tag:blogger.com,1999:blog-84910282301402681342024-03-05T11:01:37.191+01:00beim Letzten wird alles anders - Kyra, ihr Weg ins Leben----- Charge-Syndrom ----- Hyperplastisch Rechtsherzsyndrom ------
Lippen-Kiefer-Gaumen Spalte -----saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.comBlogger126125tag:blogger.com,1999:blog-8491028230140268134.post-61773375185889839152019-09-27T16:40:00.002+02:002019-09-27T16:40:31.842+02:00Lea Amy und Jamie die Schwestern von Kyra<br />
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-29880163023617655002019-06-15T18:33:00.000+02:002019-06-15T18:33:35.311+02:00Kyra's Geburstagsgeschenk für MorgenHallo Alle miteinander,<br />
Entschuldige das ich mich in den letzten Monaten nicht gemeldet habe.<br />
Ich hatte so viel um die Ohren wegen der Schule das ich den Blog völlig vergessen habe. Aber ich möchte jetzt wieder öfters was berichten für euch da ich nicht mehr so viel mit der Schule habe. Ich habe Heute was für Kyra genäht.<br />
Es ist ihr Geburtstagsgeschenk da Sie morgen Geburtstag hat. Sie wird morgen 9 Jahre alt.<br />
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Naja das war's eigentlich schon für heute...<br />
Viele liebe Grüße<br />
Amy<br />
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Lea Amy Frankenberghttp://www.blogger.com/profile/05660241882668821632noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-48330494023125050352018-11-25T18:14:00.001+01:002018-11-25T18:16:46.635+01:00Kyra`s neuer RollstuhlHallo,<br />
Heute mache ich mein ersten Post in Kyra`s Blog.<br />
Heute geht es um Kyra´s neuen Rollstuhl den sie gleich "zum Fressen gern hat".<br />
Kaum passt man kurz nicht auf zerpflückt sie schon den Schaumstoff.<br />
Leider wird sie den Rollstuhl nicht so oft nutzen können,weil die Behörde es nicht geschafft hat die Papiere von der Krankenkasse zu bearbeiten und nun hat sie keinen Pflegedienst mehr und damit auch keine Schulbegleitung für die Schule und kann nicht mehr in die Schule gehen.<br />
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Hier ein Video von Kyra und ihrem neuen Rollstuhl ;-)<br />
Tschüss bis nächsten Sonntag!<br />
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<br />Lea Amy Frankenberghttp://www.blogger.com/profile/05660241882668821632noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-23040230033108517452018-11-17T12:38:00.000+01:002018-11-17T13:07:57.686+01:00Lea Frankenberg :-)<div class="separator" style="clear: both; text-align: left;">
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Ab heute möchte die Große Schwester im Blog mit machen.<br />
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Da ich leider zu Wenig Zeit habe, Ich freue mich das Sie mit macht,</div>
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und ihr wieder Aktuelle Beiträge von Kyra bekommt.</div>
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und hier ein Kleines Video vom Essens Training in der Schule.</div>
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-84743666293195670682017-10-07T18:31:00.000+02:002017-10-07T18:31:43.793+02:00Kyra und VR Brille<br />
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Kyra fährt Achterbahn mit VR Brille.</div>
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-35814359598106034472016-10-06T19:56:00.002+02:002016-10-06T19:56:44.622+02:00Charge Ich bin wie Du<br />
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<a href="https://vimeo.com/185768199">Charge Ich bin wie Du</a> from <a href="https://vimeo.com/user23712087">Claudia Junghans</a> on <a href="https://vimeo.com/">Vimeo</a>.<br />
<br />saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-91925520485332103042015-10-17T17:50:00.001+02:002015-10-17T17:50:32.067+02:00Kyra Aufnahme zur PEG IISo Kyra hat die OP gut überstanden,<br />
Sie War die 24 Stunden sehr Schmerz geplagt.<br />
Aber heute geht es ihr sehr gut, wollte freiwillig aus dm Bett.<br />
Und hatte keine schmerzen mehr.<br />
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So das wir wohl Montag nach Hause können,<br />
Das Sondieren klapp auch hervorragend und alles ohne schmerzen.<br />
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Kyra ist auch Tante geworden ihre Große Schwester hat heute ein Mädchen zur Welt<br />
Gebracht.<br />
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<span id="goog_1699300533"></span><span id="goog_1699300534"></span><br />saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-40015653244904428422015-10-15T22:35:00.004+02:002015-10-15T22:35:55.077+02:00Aufnahme UKE zur PEGHeute war Aufnahme im UKE,<br />
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EKG und Herzecho klappten sehr gut mit Kyra,<br />
Narkose Gespräch war auch gut,<br />
Bloß das Blut abnahmen bzw. den Zugang legen war für Kyra<br />
Horror. Anschließend wollte Kyra nur noch nach hause aber<br />
Sie brauch erst eine neue PEG.<br />
Die ja Morgen gelegt wird.<br />
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So den Rest gibt es Morgensaretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-3293615431627165132015-09-01T21:12:00.003+02:002015-09-01T21:12:33.330+02:00Kyra Reha Buggy, Winter Vorbereitungen II<iframe allowfullscreen="" frameborder="0" height="344" src="https://www.youtube.com/embed/veA2bK9i7ow" width="459"></iframe>saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-23291856335247100382015-09-01T21:12:00.001+02:002015-09-01T21:12:04.863+02:00Kyra Reha Buggy, Winter Vorbereitungen I<iframe allowfullscreen="" frameborder="0" height="344" src="https://www.youtube.com/embed/HOvobjZ-Tnw" width="459"></iframe>saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-41586636071989727622015-08-14T19:47:00.002+02:002015-08-14T20:53:55.782+02:00Update IIISo sind immer noch im Krankenhaus. Kyra geht es schlechter ihre entzündungs Werte sind wieder Rauf Ihre Nahrung wurde wieder abgesetzt. Sind für Heute an einer Bauch OP vorbei geschlittert. Alles weitere werden wir Morgen sehn.<br />
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<span style="color: white;">Ina Frankenberg: </span></div>
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<span style="color: white;">Kyra hat noch Pilz im Bauchraum bekommen </span></div>
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<span style="color: white;">und nun wird geschaut ob das Antibiotika gegen</span></div>
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<span style="color: white;">Pilz wirkt und wenn nicht müssen Sie doch nochmal</span></div>
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<span style="color: white;">den Bauch aufmachen.</span></div>
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<br /><span style="color: white;"></span>saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-55042200755663381872015-08-11T09:50:00.000+02:002015-08-14T20:46:55.101+02:00Update II vom 11.08.15<div>
11.08.15<br /><br />So Kyra geht es besser, Sie hat noch Fieber aber, <br />
ZVK ist Raus, Sonde aus dem Mund ist raus, <br />
die Nasalesonde liegt, Tee und Wasser verträgt sie auch. <br />
Jetzt müssen wir nur noch mit dem Essen</div>
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Anfangen dann kommen wie hier bestimmt bald raus.</div>
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-1009509595689733782015-08-05T09:45:00.000+02:002015-08-14T20:44:34.600+02:00Update vom 03.08.201505.08.15<br /><br />Kyra liegt noch auf Intensiv, Braucht auch noch Sauerstoff,<br />ist aber erstmal Übernberg. und Sie hat noch groß Schmerzen.<span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;"><br /></span>
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-27995279558852608432015-08-03T10:35:00.005+02:002015-08-14T20:08:15.778+02:00Kyra im UKE !!!<br />Kyra ist seit Gestern Abend im UKE mit unerklärlichen Schmerzen im Bauchraum,<br />Da ja Kyra´s PEG ein gewachsen ist (Buried-Bumper-Syndrom) vermuten wir<br />das dort Irgendwas nicht mit OK ist,<br />zur zeit Wartet Mama drauf das ein Ultraschall von Bauchraum gemacht wird und wir<br />wissen wie es weiter geht.<br />es kann sein das Sie die OP zum PEG wechsel vorziehen müsse,<br />
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<tr><td class="tr-caption" style="text-align: center;">Kyra im UKE</td></tr>
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-61952727019451524942015-07-31T21:53:00.003+02:002015-07-31T22:32:13.453+02:00wiedersehn macht freude, tatkräftig e.v. <a href="http://tatkraeftig.org/blog/2015/07/29/wiedersehen-macht-freude/">http://tatkraeftig.org/blog/2015/07/29/wiedersehen-macht-freude/</a><br />
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-63294567382755816452015-06-22T12:51:00.000+02:002015-06-22T12:51:02.323+02:00Essenstraining mit Kyra<div class="separator" style="clear: both; text-align: center;">
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<br />saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-26685327858716256342015-06-14T15:21:00.000+02:002015-06-14T15:21:10.930+02:00Abschluss Grillen mit Tatkräftig e.v Am 12.06.15 hat wir nochmal Tatkräftig e.v bei uns im Garten zum Grillen,<br />
und zur Einweihung der Sandkiste,<br />
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Wir möchten uns allen nochmal bedanken :-)<br />
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<a href="https://goo.gl/photos/X56xSNfkzHC4XE559" rel="nofollow">https://goo.gl/photos/X56xSNfkzHC4XE559</a><br />
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-20909373220203096152015-06-06T16:18:00.001+02:002015-06-06T19:30:19.217+02:00Kyra und ihr Walker<div class="separator" style="clear: both; text-align: center;">
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Kyra Rockt den Frosch</div>
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Kyra schaukelt mit Lea</div>
saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-63843305280651893522014-10-05T20:34:00.000+02:002014-10-06T15:19:51.010+02:00Hilfe von Tatkräftig e.V. Am Mittwoch den 01.10.2014 hat wir ganz viele Helfer ein unseren Schrebergarten,
<br />
Der Verein <a href="https://tatkraeftig.org/" target="_blank">tatkräftig e.V.</a> kam mit 10 Helfern um unseren Garten wieder auf vorder man<br />
zubringen, das was wir nie alleine geschafft hätten,<br />
<br />
Und möchten uns auf diesen weg bei euch allen bedanken,<br />
<br />
Wie ist die Sache denn ins rollen gekommen, die <a href="https://www.sternenbruecke.de/ambulant.html" target="_blank">Ambulante Sozialpädagogische Familienhilfe</a><br />
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der <a href="https://www.sternenbruecke.de/" target="_blank">Sternenbrücke</a> hat uns dort auch unterstützt, und hat den Kontakt Hergestellt,<br />
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aber seht selber ....<br />
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<a href="http://www.ndr.de/fernsehen/sendungen/rund_um_den_michel/Hilfesuchende-treffen-Helfer,rundumdenmichel1368.html" target="_blank">rund um den Michel, Hilfesuchende treffen Helfer</a></div>
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-72788836314840298492014-09-27T11:38:00.000+02:002014-09-27T11:38:03.012+02:00Ein Zitat von van Dijk
"Eine Person mit mehrfacher Sinnesbehinderung ist ein einzigartiger Mensch mit einer einzigartigen Entwicklungsrichtung,
der zu einer Gruppe behinderter Menschen gehört, die wie keine andere darauf angewiesen ist,
dass die Fachleute bereit sind, dies zu akzeptieren und entsprechend zu handeln", (van Dijk, 2001).
saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-74138307096064161792014-07-02T09:04:00.003+02:002014-07-09T13:35:27.365+02:00Auf zur CHARGE Konferenz nach Oberwesel<span style="font-family: inherit;">So Morgen geht es los, zur <span style="background-color: black; color: white; font-size: 14px; line-height: 19.31999969482422px;">CHARGE <a href="http://www.charge-syndrom.de/index.php/termine-treffen/" target="_blank">Konferenz</a> <span style="font-family: inherit;">nach Oberwesel,</span></span></span><br />
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<span style="font-size: 14px; line-height: 19.31999969482422px;">Lucas muß zu Hause bleiben da er letzten Freitag eine </span><span style="font-size: 14px; line-height: 19.31999969482422px;">Nasennebenhöhlen OP hatte,</span></span><br />
<span style="background-color: black; color: white; font-family: inherit; font-size: 14px; line-height: 19.31999969482422px;">Lea wollte Lieber bei ihrem Onkel bleiben, so das nur Jamie und Kyra mit kommen,</span><br />
<span style="background-color: black; color: white; font-family: inherit; font-size: 14px; line-height: 19.31999969482422px;">wir freuen uns alle drauf...</span><br />
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-36618436794767690762014-06-16T06:45:00.002+02:002014-07-09T13:35:59.823+02:00Heute wird Kyra 4 Jahre AltLiebe Kyra alles Gute zum deinem 4 Geburtstag,<br />
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Jamie, Lea, Lucas, Mama und Papa.<br />
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-2995968731450709672014-03-12T11:17:00.001+01:002014-07-09T13:33:22.906+02:00Urlaub mit Kyra in der SternbrückeSeit Samstag sind wir mit Kyra und Lea und Jamie, in der Sternbrücke<br />
Kyra gefällt es hier sehr gut und Lea und Jamie sind auch schwer begeistert,<br />
da sie ein Eigenes Zimmer haben, und sind jede menge Quatsch machen<br />
können ohne das jemand Mecker, und sie wach bleiben können solange<br />
sie wollen. Mama und Papa genießen es auch sehr...<br />
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Kyra geht es auch von Tag zu Tag besser, so das man sagen kann ganz Langsam<br />
wird Sie wieder die Alte so wie Sie vor der OP war.<br />
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hier noch ein paar Bilder.....<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqlikjpE9o5w6ySVGTqY91aCfK739YJ5VI7q-asrr_piRY-WZYfyL4RONQDm4n7PZpjzGPlgaqdO4NUG7ODnjo446bfhy9Clzi07rn_v49osjwPExwusyuSnBwN0_HoPU4cBVUwNqO2QJe/s1600/20140312_103217.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqlikjpE9o5w6ySVGTqY91aCfK739YJ5VI7q-asrr_piRY-WZYfyL4RONQDm4n7PZpjzGPlgaqdO4NUG7ODnjo446bfhy9Clzi07rn_v49osjwPExwusyuSnBwN0_HoPU4cBVUwNqO2QJe/s1600/20140312_103217.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Das haben Mama und Papa in der Steinwerkstadt gebastelt,<br />
eine Vogel Tränke für unsern Garten </td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Erstes Frühstück in der Sternbrücke </td></tr>
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saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-1174780645335197962014-02-17T20:24:00.001+01:002014-02-17T20:24:21.824+01:00Kyra im Fernsehn mit dem Pflegedienst Balu<a href="http://www.ndr.de/fernsehen/sendungen/hamburg_journal/media/hamj32405.html">http://www.ndr.de/fernsehen/sendungen/hamburg_journal/media/hamj32405.html</a>saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0tag:blogger.com,1999:blog-8491028230140268134.post-15020103229984446632014-02-17T19:28:00.002+01:002014-03-17T22:30:00.229+01:00Kyra Herz OP Tag 14So mal wieder was Neues von Kyra.<br />
Kyra war die Letzten Tag nicht wirklich gut drauf,<br />
obwohl der Mittwoch letzter Woche Eigentlich sehr gut war,<br />
aber dann kamen die Bauch weh, so das ab Donnerstag nichts mehr ging.<br />
Freitag wurde den Endlich der ZVK gezogen, ( Zentraler Venen Katheter )<br />
wo den auch noch ein Infekt dazu kam, der aber jetzt schon am abklingen ist.<br />
<br />
Freitag haben wir unser Marcumar Schulung gehabt so das wir den INR Wert<br />
zu Hause messen können, und das Marcumar selber anpassen dürfen/Können,<br />
da Kyra ein bestimmten Zeil bereich haben muß.<br />
<br />
Kyra ihre Sättigung soll jetzt bei 92 % liegen, zur Zeit Brauch sie auch noch Sauerstoff,<br />
damit sie sie erreicht,<br />
<br />
Ich Denke das wir nicht vor Freitag nach Hause dürfen,<br />
<br />
so nun noch ein Paar Bilder von Kyra, Heute war ein Toller Tag für Kyra das Sie Langsam<br />
wieder ins Sitzen Kommt, und<br />
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<tr><td class="tr-caption" style="text-align: center;">Kyra heute morgen, mit viel Wasser im Gesicht</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoz_sUk905FGBFqxa2wROTNoiNSRGEu_9WLFpJVKbQ6bHGlSQMPTO99MTqz79MQnOd973B92kMsyz-adIJCx60mUcm6U7i9V2LkXTTvPi673D-7c340ifndjB9T3rho-xLi2SN7zI1jw6M/s1600/20140224_115432.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhoz_sUk905FGBFqxa2wROTNoiNSRGEu_9WLFpJVKbQ6bHGlSQMPTO99MTqz79MQnOd973B92kMsyz-adIJCx60mUcm6U7i9V2LkXTTvPi673D-7c340ifndjB9T3rho-xLi2SN7zI1jw6M/s1600/20140224_115432.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kyra´s Herzschrittmacher</td></tr>
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<br />saretashttp://www.blogger.com/profile/17381735480533088246noreply@blogger.com0