherwise she will not learn to accept herself for the very special person that she is.
One thing to keep in mind was a piece of research that reported that children with facial differences were less affected by teasing than children who were overweight.
And she certainly has a happier smile, bigger brown eyes (and that is saying something with our high Polynesian population!) and more open nature than a lot of children in her school. We will work on keeping it that way.
All the best
Ann
NZ
=========================================================================
Date: Wed, 18 Feb 1998
14:40:00 +1300
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: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Dissolving Stitches (was An
Update)
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Janine
>Believe it or not, there was one stitch that was a dissolvable one
that was
>supposed to dissapear that didn't and stuck out the top and needed
to be "dug"
>out later on.
We have had experiences like this. I just love the nurses that stand there and firmly state "No, it can't be, it is a dissolving stitch!" when you know darn well it is a stitch that just ain't gonna dissolve. And then they don't apologise when they investigate and find it is one.
But oh dear, I am just a mother, so how should I know!
I don't think they realise just how many times some of us go through this process. Maybe one thing they need to teach in nurse and doctor training is to read the notes and keep a mental note of the number of operations the child has gone though that the PARENTS have also gone through, and give us credit for some experience.
Great to hear of the successful surgeries - well done guys and gals. And good luck to those who are about to "front up".
Ann
NZ
>
=========================================================================
Date: Tue, 17 Feb 1998
22:46:22 -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: Kerri Hedinger
<khedinger@NS.GEMLINK.COM>
Subject: Re: Nicole
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
Welcome to the Miller Family!!
It really sounds like you are on top of everything. At some point
and time
all of us need this family to help us learn and understand our
children and what they must go through. You came to the right
place to get
answers!!!!
I have a 10 month old son, Devin, who is scheduled for his first cranial
on
March 5th. We have had to postpone the surgery twice because
of illness.
It's quite frustrating but the support here really helps you.
Good Luck and God Bless,
Kerri
-----Original Message-----
From: Jack and Raquel <jara1@BELLSOUTH.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, February 17, 1998 6:13 PM
Subject: Nicole
>Hello everybody,
>
>We are Jack and Raquel Miller from Weston/Ft. Lauderdale, Florida.
On
>October 3, 1997 our daughter was born with Apert Syndrome.
>
>We have already been to several doctors who will be treating Nicki.
As
>a matter of fact, today we were at the Neurosurgeons office.
Nicole is
>tentatively scheduled for her first cranial expansion when she is
6
>months old (in or about April 98). The neurosurgeon explained
what he
>and the plastic surgeon are going to do. However, as parents
we would
>appreciate any advice/input that you can give us. Since most
of you
>have already been through this, your advice is very valuable.
We have
>total faith in Nicki's doctors, but only the parent(s) can really
>appreciate what it is like to have a child go through what our children
>must go through.
>
>We are very glad we registered and we hope to hear from all of you
soon.
>
>Jack & Raquel Miller
>
=========================================================================
Date: Tue, 17 Feb 1998
23:05:29 EST
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: AOL User <MHTeach102@AOL.COM>
Subject: An Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
This will have to be short because I need to get to the hospital again.
Well David and I met with the hospice team this morning. They advised
us not
to attempt to take BJ home again. They feel that BJ's pain level is
increasing
so much that the hospital is the only place we can even attempt to
keep him
comfortable. The doctors, hospice team and medical ethics board sat
down with
us this morning and gave us the latest set of bad news. It seems that
BJ is
going through Kidney failure, the dialysis will work for a while, but
the
doctors don't know rather or not they can fix it. His liver is still
functioning and that is good news, but that too is unpredictable. His
breathing is being sustained by the ventalator but is stable.
Where we go next is hard to say. The doctors are only giving him miniscule
odds of a recovery. I guess I knew this was coming but it is still
hard to
beleive. The doctors have asked us to begin thinking about how we want
this to
end. I don't know what to do next so I guess I will leave that up to
God.
David has asked for a second opioinion and we are trying to see if
BJ is
stable enough to be flown to Dallas Children's Hospital, If not we
have to fly
in a team of doctors from either Pittsburgh or Miami. I know it is
a long
shot, but David says he wants to do it.
I better get going now. I am sorry if this update offends anyone, I
have tried
to put this update in the most upbeat terms possible. It may be a couple
days
before I can post another update but will try to do so as soon as we
have some
better news to report
Marjorie Clare Harmon
Proud mother of Benjamin Joel Harmon 1-16-87
=========================================================================
Date: Tue, 17 Feb 1998
23:57:06 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: foster <foster@ICONTECH.COM>
Subject: Jordans Home
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Welcome home to Jordan.Glad to hear you and yours are doindg well!
Also welcome to the Brumfittsand the Millers. We are the Fosters from
Pa.
and we have seven children, our youngest Billy who will be 1 year old
on
March 4th has Aperts. He just had his first cranial surgery on Feb
3rd. and
is doing very well.
You have found a wonderful place here filled with warm loving people
who
truley care and support each other.
Hope BJ is feeling better and hope everyday gets better for him and his family.
I wanted to sound off to anyone who is listening. It has nothing to
do with
Billy or Aperts but it is something I am fumming about. One Friday
my 14
year old daughter Shawna came home from school, she is a freshman in
high
school and she showed us her coat. It was burned all up the back. A
boy who
sits in back of her had been playing around with a lighter and caught
her
coat on fire. ThankGod she has only a small burn on her back. But the
school
felt there was no need to call me and tell me about this. Well I was
on the
phone early this morning and her principal said that because the boy
has
been in alot of trouble this year and has really been making an effort
to do
better they decided not to inform the police or me and NO susension
. He
will however replace the coat and have to tell his parents about what
happened. I can not beleive how they handeld this incident.
I don't feel this should be the end of it but my husband thinks we should
just drop it. Anyone out there who agrees with him? The things that
go on in
schools today are really sad. And I for one have a hard time accepting
it.
Billy got his stiches out yesterday and things look very well. He was
watching me on the phone today and was looking at me as if to say hay
mom
remember me. Of course I felt for the first time in along time that
things
were going good for him and I could concintrate on other problems and
that
felt good..
Karen
=========================================================================
Date: Tue, 17 Feb 1998
21:08:24 -0800
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: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: An Update
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Marjorie, God give you the strength to carry you through this.
We are
praying for you, David, BJ and your family. I hope and pray that
the new
team of doctors may shed some answers for you.
Best of wishes to you all,
Robyn Johnston
At 11:05 PM 2/17/98 EST, you wrote:
>This will have to be short because I need to get to the hospital again.
>
>
>Well David and I met with the hospice team this morning. They advised
us not
>to attempt to take BJ home again. They feel that BJ's pain level is
increasing
>so much that the hospital is the only place we can even attempt to
keep him
>comfortable. The doctors, hospice team and medical ethics board sat
down with
>us this morning and gave us the latest set of bad news. It seems that
BJ is
>going through Kidney failure, the dialysis will work for a while,
but the
>doctors don't know rather or not they can fix it. His liver is still
>functioning and that is good news, but that too is unpredictable.
His
>breathing is being sustained by the ventalator but is stable.
>
>Where we go next is hard to say. The doctors are only giving him miniscule
>odds of a recovery. I guess I knew this was coming but it is still
hard to
>beleive. The doctors have asked us to begin thinking about how we
want
this to
>end. I don't know what to do next so I guess I will leave that up
to God.
>David has asked for a second opioinion and we are trying to see if
BJ is
>stable enough to be flown to Dallas Children's Hospital, If not we
have to
fly
>in a team of doctors from either Pittsburgh or Miami. I know it is
a long
>shot, but David says he wants to do it.
>
>I better get going now. I am sorry if this update offends anyone,
I have
tried
>to put this update in the most upbeat terms possible. It may be a
couple days
>before I can post another update but will try to do so as soon as
we have
some
>better news to report
>
>Marjorie Clare Harmon
>Proud mother of Benjamin Joel Harmon 1-16-87
>
=========================================================================
Date: Tue, 17 Feb 1998
21:19:37 -0800
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: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Jordans Home
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
First of all, Jenn and Joe, I am glad to hear that Jordan is doing well.
He is a little trooper. I always swear that the kiddo's fare
better than
the parents in these surgeries! :-) Glad you all made it
through!
Karen, glad to hear Billy is doing well after his stiches removal.
Brenna's stiches were all dissolvable. Eventually they all worked
their
way out.
I am with you Karen on the coat burning incident. I would be pretty
upset
at the way school handled it too. Unfortunately, I do not have
much
experience in this area yet, so I'm not sure the proper channels to
take.
I feel that child should not be in a classroom though, if he is endangering
other childrens lifes, not to mention the whole school! I can
not believe
they did not reprimand him at all. Isn't it amazing some school
districts
will suspend kids for passing out asprin, but stuff like this is
overlooked! Good luck on handling this.
Welcome to all the new people on the list!
Hugs, Robyn Johnston
At 11:57 PM 2/17/98 -0500, you wrote:
>Welcome home to Jordan.Glad to hear you and yours are doindg well!
>
>Also welcome to the Brumfittsand the Millers. We are the Fosters from
Pa.
>and we have seven children, our youngest Billy who will be 1 year
old on
>March 4th has Aperts. He just had his first cranial surgery on Feb
3rd. and
>is doing very well.
>You have found a wonderful place here filled with warm loving people
who
>truley care and support each other.
>
>Hope BJ is feeling better and hope everyday gets better for him and
his
family.
>
>I wanted to sound off to anyone who is listening. It has nothing to
do with
>Billy or Aperts but it is something I am fumming about. One Friday
my 14
>year old daughter Shawna came home from school, she is a freshman
in high
>school and she showed us her coat. It was burned all up the back.
A boy who
>sits in back of her had been playing around with a lighter and caught
her
>coat on fire. ThankGod she has only a small burn on her back. But
the school
>felt there was no need to call me and tell me about this. Well I was
on the
>phone early this morning and her principal said that because the boy
has
>been in alot of trouble this year and has really been making an effort
to do
>better they decided not to inform the police or me and NO susension
. He
>will however replace the coat and have to tell his parents about what
>happened. I can not beleive how they handeld this incident.
>
>I don't feel this should be the end of it but my husband thinks we
should
>just drop it. Anyone out there who agrees with him? The things that
go on in
>schools today are really sad. And I for one have a hard time accepting
it.
>
>Billy got his stiches out yesterday and things look very well. He
was
>watching me on the phone today and was looking at me as if to say
hay mom
>remember me. Of course I felt for the first time in along time that
things
>were going good for him and I could concintrate on other problems
and that
>felt good..
>
>Karen
>
=========================================================================
Date: Wed, 18 Feb 1998
08:50:25 EST
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: Beth Tolson <ETolson643@AOL.COM>
Subject: Re: coat incident
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Karen
I am a teacher outside of Boston and am in the process of getting my
master's
degree in administration so I have lots of thoughts about schools and
how they
are run. I am also a parent of three and have never been hesitant
to confront
issues which raise red flags...and this is a red flag issue!!
I was outraged
when I read of your daughter's incident in school. I would definitely
press
charges against the boy and would consider pressing charges against
the school
for not enforcing some kind of safety code for their students.
Use of fire in
school is nothing short of dangerous and grounds for expulsion, especially
if
this is not a first time incident for the boy involved. If this
kind of
behavior is condoned, what next? Replacing the coat is not the
issue
here...school safety is the issue. My two cents worth....
Beth
=========================================================================
Date: Wed, 18 Feb 1998
08:59:36 EST
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: Karen Kirby-Hall
<Unclbennie@AOL.COM>
Subject: Questions
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
In a message dated 98-02-17 22:50:31 EST, you write:
<< APERT@LISTSERV.AOL.COM >>
to all on this list. I am a nurse in the Chicago land area, and
I work with
medically fragile children. I couple of nurses and I have gotten
together and
we are working on a text book geared toward healthcare providers.
This text
will hopefully assist nurses, doctors, technicians etc., on caring
for the
families and children who have a
severe medical problem. One of the things we want to include
is concerns of
parents and solutions from parents. We ( the nurses working on
this book)
believe it has to be a team effort with anyone involved in the childs
care
giving input and understanding all plans of care. What I would
like to ask
you as a group, is if I develop a questionaire, would you be willing
to take a
few minutes ( I know your all busy) to fill it out. We would
like to include
some of the answers in the text, so I will have you sign consents to
release
the info. Other things we are interested in is how your needs
change as your
child grows older. One thing I have seen, is that parents mourn
the loss of
"normal development". Such as one mom I worked with was really
upset when she
realized that her 16 year old would never drive a car. That wasn't
an issue
two years before that. Anyway, anyone interested please e-mail
me privately
and I will send out consents and hopefully we will have the questionare
completed in the next two months or so.
I have also noted that there are individuals who seem to range in age
from
teenagers to adults who have Aperts, I would be interested in hearing
from you
on how you should be involved in your health care and what we as health
care
professionals can do to make you part of the team. I strongly
believe that
the individual being treated has every right to be involved in decision
making, but that doesn't always happen. Any assistance
would be appreciated.
Thanks
Karen Kirby-Hall RN
e-mail Unclbennie@aol.com
=========================================================================
Date: Tue, 17 Feb 1998
21:43:13 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: An Update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Marjorie, I do not know what to say... you and your family are
part of
our hearts, minds, life. We will continue praying for BJ, and
asking
for strength and wisdom for you and David. I think it is a good
thing
to obtain a second opinion, as long as BJ fights you have to do the
same
( I know it is easier to say than to do so).
All our love and our prays are with you.
Elizabeth.
> Marjorie Clare Harmon
> Proud mother of Benjamin Joel Harmon 1-16-87
=========================================================================
Date: Tue, 17 Feb 1998
21:51:10 -0500
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Elizabeth de
Silva <lizsilva@SRV1.TELCONET.NET>
Subject: Re: Jordans Home
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
>
Karen,
> I don't feel this should be the end of it but my husband thinks we
> should
> just drop it. Anyone out there who agrees with him? The things that
go
> on in
> schools today are really sad. And I for one have a hard time accepting
> it.
I totally agree with you. I can not believe the schooll is doing
nothing!! This boy could have hurt your girl!! If we feel our children's
safety is in danger we have all the right to fight for it. Replacing
the coat and leave things as they are is not the solution. Now,
it was
the coat... and the next thing will be, other kid hurted? the schooll
damaged or burned?? I think you must consider asking his separation
from schooll.
> Billy got his stiches out yesterday and things look very well.
I am so glad to hear Billy is okay!!
Warm regards,
Elizabeth
=========================================================================
Date: Wed, 18 Feb 1998
08:41:41 -0800
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: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Good morning: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Good morning Marjorie, David, BJ, Jacob, Joshua and Katie:
I have just read your news.
I am sorry. I am
sorry to learn of this news, which none of us
wanted to hear. I am sorry. I am sorry to learn
that the odds appear to be against your love. That
this is possible is an outrage. That we may survive
our children i