Another note on the leaving her there by herself thing.
She's got
>great nurses whom I already know. When she has a new nurse,
I'll sit and
>talk to them and ask them tons of questions and if they make me uneasy,
I'd
>sleep right in her bed with her. I've been (Zoey's been) really
lucky and
>they put the non-friendly nurses on during the day, and I stay there
with her
>until they're gone. .....still trying to convince myself.....
Christina,
you are a good mother of both your children, Zoey and Tia. They
are both
blessed. I hope zoey will be back to herself soon. It is
good news that
she is eating again. She is in our thoughts and prayers.
Hugs, Robyn
>
=========================================================================
Date: Thu, 1 Oct 1998
12:00:51 -0700
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From: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Christina & Zoey: Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
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Good afternoon Christina:
You are doing your best and
I invite you to know that we
all may doubt that we are
from time to time. Despite
your doubts and your fear--
guilt--you're a great mom.
Good going, Christina.
Know that I am with you.
All the best,
Scott
=========================================================================
Date: Thu, 1 Oct 1998
15:41:24 EDT
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From: Patbrat718@AOL.COM
Subject: Re: APERT Digest - 29 Sep 1998
to 30 Sep 1998 (#1998-51)
Mime-Version: 1.0
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Christina,
I too share the single parenthood life, and also have two children that
need
me. And I know a few couples who wouldn't be able to do the job your
doing.
Hang in there, and don't waste anytime feeling guilty.....no
sense, your
getting the job done, and you have two little girls who know they are
loved.
Zoey is in our prayers.
Patti
=========================================================================
Date: Thu, 1 Oct 1998
13:55:01 -0700
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From: Christine Clark
<apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Mrs. Excitement Update
Comments: To: Ann Coombs-Kenney <anncoombs@juno.com>,
Brian Clark
<BClarky@aol.com>,
CCA - Charlene
Smith <DNKM90A@prodigy.com>, Colleen <C27457@aol.com>,
DAD <leop@thegrid.net>,
Denise & Mike <STSair2@aol.com>,
Dufours <Readynow96@aol.com>,
FACES - Lynne
Mayfield <faces@mindspring.com>,
Florence &
Phil <LaRiviere@refuge.org>,
Jean Still <jrstill@sonic.net>,
Jim & Deb <CLARKIE8@aol.com>,
Joanne Lindamood
<chanan8@juno.com>,
Karen &
Peter <PeterK7470@aol.com>,
Kathy Riley
<105574.3156@compuserve.com>,
Kelly Tierney
<ktierney@montgomery.com>,
Lee Ann <LNoyes5968@aol.com>,
Majka Tolarova <mto@itsa.ucsf.edu>,
Meredith <T_MEREDITH_ROSS@amat.com>,
Mike & Tina <TMTIER@aol.com>,
Nancy Watson-Agarwal
<ng_watson@interx.com>, Paul <pfccfpvp@aol.com>,
Pete & Korby
<KCLARK2113@aol.com>, Robin <rmpbailey@juno.com>,
Sue <S27457@aol.com>,
Tammy <TStark@pmrp.com>
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Hello to all,
A re-cap of my life in lock-up so far on the 11th floor at UCSF.
The first 4 days were no picnic living in a toxic (chemo) wasteland
accompanied with nausea and vomiting.
I received my stem cells back on Sept. 28th. Went well except
for an
unbelievably nauseating taste in my mouth from the preservative that
the
little cells were frozen in. Fortunately, it didn't last too
long.
My white cells are down to almost zero and my red blood cells and
platelets are falling, too. I'm told I will probably need the
blood
transfusions by this weekend. I haven't been blessed with the
horrendous mouth sores that usually come along with this high dose
chemo
regime, knock on formica (no wood in this room, ha).
I am on constant IV antibiotics, antivirals and now an antifungal that
has a horrendous side effect. It is like coming down with a fever
where
all your muscles hurt, you keep stretching and shiver terribly - only
three times worse. Fortunately, a shot of Demerol takes the symptoms
away almost immediately.
I am still amazed at how we are all told to avoid things that cause
cancer and then when you get it - they pump these toxins all through
you.
Jack has been staying at the hospital day and night since Sept. 28th.
He goes out to the student union to work out (comes back looking and
feeling pretty old - just reaffirms what I keep telling him, ha!)
He
has been a blessing. Before he came my father and sister
have been
coming up, they will be back next week. Our niece, Colleen, has
been
taking great care of Michelle and Shannon for us. THANK GOD FOR
FAMILIES!!!!!
Thank you to everyone that has sent cards. We have them hanging
in my
room to see everyday. It helps me keep my sanity, not that I
had much
before the lock up! Jack and I keep shaking our heads that we
finally
have time for just the two of us and we can't have a whole lot of fun.
We are keeping our sense of humor though. His latest haircut
was with a
hair razor set at #1. For those who don't know, that is almost
bald.
He is being sympathetic to me, although I am still holding on to quite
a
bit of hair - longer than Jack's. The doctors say I will definitely
loose it all this time but I'm still hanging on to it.
I am trying to break the record on busting this joint sooner than anyone
else has. I'll keep you posted!!
All my best to everyone!!
Christine
(AKA Mrs. Excitement - they don't call
me this for nothing, ha!)
=========================================================================
Date: Thu, 1 Oct 1998
14:29:15 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Mrs. Excitement Update
Mime-Version: 1.0
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Christine,
thank you fot the update. It must be tough - but then again, you
are one
tough lady. :-) I am glad that you haven't lost your sense
of humor
through all of this. It really helps. Hope to hear your
out soon.
Hugs, Robyn J
=========================================================================
Date: Thu, 1 Oct 1998
14:40:09 -0700
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Pat and EvaJessie
Mime-Version: 1.0
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Pat adn EvaJessie,
Glad to hear round 2 went well. A big hurdle overcome. I
hope recovery is
going smooth. I can't wait to see what Dr. Doug has done.
Let us know
when she gets another picture on her page! Big hugs to you all!
:-)
Robyn J
=========================================================================
Date: Thu, 1 Oct 1998
18:49:36 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Over&home
In-Reply-To: <3.0.32.19980930231402.00d56300@ordata.com>
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> Another note on the leaving her there by herself thing.
She's
got
> >great nurses whom I already know. When she has a new
nurse, I'll sit and
> >talk to them and ask them tons of questions and if they make me
uneasy, I'd
> >sleep right in her bed with her. I've been (Zoey's been) really
lucky and
> >they put the non-friendly nurses on during the day, and I stay there
with her
> >until they're gone. .....still trying to convince myself.....
The moms of our babies in the NICU pretty much have
to trust us
too. Occasionally we have one who arranges for a family member
to
stay 24 hrs, but eventually that begins to pale when you're talking
about really long-term hospitalizations (we've had kids as long as
7
months). One or two nights, you might be able to leave your other
daughter with grandma (thank goodness for grandmas), but you have to
do your best for both of them. I hope you'll all be home together
soon -- and good for you talking them into giving her something to
eat. Poor kid probably felt MUCH better afterwards.
Judy
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Thu, 1 Oct 1998
18:08:52 -0700
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From: Scott Pengelly
<scottp@EUGENE.COM>
Subject: Good Wishes, Mrs. Excitement:
Scott
Comments: To: AOL User <MHTeach102@AOL.COM>
Mime-Version: 1.0
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Good evening Christine:
Thanks so much for your email update.
What wonderfully clear and present
writing. You invite me into your
toxic waste dump times and I am
with you, Christine. And, I'm bald...
so I kind of know what you are
feeling.
Glad to hear that you can enjoy
some relief--with Demoral and that
you are free from sores in your
mouth. Hope you're able to rest.
All the best, Christine.
Scott
=========================================================================
Date: Fri, 2 Oct 1998
08:33:16 EDT
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From: Nodrmat26@AOL.COM
Subject: Everything
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Zoey's Mom here in much better spirits. Zoey has been doing extremely
well
and should be home soon.
I want to say to Christine, what a brave women. I am such a baby
when it
comes to being uncomfortable and I don't think I'd be in such good
spirits.
And what a wonderful husband to be there by your side, I guess I'll
have to
rethink the "all men are pigs" theory. Ha ha.
And thank you to all who responded to my "trying to convince myself"
thing.
You have all accomplished making me feel better and I do know that
I'm doing
all that I know how to do to provide for both girls. And they
sure better
know that I love them!!!!
Called the hospital when I woke up this morning and she had another
great
night, actually slept through the night and I'm sure they'll atleast
now be
talking about discharge plans, rather than giving me that strange look
when I
ask when she's going home.
I hope everyone has a really good day!!
Christina
San Antonio
=========================================================================
Date: Fri, 2 Oct 1998
10:22:24 EDT
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Subject: Re: Everything
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Christine,
I think all of us, and our kids as well can attest ot the wonders of
Demerol.
God bless the person who invented this class of drugs!!! Glad to hear
you are
doing well, and we all plan on you breaking that record!!
Jenn(Tampa/St. Pete)
=========================================================================
Date: Fri, 2 Oct 1998
14:45:31 -0700
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From: Christine Clark
<apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Re: Good Wishes, Mrs. Excitement:
Scott
MIME-Version: 1.0
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> And, I'm bald...
> so I kind of know what you are
> feeling.
Thanks for the message, Scott. Jack has shaved his head and my
father
is bald so I am feeling right in. I have been lucky enough to
see who I
inherited my head from. It greatly resembles my paternal grandfather's!
Hopefully, I also inherited his longevity - he was almost 104 when
he
died!
Thanks again.
Christine
=========================================================================
Date: Fri, 2 Oct 1998
22:08:47 EDT
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From: JReyesmich@AOL.COM
Subject: A little story about Khris!
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Hi everybody
Claudia here regarding an invitation from Ruth Contreras. The reason
I'm
writing you is because Ruth is having problems e-mailing to this listserv.
(She is trying to get it fixed) While she is doing that I invite you
to read
her little article that is going to be edited by 10/09- please don't
miss this
adorable story about an Apert family.
This article will be edited on Special Child Magazine (online), I'm
sure
you'll smile when you read about Khris.
There is always a good time to share our little stories. I hope you
enjoy it.
Claudia & Ruth
=========================================================================
Date: Sat, 3 Oct 1998
01:06:37 -0400
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Good Wishes, Mrs. Excitement:
Scott
Mime-Version: 1.0
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>Hopefully, I also inherited his longevity - he was almost 104 when
he
>died!
>
>Thanks again.
>
>Christine
Amen to that Christine!
Pat and EvaJessie
>
email to: bluenose@telusplanet.net
IM: onlypeach
One doesn't discover new lands without consenting to lose sight of
the shore
for a very long time. Andre Gide
=========================================================================
Date: Sat, 3 Oct 1998
10:29:46 EDT
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From: BBarn60368@AOL.COM
Subject: Re: Mrs. Excitement Update
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Christine,
I have so much respect for you! It just amazes me that you can
be going
through what you are going through and still retain such a sense of
humor.
You are such a wonderful example of the fact that it is not what happens
to
you that counts, it is what you do with what happens to you that is
important.
God bless you, you are such an inspiration to us all. I'm sure
that each of
us have thrown our little pity parties at times, and your e-mail was
a
wonderful antidote for the "poor me" feelings that tend to creep in
from time
to time. You remain in my prayers.
Alice in Central Florida
=========================================================================
Date: Sat, 3 Oct 1998
20:18:52 EDT
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From: Frank & Annette
Contrino <contrino@BUFFNET.NET>
Subject: Re: Zoey is Hospital
Mime-Version: 1.0
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... snip ...
>
>INSIST ON IT. GO TO THE TOP IF YOU HAVE TO. This is YOUR
child and not
>the hospital's so YOU have the final say.
>
>I'll get off my pedestal now.
>
>Christine Clark
>
Good to see you're still your mellow self Christine. Haven't lost
any of
that feistiness, have you. :-)
Frank Contrino
contrino@buffnet.net
=========================================================================
Date: Sat, 3 Oct 1998
20:20:06 EDT
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From: Yonstein@AOL.COM
Subject: Re: It's Over and We are Home
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Pat & Eva Jessie
Welcome Home!!!! Boy, Pat, she sounds like a real tough kid with
great
spirit. This was a real biggie for you guys, but it sounds like
you came
through it with flying colors. Hope the return to school goes
well on Monday.
Best wishes,
Janine
=========================================================================
Date: Sat, 3 Oct 1998
20:22:18 EDT
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From: Yonstein@AOL.COM
Subject: Re: Mrs. Excitement Update
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Dear Christine:
Thanks for the update.
Glad to see you haven't lost your sense of humor during this very difficult
time. Hopefully they will release you soon. It's nice to know
you can count
on people when you need them, isn't it?
Best wishes,
Janine
=========================================================================
Date: Sat, 3 Oct 1998
20:54:31 EDT
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From: Yonstein@AOL.COM
Subject: Fwd: Check out Guess the Beer
Mime-Version: 1.0
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This is a multi-part message in MIME format.
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This is for any of you guys or gals that are beer drinkers. Someone
sent it
to my husband.
Enjoy.
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From: NJK189@aol.com
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To: Yonstein@aol.com
Subject: Fwd: Check out Guess the Beer
Date: Fri, 2 Oct 1998 19:14:01 EDT
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For Brian
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From: KBrad88971@aol.com
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To: Gregg471@aol.com, MCHALEFIVE@aol.com, Smiley292@aol.com, NJK189@aol.com,
Mit131@aol.com, Tony153@aol.com,
SGTHEADO@aol.com
Cc: KBrad88971@aol.com
Subject: Fwd: Check out Guess the Beer
Date: Sun, 27 Sep 1998 09:29:09 EDT
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From: Copbroker@aol.com
Return-path: <Copbroker@aol.com>
To: KBrad88971@aol.com, TickleRen8@aol.com, ALLAHUAKBAR@WEBTV.NET,
Harpesque@aol.com, LASTPANTHR@aol.com,
Tif372@aol.com,
CANCUN0389@aol.com, Sackemm@aol.com,
HUROL@WEBSPAN.NET, MSKRIS30@aol.com
Subject: Fwd: Check out Guess the Beer
Date: Sat, 26 Sep 1998 20:19:29 EDT
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From: PREPPY73@aol.com
Return-path: <PREPPY73@aol.com>
To: APBCompute@aol.com, Nutonwkin@aol.com, Copbroker@aol.com, BIGG26@aol.com,
Twinwalk@aol.com, Lelu149@aol.com,
DENGLISH@ARTERHADDEN.COM,
RAVAGE73@aol.com, LUVGOT2ME@aol.com,
SB9449@aol.com
Cc: Samy73@aol.com, RNURSE@ACCESS.DIGEX.NET, SgtRokk@aol.com, GRIPPER21@aol.com
Subject: Check out Guess the Beer
Date: Sat, 26 Sep 1998 12:49:26 EDT
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<A HREF="http://www.kellys.com/cgi-bin/guessbeer.pl">Click
here: Guess the
Beer</A>
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Date: Sun, 4 Oct 1998
09:24:52 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Mrs. Excitement Update
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Christine-
Thanks for keeping us posted. You are one of the most amazing
people I know.
Your incredible source of strength and humor is so admirable.
I know what a
tough road this is for you and your family and all of you seem to be
handling
things so well. You are very blessed to have such a great support
system that
Jack can stay with you. We pray that everything goes well and
you are out of
there in record time. When all of this is said and done it would
be really
neat if you wrote a book (with your great journalist talent).
It would be a
great comfort to others to hear your story.
(Like you won't already have a million other things to do--I just think
you
would make a really great author.) We continue to pray for you
and your
family!
All our best-
The Sieberts (Brenda, George, Melissa and Jonathan)
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Date: Sun, 4 Oct 1998
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Subject: Re: Seth update
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Dori-
So glad to hear that Seth may get his trach out already. He seems
to be
recovering very quickly and we're so happy for that. Hope all
continues to go
as well.
Brenda
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From: GSieb91515@AOL.COM
Subject: Re: It's Over and We are Home
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Pat-
Welcome home! That was a tough one. So glad to hear that
EvaJessie is doing
well and ready to go back to school already. Your surgeon sounds
like quite a
great doc. We're looking forward to seeing the updated pics.
Take care and
know that we have been thinking of you all.
Brenda
Houston
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Date: Sun, 4 Oct 1998
22:22:21 EDT
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From: Nodrmat26@AOL.COM
Subject: Zoey's home
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Hello, a very tired Zoey's Mom here.
I just wanted to take a quick second to let everyone know that Zoey
came home
yesterday. If I told everyone this yesterday, forgive me, I think
I have a
bad case of ADD coming on. (hahaha) We're both so glad
to be released from
prison. She's doing well. Thank you everyone for listening
to me rambling on
and on about whether I was doing what I should be doing or not.
Sometimes I
get a little depressed.
Talk to you later
Christina
San Antonio
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Date: Mon, 5 Oct 1998
15:17:37 -0400
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From: Jack and Raquel
<jara1@BELLSOUTH.NET>
Subject: Re: Mrs. Excitement Update
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Hi Christine,
I am so glad to hear that you are in such great spirits, keep it up
and keep up your faith in God and you and
your family will be fine......You are a great lady...
Best wishes...
Raquel Miller
>
>
>
>
>
>
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Date: Mon, 5 Oct 1998
16:29:25 +0000
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From: jgibson2@EROLS.COM
Subject: Re: Zoey's home
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Christina,
I'm so glad Zoey is back home! BTW,
that's not ADD, it's ICU
psychosis -- nothing a few nights sleep won't cure.
Judy
Judy Gibson
jgibson2@erols.com
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From: Firefli007@AOL.COM
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Glad to hear Zoey is home
Get some rest!!
Good luck with all the rest
Jenny in Georgia
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Ritalyn
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Hi:
I just wanted to know if anyone out there that has used or is using
Ritalyn( sorry I don't know how to spell it). I was approached today
by
Michelle's case worker at school and they just mention that we may
want to
check into it.
Michelle is a second grader and she is doing great. She had a test
done on
reading comprehension and decoding words and she did not do so well.
She
can read just fine and we are working on her Math and she is amazing.
I figure I start my research with you guys.
Thanks,
Martha
Algonquin, IL
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Therapists?????
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Hello Everyone! Glad to hear Zoey is home from the hospital and
that
EvaJessie's surgery went well. We continue to struggle with keeping
Houdini Hill in her bandages! She got rid of the casts and is
now in gauze
and coban wrapping. However, she managed to fling one of them
across the
room last night. I am so glad my husband doesn't mind playing
doctor!!!!!!!! ANYWAY, we are now trying to get Carmen Rae started
with
therapy for her new thumbs and we're a little confused. The hand
surgeon
wants her to see a CERTIFIED HAND THERAPIST. Anyone know the
difference
between this and an OCCUPATIONAL THERAPIST???????? Just wondering
if there
is a difference, and if so, what? Of course, we can take her
to an
occupational therapist close to home; however, the Certified Hand Therapist
will require a little bit of a drive. Just want to be sure it
is well
worth it!!!! Hope you guys can help. Also, what type of
therapist did
your children see after their thumbs were released????? What
kind of
things were done? How often did you take them??
THANK YOU IN ADVANCE!!!!!!! ANY HELP WILL BE APPRECIATED!!!!!
Robin Hill
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Date: Tue, 6 Oct 1998
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From: DnJJenner@AOL.COM
Subject: Re: Therapists?????
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In a message dated 10/6/98 12:11:09 PM Pacific Daylight Time,
CARMENRAE@PRODIGY.NET writes:
<< CERTIFIED HAND THERAPIST. >>
OCCUPATIONAL THERAPIST?
I am sorry just for having thumbs released??? I never
heard of anything
like that.
it may take them a while to discover what they can do with their new
hands and
fingers but a THERAPIST??
Courtney seen no one and she is in kindergarden now and colors with
crayons,
cuts with sissors, regular I might had, not special ones they tried
to give
her, and draws pictures with pens and pencils, she is learning how
to write
her name too, she is getting so big.
anyway, I just don't
see the need for someone like that, it must be
a money thing.
take care
always Dawn
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From: Tim & Carol
<tcgraves@BELLSOUTH.NET>
Subject: Re: Ritalyn
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Nicholas was on Ritalin for 9 months and had some bad side affects..
the
medicine takes affect rapidly and wears off radpily.. there is no gradual
to
it.. that caused him headaches (DAILY) and very aggitated and irraitable..
cried at everything...however, I know many children that take it without
any
side affects.. Nicholas is now taking an alternative to Ritalin called
Adderall, it begins work slowly and wears off very gradually.. and
it last
abt 8 hours.. compared to Ritalins 3-4 hours.... so he doesnt have
to take
it at school.. just once in the morning before he leaves for school....and
it has helped tremendously ! I was very much against using any
drugs at
first, but agreed to just try this one and it helps him so much and
he says
he feels better and calmer, but not "zombie-like" like some of the
drugs can
do.. he is still active, just more focused and it is easier for him
to pay
attention and concentrate.. and not so easily distracted..and has had
NO
side affects at all from Adderall thus far...
Hope this helped some.
Carol Graves
P.S. I, in no way meant to down Ritalin... I know it has helped
many
children,, it just didnt work out for us.. I am just saying, there
are
others if Ritalin doesnt work, dont give up..
-----Original Message-----
From: Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, October 06, 1998 12:59 PM
Subject: Ritalyn
>Hi:
>
>I just wanted to know if anyone out there that has used or is using
>Ritalyn( sorry I don't know how to spell it). I was approached today
by
>Michelle's case worker at school and they just mention that we may
want to
>check into it.
>Michelle is a second grader and she is doing great. She had a test
done on
>reading comprehension and decoding words and she did not do so well.
She
>can read just fine and we are working on her Math and she is amazing.
>I figure I start my research with you guys.
>
>Thanks,
>
>Martha
>Algonquin, IL
>
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From: jamerman@UTI.COM
Subject: Re: ritalin
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NIck has been on ritalin now for 2 years. The reason being that
he had a
hard time "focusing" on his school work. He was more interested in
what
eveyone else was doing instead of what he should be doing. The
ritalin has
worked wonders whith him. He still may not be a scholar but his work
has
improved dramatically.
Since you live in Illinois, you may want to inquire about having her
tested
at Loyola. I felt their team there was very good. If don't have
the drs.
name at my finger tips but if you need it, I'm sure that I can find
it. If
I remember right, his ped. is the one who referred us to them.
Judy
p.s. He has had no side effects
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From: jamerman@UTI.COM
Subject: Re: therapists
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I agree with Dawn. Nick uses regular scissors and colors and works those
little thumbs to their full advantage. He still gets ot but I
also have
never heard of a certified hand person either.
Judy
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From: jgibson2@EROLS.COM
Subject: Re: Ritalyn
In-Reply-To: <199810061359_MC2-5BCD-8AAA@compuserve.com>
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> I just wanted to know if anyone out there that has used or is using
> Ritalyn( sorry I don't know how to spell it). I was approached today
by
> Michelle's case worker at school and they just mention that we may
want to
> check into it.
> Michelle is a second grader and she is doing great. She had a test
done on
> reading comprehension and decoding words and she did not do so well.
She
> can read just fine and we are working on her Math and she is amazing.
> I figure I start my research with you guys.
Ritalin isn't the first thing I think of for a child
who is
having difficulty with reading. My oldest (17 now) has
been on
ritalin since first grade. It really has had little or no effect on
his reading ability. Glasses for his mild astigmatism did
work a
miracle cure for his reading difficulties,though.
Ritalin is used to treat ADD/ADHD. If
a child can focus on
her work and isn't disruptive in class, ADD/ADHD isn't very likely
as
a diagnosis. I'd want to know WHAT besides difficulty decoding
words
makes them suspect ADD/ADHD. If that's the only thing, tell them
to
rule out specific learning disablities first.
Judy
Judy Gibson
jgibson2@erols.com
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From: Tim & Carol
<tcgraves@BELLSOUTH.NET>
Subject: Re: Ritalyn
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-----Original Message-----
From: jgibson2@EROLS.COM <jgibson2@EROLS.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, October 06, 1998 5:29 PM
Subject: Re: Ritalyn
Judy, you are so right... Nicholas was tested extensively first
and we
checked vision, hearing.. and all other possibilities.. before I would
even
consider trying him on it...
Carol Graves
Ritalin isn't the first thing I think of for a child
who is
having difficulty with reading. My oldest (17 now) has
been on
ritalin since first grade. It really has had little or no effect on
his reading ability. Glasses for his mild astigmatism did
work a
miracle cure for his reading difficulties,though.
Ritalin is used to treat ADD/ADHD. If
a child can focus on
her work and isn't disruptive in class, ADD/ADHD isn't very likely
as
a diagnosis. I'd want to know WHAT besides difficulty decoding
words
makes them suspect ADD/ADHD. If that's the only thing, tell them
to
rule out specific learning disablities first.
Judy
Judy Gibson
jgibson2@erols.com
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Date: Tue, 6 Oct 1998
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From: Tim & Carol
<tcgraves@BELLSOUTH.NET>
Subject: Re: Ritalyn
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P.S. Nicholas was tested and diagnosed with ADHD and
even after that we
tried several things before the Ritalin.. behavior modifacation therapy,
different vitamin/herbal therapies... but definitley get a testing
and
diagnosis for ADHD/ADD before allowing them to her on anything like
that.. I
have a friend whose pediatrician put her son on it without any testing
whatsoever...!!
-----Original Message-----
From: Tim & Carol <tcgraves@BELLSOUTH.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Tuesday, October 06, 1998 7:01 PM
Subject: Re: Ritalyn
>-----Original Message-----
>From: jgibson2@EROLS.COM <jgibson2@EROLS.COM>
>To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
>Date: Tuesday, October 06, 1998 5:29 PM
>Subject: Re: Ritalyn
>
>
> Judy, you are so right... Nicholas was tested extensively first and
we
>checked vision, hearing.. and all other possibilities.. before I would
even
>consider trying him on it...
>
>Carol Graves
>
>
>
>
> Ritalin isn't the first thing I think of for a
child who is
>having difficulty with reading. My oldest (17 now) has
been on
>ritalin since first grade. It really has had little or no effect on
>his reading ability. Glasses for his mild astigmatism
did work a
>miracle cure for his reading difficulties,though.
>
> Ritalin is used to treat ADD/ADHD.
If a child can focus on
>her work and isn't disruptive in class, ADD/ADHD isn't very likely
as
>a diagnosis. I'd want to know WHAT besides difficulty decoding
words
>makes them suspect ADD/ADHD. If that's the only thing, tell
them to
>rule out specific learning disablities first.
>
>Judy
>
>
>Judy Gibson
>
>jgibson2@erols.com
>
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From: Jenngram@AOL.COM
Subject: Re: Therapists?????
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Jordan has always seen an OT and We LOVEEEEEEE her, I can not even go
into
what an amazing person she is, and how much she has helped Jordan.
However,
she will be the first one to admit that she doesn't do much that being
a kid,
he sorta just does what he wants....she always says that Jordan is
Jordan's
best therapy. The surgeon felt the same way, his opinion was always
that as a
kid, he will manipulate and use his new digits, unlike adults who are
resistant b/c of pain. Kids tend to wrok through it b/c they don't
want to be
slowed down. Carolyn does show Jordan what he can do b/c a lot of times
he
doesn't realize that these new fingers can do lots of neat things,
and boy has
he had fun getting inot trouble...I thought things would be easy since
he
didn't have all his fingers at one time.....NOPE.....
Perhaps you can ask your
doctor if the OT would work for now, and if there
starts to be signs of her not using her new thumbs, then perhaps see
the
specialist???
Good Luck
Jenn(Tampa/St. Pete)
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: FW: Sad news
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John and Margaret are not subscribed to the listserv at this time.
Please send any condolences to them directly at JonDxn@aol.com.
> -----Original Message-----
> From: JonDxn@aol.com [SMTP:JonDxn@aol.com]
> Sent: Saturday, October 03, 1998 8:57 PM
> To: catndon@apert.org
> Subject: (no subject)
>
> Dear Friends:
>
> It is with devastating sadness that I have to inform you that Lizzie
> Dixon
> passed away on September 26th. It happened at home while she was
> asleep. The
> actual cause of death was respiratory failure probably brought on
by a
> seizure.
>
> We just wanted you to know that you and your Internet site brought
> support and
> information to all of us parents of Apert kids. Please leave her
> picture on
> Teeter's page.
>
> We wish you all the best. Please remember how special your kids are
> and how
> blessed you are to have been chosen as their caretakers.
>
> Sincerely,
>
> John and Margaret Dixon
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: Ritalyn
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Hi Carol:
My husband and I are not wanting to use anyhting on Michelle unless
that is
the only hope, which brings me to find out all about this Ritalin stuff
or
any other medication. She can be easily distracted in class but
she is not
disrupting or anyhting like that. We think that with help at home from
Mom
& Dad she can do just fine. She wears glasses already so I don't
think is
the vision and like I said she can read just fine She just needs to
pay
attention when the teacher or whoever is reading a book so she may
be able
to answer questions about it.
Thanks for al lthe info.
Martha
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Judy,
Thanks for the info and if you don't mind looking up the Dr's names
I would
appreciate it.
Thanks
Martha
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Therapists?????
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Hi Robin:
Re: Hand therapist or OT
After Michelle's hand surgeries we were directed to an occupational
therapist. We did some streching and splints. So I can't comment on
a Hand
therapist but Michelle is doing very well, and it's amazing when they
decide to do something they won't stop until they get it. Michelle
is 7
years old she can do just about everything. Tie her shoes, cut with
scissors her own way (thumbs down), buckle her shoes, do buttons (slowly
but she can do it).
Hope this helps.
Martha
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From: jamerman@UTI.COM
Subject: Re: ritalin
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Martha,
The Dr. is :
Michael S. Appleby, Ph.D
Assistant Professor of Neurology and Pediatrics
708-216-3539
Loyalo University Medical Center
Maywood, Il.
Nick was tested in Novemaber of 96.
I told you that his pediatrician referred me to him but looking at
the
paperwork. I must have gotton his name from the ped. and called there
myself.
I do remember when we went there that I took nick's school evaluations
for
the Dr. too.
Good luck,
Just let me know if I can help you anymore
Judy
----------
> From: Ryan Bradley <Bradleys_r@COMPUSERVE.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: ritalin
> Date: Wednesday, October 07, 1998 2:24 PM
>
> Judy,
>
> Thanks for the info and if you don't mind looking up the Dr's names
I
would
> appreciate it.
>
> Thanks
>
> Martha
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From: CoH1862@AOL.COM
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Martha,
My daughter Mallory was tested for ADD
but with no conclusive results.
She has trouble with focusing also. The Dr. put her on Ritalin also
with very
bad side effects. So being the mother and nurse I took her off and
things got
better. She failed phonics every year but read on a 3 grade higher
level. She
has always had trouble with math and language. Two years ago we had
a
principal at our school who talked with us frequently and came up with
the
diagnosis of dyslexia called pen to paper. They learn and know it but
can't
write it down on paper. We study for tests and she can tell me all
the answers
but fails the written test. Last night I had another student teacher
tell me
the same thing. Now we are looking into this. If anyone knows anything
about
this please let me know atCoH1862@aol.com.
Thanks,
Diane
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From: foster <foster@ICONTECH.COM>
Subject: No surgery again
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Billy was sheduled for surgery on his hands tommorow but, has come down
with
another cold and is running a temp of a little over 101. This is the
third
time we had to cancel this surgery. We almost made it this time. I
am not
the least bit upset this time . Well, I am sorry my big boy is sick
but, as
far as the surgery is concerned so what it is not as if a few more
weeks
will make that much of a difference to him or us. I refuse to
let such
things upset me anymore. So, tomorrow morning instead of having surgery
Billy will be having breakfast and watching Blues Clues.
Hope all is well and everyone is mending fast.
Karen(PA)