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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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| 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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Location: Silver Lake, Kansas | okay, you lost me after "hallo" 
shawn |
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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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Location: Krunkel, near Bonn, Germany | Hello shawn!
What did you meen with "You lost me after Hallo"? |
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Veteran
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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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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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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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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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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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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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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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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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Posts: 3243
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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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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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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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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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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Location: Krunkel, near Bonn, Germany | O.K. shawn, please tell me! |
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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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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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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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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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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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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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Location: SanAntonio TX(formerly Hammond Indiana) | oka ya'lllll.....( and I only started saying ya';ll when we moved to texas so there!!)
the ONLY german i remember from hugh school is somehting like this... Kauenden Gummi ist dem Klassenzimmer verboten it means that chewing in class isnt allowed, or literally translated "chewing gum in classroom forbidden" tells ya'll wahtt *I* was doing most of my time in gertman class eh??? this whole thread has me cracking up!!! |
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Location: Silver Lake, Kansas | Sorry to confuse you more, Chris. and of course, thanks Carmell for coming to the rescue....
shawn |
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Location: Krunkel, near Bonn, Germany | When I came to the board and I read a german sentence, I was so surprised. Did you have german lessons in America? It would really interest me!
Right we would write:
"Kauen von Kaugummi ist im Klassenzimmer verboten!"
(That´s a very important sentence!)
Great to have german sentences on the german side.
Es wuenscht euch allen eine gute Nacht
Chris  |
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Location: Krunkel, near Bonn, Germany | No problem, shawn!
You meant it good to me!
Tomorrow I will make a trip to Berlin (yeah, I´m so happy) with a friend of mine to visit there a friend from UK, so I have to speak english...oh god, speaking is much more bad than writing. Pray for me that Hillary will understand me...
See you later alligator...
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Posts: 3970
Location: Plymouth, Pennsylvania | DEAR CELINA,
DURING ZOES MANY STAYS IN BOSTON IN REGARDS TO HER "TITANIUM RIBS" WE MET A DOCTOR
WHO WAS FROM BERLIN.....HE ALSO WROTE AND CO-WROTE, AN EARLIER PAPER AND REPORT IN REGARDS
TO THE VEPTR...IT IS ON THE VEPTR SITE HERE SOMEWHERE, BUT I CAN'T SEEM TO AT THE MINUTE FIND IT....
BUT I WILL HAVE ARLENE
LOOK AND SEND YOU THE SIGHT...
HIS NAME IS DR. KAI-UWE LEWANDROWSKI...HE WAS A PART OF ZOES CARE IN THE EARLIER YEARS....
AND HE IS A BRILLIANT AND WELL WRITTEN DR...AND I AM NOT SURE BUT I THINK HE IS BACK IN GERMANY...
I THOUGHT YOU MIGHT FIND SOME OF HIS READINGS INTERESTING IN REGARDS TO THE SPINE....
SINCERELY,
JOHANNA |
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Location: Silver Lake, Kansas | have fun in Berlin.
after while crocodile,
shawn |
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Location: Springfield, Mo. | As Shawn said we hope you have fun on your outing to Berlin.
Tammy  |
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| This whole link makes me laugh. I read it before I go to bed at night because it puts a smile on my face. When Shawn first wrote "you lost me after hello", I laughed out loud. Chris, I admire the fact that you can communicate in english so well. I used to know french, but that is long gone without any practice. It seems that if you keep corresponding with this gang you will learn all sorts of new english terms. I even learned some new "slang" myself from reading this thread! Have a great time in Berlin.
Tonya |
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Location: Krunkel, near Bonn, Germany | Hello guys!
You all made a big big big smile on my face. I had so much fun with writing all the funny things! It shows that we can have fun and laugh together all over the world. I love to come to this board and meet all the fantastic people, it makes my heart flying like a cloud!
Just some hours and I will start my trip to Berlin. It´s so amazing for me. And I am looking forward monday when I can look back into the VEPTR board.
I wish you all a wonderful time as well.
LOL
Chris
P.S. Johanna, thanks so much, you are lovely! |
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Location: Silver Lake, Kansas | o.k. errate ich, dass es Zeit für mich ist, um auf dem Spass auch hineinzugelangen. Aber ich habe deutsche Lehren nie genommen. Es ist die Schönheit des Internets mein Freund!
Shawn
translation...
okay, i guess it is time for me to get in on the fun too. But i have never taken German lessons. It's the beauty of the internet my friend!
Shawn |
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Elite Veteran
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Location: SanAntonio TX(formerly Hammond Indiana) | Hey Shawn, es handelt von Zeit ya hat erhalten in auf allen Späßendandys!! Es kann sein viel Spaß, mit einander in einer anderen Sprache zu sprechen! Und, es stimmen soll benutzen einen Online-Übersetzer zu. Wenn ich ein kleines (oder vielleicht viel!) zusätzliche Hilfe brauche, benutze ich www.freetranslation.com..... Gehen Sie für es Dandy! Nicht nur macht es hilft uns in unserem Lernprozess, es wirklich kann machen andere fühlen gemütlicher, in ihrer Muttersprache sich zu unterhalten. Nur übersetzen remeber, einige Dinge sehr gut, einige nicht übersetzen wirklich fremd, und andere übersetzen überhaupt nicht. Es ist, wie Sie, dass Sie schreiben denken, und übersetzt etwas, aber wenn es erscheint, es NICHT ist, was Sie erwartet haben!, das, und Übersetzer machen online nicht eine Rechtschreibungskontrolle, damit vorsichtig ist!! Lassen Sie uns, die alle eine große, erfreuliche Lernenerfahrung haben! Und, ich verspreche, werde ich Sie ein dork nicht rufen, oder werde den Begriff "gebratene Hundefürze" auf Deutsch benutzen, dass meine Oma immer so zärtlich von Erzählen uns war, die war, was für Hauptmahlzeit ist, wenn wir endlos sie nerven würden!! Lieben Sie ya alle, sehr lieb. Jennie English..... Hey Shawn,
it's about time ya got in on all the fun dude!!! It can be a lot of fun to talk to each other in another language! And, it's okay to use an online translator. When I need a little ( or maybe a lot!) extra help, I use www.freetranslation.com.....
Go for it dude!
Not only does it help us in our learning process, it can really make others feel more comfortable to converse in their native language.
Just remeber, some things do not translate very well, some translate really strange, and others do not translate at all.! It's like you think you are writing and translating something, but when it comes up, it is NOT what you expected!, that, and translators online don't do a spell check, so be careful!!!
Let's all have a great, enjoyable learning experience!!
and, I promise, I won't call you a dork, or use the term "fried dog farts" in german, that my Grandma always was so fond of telling us that was what is for dinner, when we'd endlessly bug her!!!
Love ya all, very dearly.
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Location: Silver Lake, Kansas | Gebratenen Hund furzt... FOTFLOL!!! i'll have to remember that next time the kids ask.
shawn |
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Location: SanAntonio TX(formerly Hammond Indiana) | |
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Location: Krunkel, near Bonn, Germany |
Hallo Jennie!
Ich muß sooooo lachen. Den Ausdruck "Gebratene Hundefürze" habe ich noch nie gehört. Woher kannte deine Großmutter ihn? Siehst du, auch ich kann hier noch neue deutsche Ausdrücke lernen, ist das nicht toll? Es macht solchen Spaß, deine Mitteilungen zu lesen, manche deiner Sätze sind komplett richtig!!! Hervorragend!!! Andere sind ein bischen verdreht, aber alles in allem eine super gute Leistung. Ich bin wirklich fasziniert. Es ist schön, daß einer der ersten deutschen Sätze, die ich von Shawn gelesen habe: "Gebratner Hund furzt" ist. Gute deutsche Konversation!
Ja, es ist schön, Leute verschiedener Sprachen zu treffen. Es macht so viel Spaß. In Berlin habe ich dieses Wochenende gelernt: cheese=schmalzig, countrybumkin=Bauerntrampel.Und ein Wort für kitschig, fällt mir aber im Moment nicht ein.
Du hast geschrieben, daß du gerne mehr von Celina wissen magst. Magst du es, wenn ich dir ein wenig von ihrem Leben erzähle? Wärst du interessiert???
Hello Jennie!
I have to laugh so much! I have never heard the expression "Grilled dogsfarts". Where did your grandma learn it? You see, I can learn here german sentences, too. Its such a fun to read your messages, some of your sentences are completly right!!! Great!!! Some are a bit different, but in fact it is a great achivement (right?, or would you say performance in that case???) I am really fascinated! Its nice, that one of the first of german sentences, I read from shawn was: " a Grilled dog farts". Good german conversation! Yes, it is nice to meet people with different languages. It is so much fun. In Berlin I have learned this weekend: "cheese=schmalzi", "countrybumkin=Bauerntrampel" And one word for kitschig, I can´t remember.
You wrote you´d like to knew somthing more from Celina. Would you be interested when I tell you something of her life?
Love ya all!!!
Chris |
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Location: Krunkel, near Bonn, Germany | Dear shawn!
Good to have you here in the fun. I am fascinatet about your real good conversation: " Gebratener Hund furzt!" Das mußt du wirklich schnell deinen Kinder lehren!  From where did you get your ability to say such good german though you never choose it in school?
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Location: Krunkel, near Bonn, Germany | hALLO jENNIE!
iCH WAR GERADE AUF DEINEM LINK UM ES ZU VERSUCHEN. Sie schrieben, daß 48 Wörter 39 $ kosten sollen. Das ist sehr, sehr teuer!!! Warum nennt es sich "free-translation.com"?
Love,CHris |
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Location: Silver Lake, Kansas | Celina...
nein, ich unterrichtete es schnell zu meinen Kindern nicht oder lernte es schnell für mich selbst. ich gebrauche eine On-line-Website, die übersetzen wird, was Sie auf Englisch in Deutsche schreiben. Sie können auch in deutschen Wörtern tippen und es ins Englisch übersetzen lassen.
so hoffe ich, dass ich Sie nicht enttäuschte. ich habe wirklich keine Sachkenntnis im Schreiben oder sprechenden Deutschen. ich ließ das Internet die ganze Arbeit für mich tun. Aber es ist noch nett im Stande zu sein, mit Ihnen auf Deutsch zu sprechen, da das für Sie dieser Weg leicht ist.
shawn |
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Location: Krunkel, near Bonn, Germany | |
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Location: Silver Lake, Kansas | |
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Location: Silver Lake, Kansas | Hey Celina, try this site. I am not sure which website that you were looking on that cost money to use. This is the website i have been using to write in German...
http://translation2.paralink.com/
shawn |
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Location: Krunkel, near Bonn, Germany | No, it doesn´t work, or I am stupid. |
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Location: Silver Lake, Kansas | i clicked on the link after i posted that message and it worked for me, so i don't know what is up...
shawn |
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Location: SanAntonio TX(formerly Hammond Indiana) | Zij zal misschien klikken op "menselijke vertaling" in plaats van "bevrijdt vertaling" of "vertaalt nu" Ik deed dat aan eerst en het brengt op een knal-op dat noden zoals 40 mannetjesdier amerikaanse geld. .... Chris- klik op "bevrijdt vertaling"
she might be clicking on "human translation" instead of "free translation" or "translate now"
I did that at first, and it brings up a pop-up that wants like 40 bucks american money..... Chris- click on "free translation" |
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Location: Krunkel, near Bonn, Germany | Hello Jennie!
Good to have you back here!!! I hope everything is o.k.!!!
What is that for a language??? Is it Netherlands???
Chirs  |
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Location: SanAntonio TX(formerly Hammond Indiana) | it was supposed to be german......Now, i am confused. i was tired, so i didnt feel like going through my brain contents, so i just typed it all into the translator and copied and pasted it here........but I am guessing that isn't what happened since you asked me what language it was..........sorry bout that!! |
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Member
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| Hallo
Wir Leben in deutschland.
ich habe ein Sohn er Heist Soner ist 6 Jahre alt.
Er wird bald Periert mot VPTR .Es steht nur nicht fest wann wie wo?
wer auch die Kosten bezahlt. ob die Aok die Kosten übernimmt
M.f.G
Ertix |
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Posts: 3970
Location: Plymouth, Pennsylvania | WELCOME ERTIX!!
IT IS GREAT TO HAVE YOU HERE...AND THANKS FOR
POSTING THE PICTURES IN THE ALBUM...
I AM NOT SURE ABOUT YOUR ENGLISH, BUT I HAVE NO GERMAN, SORRY...
BUT WITH THE HELP OF SOME OF THE FOLKS HERE ON THE BOARD, I AM
SURE WE WILL DO JUST FINE...
GOD BLESS....
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Extreme Veteran
Posts: 395
| Hey Ertix, I do not know any German. I looked at the pictures of your children, they are all beautiful! IM appears to have scoliosis. I hope he is being evaluated or maybe already scheduled for the VEPTR. Hope you know someone who can translate this for you. Good luck with everything and let us know how IM is doing.
Elizabeth |
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Location: Springfield, Mo. | Thanks for posting the pictures you have a beautiful family. I don't know German but wanted to Welcome you to the site.
Tammy |
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Posts: 160
Location: Krunkel, near Bonn, Germany | Hallo Ertix!
Herzlich willkommen im VEPTR Forum! Toll, daß Sie die Seite hier gefunden haben, ich hoffe es wird Ihnen helfen, Antworten auf Ihre Fragen zu bekommen. Vielen Dank für die Fotos, die Sie ins Album geschickt haben, Sie sind eine wirklich tolle Familie! Soner ist ihr Sohn und soll demnächst opperiert werden mit der VEPTR-Methode, ist das richtig? Wie ich im Album lesen konnte, kommen Sie aus Regensburg, das ist in Bayern, richtig? Wir kommen aus einem kleinen Ort in Rheinland/Pfalz, irgendwo zwischen Köln und Frankfurt. Mein Name ist Christiane und ich habe eine 6 Jahre alte Tochter, Celina, und ihr wurden im Januar 2004 als erstes Kind in Deutschland 2 VEPTR-Stäbe implantiert. Celina war damals 4 Jahre alt. Nun ist die Implantation schon fast 2 Jahre vorbei und ich kann sagen, sie hat Celina sehr gut getan. Sie wächst jetzt schön gerade, hat kaum Probleme mit ihrem Rücken. 2 Mal wurden die Stäbe seitdem verlängert, und einmal, das war beim letzten Mal im Oktober diesen Jahres, wurde ein Stab gegen einen längeren ausgetauscht. Hat alles prima geklappt!!! So, jetzt erzählt doch mal ein wenig von euch, welche Landsmänner seid ihr, kommt ihr ursprünglich aus der Türkei? Egal, welche Fragen ihr habt, ich möchte euch gerne helfen, eure Fragen zu beantworten. Die Menschen dieses Forums haben mir auch schon oft mit meinen Fragen und Sorgen geholfen. Freue mich, von euch zu hören. Meine email Addresse ist [email protected]
Liebe Grüße,
Christiane Stopperich |
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Elite Veteran
Posts: 952
Location: SanAntonio TX(formerly Hammond Indiana) | this is from free transltion.
What Ertix wrote, sort of.
Hello we life in Germany. I have is a son he Heist Soner 6 years old. Does it become rented stands soon Periert VPTR. it only not firmly when like where? who also the costs pays. whether the aok of the costs receives |
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Veteran
Posts: 160
Location: Krunkel, near Bonn, Germany | Hi Jennie!
What did you write here? Is it a translation of Ertix words? Did he ever wrote back in the last weeks, I was not here a few weeks, so I don´t know. It´s sad he gives no answer, maybe I could help them.
Chris |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | CHRIS,
I HAVE BEEN PM'D BY ERTIX, AND AM WAITING FOR A REPLY IN ENGLISH...
I HAVE TRIED TO SEND THE OTHER FOR TRANSLATION BUT IT DID NOT GO THRU,
I WILL LET YOU KNOW WHEN I HEAR MORE....
IF YOU CAN PERHAPS YOU CAN SEND THEM A PM FROM HERE...
THANKS
JOHANNA |
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Veteran
Posts: 160
Location: Krunkel, near Bonn, Germany | Hello Johanna!
Today I checked out my emails and I found one from Ertix, they´ve sent me 2 days ago. I am so happy they sent me a message and I hope so much I can help them. All I can say is that they have a very hard situation. He needs help so badly but noone here wants to pay the surgery. It´s too bad. I am so in a rage. That´s not fair!!!! |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | CHRISTINA,
IF THERE IS ANYTHING WE CAN DO TO HELP FROM HERE, PLEASE LET ME
KNOW...
PERHAPS I CAN HAVE THEM GET IN TOUCH WITH THE INTERNATIONAL DEPT
AT THE BOSTON CHILDRENS HOSPITAL...THEY BRING CHILDREN FROM ALL
OVER THE WORLD...I AM NOT EXACTLY SURE HOW IT WORKS BUT I DO HAVE
THE NAME OF THE HEAD OF IT...WE WERE IN TOUCH ONE TIME BEFORE ABOUT
HELPING A CHILD....
PLEASE LET ME KNOW...
GOD BLESS, AND THANKS AGAIN...
JOHANNA |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | CHRIS,
I JUST HAD ANOTHER THOUGHT...
PERHAPS THE SHRINERS HOSPITALS THAT WE HAVE HERE IN THIS COUNTRY
MIGHT HELP...
THEY NOT ONLY HELP CHILDREN, BUT THERE IS NO COST...
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Veteran
Posts: 160
Location: Krunkel, near Bonn, Germany | That would be great. This family told me they need help so badly they would do this surgery everywhere. Could you give me a number from that DEPT from the Childrens Hospital? Or do you have an idea how they can contact them if they want?
About your 2. idea: Do they do this VEPTR-surgery there?
Edited by celina 2006-01-31 2:20 AM
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | CHRIS,
I WILL PULL ALLL THE INFORMATION TOGETHER, AND EMAIL YOU...
I ALSO ASK ANYONE ON THIS BOARD THAT HAS OR CAN GIVE US SOME
IDEA PLEASE FEEL FREE...
THIS IS A CHILD THAT IS IN DESPERATE NEED OF HELP...
I WILL EMAIL DR. EMANS WITH THIS INFORMATION, AND IF ANYONE ELSE
ON HERE CAN TALK WITH THEIR DOCTORS THAT WOULD BE GREAT...
IN THE MEAN TIME WE WILL TRY TO GET AS MUCH INFORMATION AS WE CAN...
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Veteran
Posts: 160
Location: Krunkel, near Bonn, Germany | Thank you so much, Jobey. You know you are wonderful, don´t ya?
Edited by celina 2006-01-31 9:32 AM
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | BUMPING THIS POST UP FOR TANYA....
THOUGHT YOU MIGHT FIND SOME OF THE INFORMATION IN THESE POST TO YOUR USE...
CELINA IS A CHILD THAT HAS HAD HER SURGERY IN GERMANY...ACTUALLY I THINK SHE WAS THE FIRST
ONE DONE AT THE HOSPITAL THEY CHOOSE...
CHRISTINA, IS ALWAYS AVAILABLE VIA EMAIL...THEY ARE A WONDERFUL AND VERY HELPFUL FAMILY..
GOD BLESS... |
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Member
Posts: 7
| Hallo an Alle
Leider hat es mit mein Op noch nicht geklappt.
Aok hat die Kostenzusage
für Veptr für Soner zum 2 ten male abgelehnt.
Wir wissen nicht mehr weiter
Er ist 6 hat Skoliose 126 grad.Und es wird immer schlimmer.
Direct Translation:
Hello at everyone
Unfortunately it not yet worked out with my Op.
Aok rejected the costs promise for Veptr for Soner to the 2 ten once.
We know no longer further
It is has 6 Skoliose 126 degrees and it becomes always more badly. |
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Member
Posts: 13
Location: Düsseldorf/Germany | Hallo!
Ich würde wenn nichts mehr geht damit an die Öffentlichkeit gehen!Auch würde ich mit Soner persönlich bei der AOK vorsprechen und live mit Soners Skoliose konsultieren!
Ich drücke euch die Daumen!In welcher Klinik soll er denn operiert werden?
Meine Tochter soll auch operiert werden,sie hat das Jarcho-Levin-Syndrom mit Skoliose!Wir sind aber zum Glück privat zusatzversichert für die Kinder!Redet den Leuten ein schlechtes Gewissen ein(Wegen Euch kann unser Sohn kein normales Leben führen obwohl das Problem durch eine Operation behoben werden kann)!!!!!!!
Lieben Gruß
Die Mutter von Lucy(Tanja) |
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Expert
Posts: 3970
Location: Plymouth, Pennsylvania | TANYA,
COULD YOU TELL US WHAT ERTIX IS SAYING?
I HAVE BEEN VERY WORRIED ABOUT HIM, AND HAVE TRIED
THRU MANY EFFORTS TO HELP THEM...
THANKS,
JOHANNA |
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Member
Posts: 7
| Hallo
Mein Soner wurde Dank Gottes, Hilfe und dank euere Informationen geholfen.
Ich habe mein Sohn nach Düsseldorf gebracht,zur Ortopadische Klinik Düsseldorf.
Sie haben zuerst ihm ein Hallo verpasst und ihm geschtreckt.
Letzte Woche dann Veptr Oparation.
Ihm geht es schon Wiel besser.
Ich werde bald seine bilder in Web Bringen.
Danke vor allem Zoes Nana
Und Celines mama
Und die Ärzte die ihm sehr gut gekümmert haben vor allem Dr Scharfstäte.
Danke am meiste an Gott
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Member
Posts: 7
| Hallo
Mein Soner wurde Dank Gottes, Hilfe und dank euere Informationen geholfen.
Ich habe mein Sohn nach Düsseldorf gebracht,zur Ortopadische Klinik Düsseldorf.
Sie haben zuerst ihm ein Hallo verpasst und ihm geschtreckt.
Letzte Woche dann Veptr Oparation.
Ihm geht es schon Wiel besser.
Ich werde bald seine bilder in Web Bringen.
Danke vor allem Zoes Nana
Und Celines mama
Und die Ärzte die ihm sehr gut gekümmert haben vor allem Dr Scharfstäte.
Danke am meiste an Gott
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Elite Veteran
Posts: 952
Location: SanAntonio TX(formerly Hammond Indiana) | This is what I got from Free Translation.com. It is NOT perfect, by any means. BUT, it gives us an idea of what he is saying up there!!! This is from the post right above this. Hello my Soner became thanks to God, aid and thanks to your information helped. I brought my son to Dusseldorf to the Ortopadische clinic Dusseldorf. They missed first it a hello and it geschtreckt. Last week then Veptr grandpa ration. It goes it already Wiel better. I will become soon its pictures in Web bringing. Thanks above all Zoes Nana and Celines mama and the physicians that it very well worried Scharfstäte above all de. Would thank most at God |
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Veteran
Posts: 160
Location: Krunkel, near Bonn, Germany | I´ll try to translate what Soners Dad wrote to us:
My son Soner get helped through God and your informations! I brought my son to the orthopadic-hospital in Duesseldorf, where he got a HALO placed. Last weak there was the VEPTR-Surgery. He is doing much better now. I will put some pictures of him in web soon. Big thanks to Zoes Nana and Celinas Mama. And big thanks to the docs who have been so good to him. Specially Dr. Scharfstaedt. But my biggest thanks to God!!!
I hope it is better to understand now!
Chris
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