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Irgendwer aus Deutschland?
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celina
Posted 2004-10-12 1:01 PM (#3996)
Subject: Irgendwer aus Deutschland?



Veteran

Posts: 160
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Location: Krunkel, near Bonn, Germany		Hallo! Ich war länger nicht auf der VEPTR Seite und entdecke nun eine Spalte extra für Deutschland! Eine klasse Idee!!! Leider hat bisher keiner geschrieben, ich fange jetzt einfach mal an, in der Hoffnung, das jemand aus Deutschland schreibt, bzw. aus dem Deutschsprachigen Raum. Wäre klasse, mal in der eigenen Sprache Erfahrungsaustausch betreiben zu können.
Zur kurzen Information: Opperiert wurde unsere Tochter im Januar in Düsseldorf in der Uniklinik. Sie ist das erste Kind, das Bundesweit nach der VEPTR Methode opperiert wurde. Und zwar von einem Dr. Smith, der hierher kam, um Prof. Krauspe diese Methode zu lehren. So, hoffen nun inständig auf Post!!!
Viele Grüße,
Chris
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Kerstin S.
Posted 2004-12-31 7:51 AM (#5606 - in reply to #3996)
Subject: RE: Irgendwer aus Deutschland?


Hallo Chris,
ich habe einen Sohn, 3 Jahre alt. Er wurde mit KFS geboren. Bei Ihm ist VEPTR in der Kinderklinik Hamburg- Altona vorgesehen. Wir suchen deshalb nach Informationen von Betroffenen. Ich hoffe sehr, Sie beantworten meine Post.
Alles Gute
Kerstin
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josiejean
Posted 2004-12-31 3:47 PM (#5613 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Posts: 1076
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Location: Silver Lake, Kansas		okay, you lost me after "hallo"

shawn
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celina
Posted 2005-01-03 11:03 AM (#5649 - in reply to #3996)
Subject: RE: Irgendwer aus Deutschland?



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Posts: 160
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Location: Krunkel, near Bonn, Germany		Hallo Kerstin!
Ich freue mich sehr über Post aus Deutschland. Es ist gut zu wissen, eigene Erfahrungen auch mit anderen Familien teilen zu können. Ich denke, daß man, wenn das eigene Kind betroffen ist, die Sorgen, Ängste und Fragen sehr gut nachvollziehen kann, die einem immer wieder durch den Kopf gehen. Celina´s Operation ist jetzt ziemlich genau ein Jahr her, mitlerweile stehen wir vor der 2. Expansion. Die erste fand am 15. Juni statt. Und ich kann nur sagen, wir sind froh und dankbar, die Chance bekommen zu haben, unser Kind nach der VEPTR Methode opperieren zu lassen. Celina´s Skoliose wurde trotz Korsett, daß sie 24 Stunden/Tag tragen mußte, immer schlimmer. Wir wußten, daß sie früher oder später opperiert werden mußte, hatten aber auch große Angst vor dem Tag, da nur die schwere OP (Versteifung der Wirbelsäule) in Aussicht stand. Hoffnung hatten wir immer, daß sich bis dahin noch etwas anderes finden würde, was nicht so gefährlich ist wie die Versteifung. Als unsere Hoffnung dann am 7. Januar 2003 in Form eines Anrufes aus der Uniklinik Düsseldorf wahr wurde, waren wir sehr überrascht, denn wir mußten uns schnell entscheiden, ob wir Celina 3 Wochen später opperieren lassen wollten. Wir hatten noch nie von VEPTR gehört. Doch wir entschieden uns dafür, wollten wir diese Chance doch nicht verstreichen lassen. Heute denken wir, die richtige Entscheidung getroffen zu haben. Celina ist ein sehr lebendiges, junges Mädchen. Ihr geht es rundum gut. Wir sind sehr glücklich, gerade weil es nicht selbstverständlich ist!
Nochmals vielen Dank für das Feedback. Als ihr Mann angerufen hat, war ich sehr überrascht, positiv überrascht!!! Ich hoffe, bald von ihnen zu hören.

Bis dahin wünsche ich alles Gute!

Chris
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celina
Posted 2005-01-03 11:06 AM (#5650 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Posts: 160
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Location: Krunkel, near Bonn, Germany		Hello shawn!

What did you meen with "You lost me after Hallo"?
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celina
Posted 2005-01-03 1:35 PM (#5651 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Posts: 160
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Location: Krunkel, near Bonn, Germany		I would like to say thank you to the administrators!!! It was a great idea to install forums for different countrys. This gave till yet one other familiy a way to get in contact with us. So we are 2 familiys now from germany who found each other. thanks again. I whish you all a great year 2005!!!
LOL
Chris
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josiejean
Posted 2005-01-03 11:15 PM (#5655 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Location: Silver Lake, Kansas		Hi Chris.
I was just trying to be funny since i couldn't (obviously) uderstand anything you were writing about to your friend. The only thing i could understand was that "hallo" probably meant "hello".

i too think it's a great idea to have the ability to write in another language to find more families who are going through what you are.

shawn
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celina
Posted 2005-01-04 7:00 AM (#5671 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Posts: 160
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Location: Krunkel, near Bonn, Germany		Hi shawn!

Now I can lough, better late than never! And I can explain my german friend what you mean.

Chris
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Zoes Nana
Posted 2005-01-04 7:39 AM (#5673 - in reply to #5671)
Subject: Re: Irgendwer aus Deutschland?



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Location: Plymouth, Pennsylvania		DEAR CHRIS,

IT JUST IS WONDERFUL, THAT WE CAN COME TOGETHER FROM ALL OVER
THIS WORLD, AND SHARE INFORMATION, AND I AM SO THRILLED THAT ANOTHER
FAMILY IS BENEFITING FROM THE VEPTR BOARD...
HOW IS EVERYTHING GOING FOR CELINA....IF YOU GET TIME, WE WOULD LOVE AN UPDATE....
HAPPY NEW YEAR TO YOU AND YOURS,
JOHANNA
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celina
Posted 2005-01-04 9:02 AM (#5676 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Posts: 160
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Location: Krunkel, near Bonn, Germany		Dear Johanna!

yes, you are right, it is so wonderful to come together all over this world! As I first found this board it was such a good feeling to be not alone. Now I found out, that we are not alone here in germany. Here are VEPTR-children,too! I am so glad. It is good to have contact in the own language, too. (Of course easier to explain what I feel and understand what was meant). But it´s also great to feel the interesting from my American friends! Yes, it is good to be here.
Celina is so good. Her first and last expansion has been in June and I can say from August on everything went upstairs. She became all her power back and her laughing. It is so good. I am so glad as her mother. Nothing is worser as not seeing your child laughing. So you can understand my emotions when I write, Celina is the child from before VEPTR-surgery. Now I am a little afraid of the new date: Her 2. expansion will be in two weeks. How will she do it? But I don´t have to explain it to you, these fear are not strange for you, am I right?
Everything went so good the last mounth. It was time for our familiy to take breath again. Sometimes we forgot all the hard times, it became such a matter of course, that everything went good. But it is not obvious. To be healthy together with your family is the greatest thing god can give us.

My best,

Chris
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josiejean
Posted 2005-01-04 10:25 AM (#5677 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Location: Silver Lake, Kansas		I had to laugh when i read your post Chris. Over hear when things are going well we say something like "things are looking up" or "it's all up hill from here"... so i got a laugh when you wrote that since August "everything went upstairs" i assume you mean the same thing, that everything is going well. it was cute. (i wasn't making fun of you).

shawn
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celina
Posted 2005-01-04 11:30 AM (#5682 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Posts: 160
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Location: Krunkel, near Bonn, Germany		Hey shawn!

I guess I found in you a wonderful english-teacher, much better than my old teacher "Mr. Pohle", his only sentence all the time was "Christiane, one good point for you!" or "bad point" from case to case. And it makes me happy when you can laugh about what I write. Better than I would make you cry. And now you know how we would say it in german, so we can learn from each other! So from now on I hope my english will go all up hill from here (??????) Right? Well, over hear, is it exactly what you meant? I over hear with my ears, don´t I!


Chris
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Nicki, Alex's Mom
Posted 2005-01-04 11:46 AM (#5687 - in reply to #5682)
Subject: Re: Irgendwer aus Deutschland?



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Location: Fort Wayne, IN

HAHAHAHA,   Shawn, she's right.  You said over hear when you should have said over here.  Too funny

Good catch, Chris!  You made me laugh over here! 

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Carmell
Posted 2005-01-04 1:15 PM (#5689 - in reply to #5687)
Subject: Re: Irgendwer aus Deutschland?



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Location: Utah

Chris,

I'm so happy to hear Celina is doing well!  That is news we all like to hear.  Good luck with her next expansion surgery in two weeks.  I hope everything goes very smooth and there are no complications.  Emotionally, its always hard on us parents.  But we will make it through!  I promise.  Keep us posted.  Good to see you again!

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josiejean
Posted 2005-01-04 1:40 PM (#5693 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Location: Silver Lake, Kansas		well actuallyi had a brain fart anyway. if things are going well then it's all DOWNHILL - not UPhill...geesh. come one Carmen, i figured you'd be there to correct me i'm glad i could make you laugh as well Chris!!

shawn

Edited by josiejean 2005-01-04 1:43 PM
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Carmell
Posted 2005-01-04 3:42 PM (#5697 - in reply to #5693)
Subject: Re: Irgendwer aus Deutschland?



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Location: Utah

  Hmm... I'm wondering if Shawn is talking about me... I don't know a "Carmen" on this board, so I guess I'm the closest...
:rolleyes:

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Zoes Nana
Posted 2005-01-04 3:58 PM (#5699 - in reply to #5697)
Subject: Re: Irgendwer aus Deutschland?



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Location: Plymouth, Pennsylvania		DEAR CHRIS,

WONDERFUL TO HEAR THAT THINGS ARE WELL, AND I CAN CERTAINLY UNDERSTAND YOUR
ANXIETY ABOUT THE UPCOMING EXPANSION....WE WILL BE PRAYING FOR A SPEEDY RECOVERY
FOR CELINA, AND I AM SO THRILLED YOU HAVE MADE A CONTACT OVER THERE....
IS THE FAMILY CLOSE TO WHERE YOU LIVE?

I MUST COMPLIMENT YOU ON, YOUR ABILITY TO CONVERSE IN GERMAN AND ENGLISH....
I WISH I WOULD HAVE PAID MORE ATTENTION IN SCHOOL TO LEARNING OTHER LANGUAGES...I KNOW
ESPECIALLY WHEN WE ARE IN BOSTON, SO MANY PEOPLE COMING TO THE MANY WONDERFUL HOSPITALS UP
THERE FROM ALL OVER THE WORLD...MANY TIMES WE ARE IN THE ELEVATORS WITH 3 COUNTRIES REPRESENTED...
THE BOSTON CHILDRENS HOSPITAL, HAS ENTERPERTAURS IN 7 LANGUAGES (I THINK ITS 7)

GREAT TO HEAR FROM YOU....
SINCERELY, JOHANNA

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josiejean
Posted 2005-01-04 5:35 PM (#5702 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Location: Silver Lake, Kansas		alright fine. let's just bash on Shawn why don't we!?!?!!?!?!?!? when i was typing your name. my deepest apologies. now i'm also going to have to explain to Chris what a brain fart is...

shawn
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celina
Posted 2005-01-05 5:50 AM (#5728 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Posts: 160
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Location: Krunkel, near Bonn, Germany		O.K. shawn, please tell me!
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josiejean
Posted 2005-01-05 11:08 AM (#5734 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



Elite Veteran

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Location: Silver Lake, Kansas		have you heard of "writer's block" Chris?... the inability of people who write books (and other pieces of literature) to think of something to write. a brain fart is similar in that it is a temporary loss of thinking and you do something dumb or say something dumb. obviously this is not a "real" condition... just soemthing to say when you do something stupid.

okay Carmell, do you have a better definition that you would like to share with the group?

shawn

Edited by josiejean 2005-01-05 11:11 AM
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celina
Posted 2005-01-05 11:20 AM (#5735 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Posts: 160
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Location: Krunkel, near Bonn, Germany		Dear Johanna!

yes, it´s so good I found them. As I wrote before it´s of course easier for me to converse in my mother language, but I am happy for learning english, from my child days on I´ve loved this language. It sounds good. And it opens the door to many other people in the world. That´s fascinating for me. The new family don´t live in the near of our village, but that´s o.k. We can call by phone and have contact by email. And it is always good not to feel alone. To have someone you can talk to. Particulary in medicin words it is very hard to understand everything in the strange language. So for example you say PICU and I guess you mean "intensiv station", as we would say here. But as I told shawn I love to learn!!!

I whish you and all your family all the best.

chris
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celina
Posted 2005-01-05 11:33 AM (#5736 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



Veteran

Posts: 160
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Location: Krunkel, near Bonn, Germany		Hi Carmell!!!

Please help!!!! After shawns explination I understand less than before. Maybe,Shawn, I should ask "Mr Pohle?"...:D

Please can you try to explain me, what a brain fart is. Or anywho else who like to!

(In my dictionary a fart is a thing that comes out of ...mhmhmh!)
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Carmell
Posted 2005-01-05 12:17 PM (#5737 - in reply to #5736)
Subject: Re: Irgendwer aus Deutschland?



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Location: Utah

:D:D:D:D   I'm laughing too hard to think straight.  Shawn has quite a way with words.  In his not-so-eloquant way, he was trying to say that his brain shut down temporarily making him unable to form the words/phrases he needed to get his point across.  A brain fart is just that - a "burp" in your brain when you can't think of the word/phrase/sentence you need to complete a conversation.  Shawn is fun to tease.  Chris, you are doing a great job of helping that along!  Take care and big hugs to Celina - hopefully this has eased a bit of the tension at your place prior to her upcoming surgery.  I know I'm laughing, still, so that's good.  Keep us posted!!! 

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Zoes Nana
Posted 2005-01-05 1:06 PM (#5739 - in reply to #5736)
Subject: Re: Irgendwer aus Deutschland?



Expert

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Location: Plymouth, Pennsylvania		HEY CELINA, LOL

DON'T FEEL BAD...
I AM 50 PLUS AND I HAVE NEVER HEARD THAT EXPRESSION UNTIL YOU DID...LOL...

IN OUR HOME, AS A CHILD AND NOW, "FART" IS CONCIDERED THE 4 LETTER "F WORD"...LOL...
I HAVE ALWAYS THOUGHT IS VULGAR, AND IT WAS FORBIDDEN...

BELIEVE ME, WHEN I TELL YOU, I HAVE LIGHTENED UP THRU THE YEARS....LOL....

GOD BLESS,
JOHANNA
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Hannah's Mom
Posted 2005-01-05 11:34 PM (#5749 - in reply to #3996)
Subject: Re: Irgendwer aus Deutschland?



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Location: Springfield, Mo.		So glad to hear that Celina is doing so well and we will be praying for her next surgery in a couple of weeks.
Take care,
Tammy
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