{"id":291,"date":"2015-03-29T17:10:39","date_gmt":"2015-03-29T15:10:39","guid":{"rendered":"http:\/\/www.zivotsesyndromem.cz\/?p=291"},"modified":"2015-03-29T17:10:39","modified_gmt":"2015-03-29T15:10:39","slug":"kika-gs-sk","status":"publish","type":"post","link":"https:\/\/www.zivotsesyndromem.cz\/?p=291","title":{"rendered":"Kika – GS (SK)"},"content":{"rendered":"

Vol\u00e1m sa <\/span><\/span>Beata<\/span><\/span><\/strong>, b\u00fdvame na Slovensku a tento pr\u00edspevok by som nenazvala \u017eivotopisom \u2013 sk\u00f4r pr\u00edbehom, preto\u017ee ho p\u00ed\u0161em v\u00a0mene svojej dc\u00e9rky <\/span><\/span>Krist\u00ednky<\/span><\/span><\/strong>, ktor\u00e1 sa narodila 18.12.2003 s\u00a0diagn\u00f3zou <\/span><\/span>Goldenharov syndr\u00f3m<\/span><\/span><\/strong> : m\u00e1 postihnut\u00fa prav\u00fa stranu tv\u00e1re \u2013asymetria, ch\u00fdba jej prav\u00e9 u\u0161ko – nepo\u010duje na\u0148 a\u00a0nem\u00e1 ani prav\u00fa o\u010dn\u00fa bu\u013evu a m\u00e1 skoli\u00f3zu chrbtice. Je to moje 2. die\u0165a, m\u00e1m e\u0161te zdrav\u00e9ho syna Dominika.<\/span><\/span><\/p>\n

V\u00a0\u010dase gravidity som netu\u0161ila, \u017ee by nie\u010do nemalo by\u0165 v\u00a0poriadku, absolvovala som be\u017en\u00e9 vy\u0161etrenia krvi a\u00a0ultrazvuk. Jej narodenie s\u00a0postihnut\u00edm bolo prekvapen\u00edm tak pre lek\u00e1rov, ako i\u00a0pre n\u00e1s. Neprekonala som \u017eiadne ochorenie a\u00a0mala som bezprobl\u00e9mov\u00e9 tehotenstvo. Dodnes nevieme \u010do to sp\u00f4sobilo.<\/span><\/p>\n

Tieto chv\u00edle ur\u010dite neboli \u013eahk\u00e9 a\u00a0ja by som ich bez pomoci mojich najbli\u017e\u0161\u00edch \u2013 man\u017eel, syn, rodi\u010dia a cel\u00e1 rodina a\u00a0na\u0161i priatelia, nezvl\u00e1dla. Dlho som sa s\u00a0t\u00fdm nemohla vyrovna\u0165 a\u00a0tr\u00e1pilo ma mno\u017estvo ot\u00e1zok. S\u00a0odstupom \u010dasu som na ne prestala h\u013eada\u0165 odpovede a\u00a0venovala som sa tomu, ako jej pom\u00f4c\u0165. Nechcem sa venova\u0165 sebe, ale moja ve\u013ek\u00e1 v\u010faka patr\u00ed hlavne m\u00f4jmu man\u017eelovi, ktor\u00fd Krist\u00ednku prijal \u00faplne od za\u010diatku ke\u010f ju uvidel v\u00a0inkub\u00e1tore a\u00a0ona mu stisla prst. Vytvorilo sa medzi nimi zvl\u00e1\u0161tne puto, ktor\u00e9 st\u00e1le trv\u00e1 a\u00a0on na \u0148u ned\u00e1 dopusti\u0165. Potvrdili sa aj slov\u00e1 mojej najlep\u0161ej kamar\u00e1tky Mi\u0161ky : \u201eKr\u00e1sne je v\u0161etko, na \u010do sa pozer\u00e1me s\u00a0l\u00e1skou\u201c<\/span><\/p>\n

M\u0148a si Krist\u00ednka z\u00edskala svojim \u00fasmevom a\u00a0t\u00fdm, \u017ee napriek v\u0161etk\u00e9mu je to roztomil\u00e9, citliv\u00e9 a\u00a0\u0161ikovn\u00e9 diev\u010datko a\u00a0m\u00e1me ju v\u0161etci radi. Chod\u00ed rada do \u0161k\u00f4lky, m\u00e1 tam svoje kamar\u00e1tky a\u00a0sny ako ka\u017ed\u00e1 in\u00e1. Jasn\u00e9, \u017ee sa p\u00fdta pre\u010do je in\u00e1 ako ostatn\u00e9 deti\u010dky a\u00a0sna\u017e\u00edme sa jej vysvetli\u0165, \u017ee sa tak narodila. P\u00fata pozornos\u0165, preto\u017ee je in\u00e1, ale tak ako aj pr\u00edbehy ostatn\u00fdch sle\u010dien na tejto str\u00e1nke poukazuj\u00fa na to, \u017ee ke\u010f je \u010dlovek obklopen\u00ed spr\u00e1vnymi \u013eu\u010fmi, vie sa povznies\u0165 nad svoje postihnutie a\u00a0\u017ei\u0165 \u0161\u0165astn\u00fd \u017eivot. Tak to je asi snom ka\u017ed\u00e9ho rodi\u010da, aby jeho die\u0165a bolo v \u017eivote \u0161\u0165astn\u00e9.<\/span><\/p>\n

Krist\u00ednka m\u00e1 za sebou nieko\u013eko nark\u00f3z, ktor\u00e9 mali napom\u00f4c\u0165 zlep\u0161eniu jej v\u00fdzoru. Tak\u017ee teraz sa povenujem trochu tej odbornej str\u00e1nke : <\/span><\/span><\/p>\n

Najviac ma tr\u00e1pi asi to, \u017ee jej ch\u00fdba jedna o\u010dn\u00e1 bu\u013eva a k\u00f4li tomuto u\u017e mala nieko\u013eko oper\u00e1ci\u00ed aj ke\u010f nie s ve\u013emi ve\u013ek\u00fdm \u00faspechom, ale predsa (2 ne\u00faspe\u0161n\u00e9 v Bratislave, potom nieko\u013eko v Prahe – Motol – Doc. Koz\u00e1k – nepodarilo sa da\u0165 prot\u00e9zu do m\u00e4kk\u00fdch tkan\u00edv, ktor\u00e9 mali by\u0165 roz\u0161\u00edren\u00e9 expanderom – \u010dasto sa jej to zap\u00e1lilo a expander musel nieko\u013ekokr\u00e1t pred\u010dasne von, v\u0161etko v nark\u00f3ze aj CT vy\u0161etrenie, lebo bola malink\u00e1 – tak\u017ee celkom m\u00e1me „na konte“ 12 nark\u00f3z) To \u010do sa podarilo bolo vlastne vlo\u017eenie silik\u00f3nu do orbity za m\u00e4kk\u00fdmi tkanivami ch\u00fdbaj\u00faceho o\u010dka, tak\u017ee ten priestor nie je tak moc prepadnut\u00fd. O\u010dn\u00e1 bu\u013eva tam nie je a vie\u010dka sa daj\u00fa m\u00e1linko otvori\u0165, orbita – ten kostn\u00fd otvor je tam o hodne men\u0161\u00ed ako u zdrav\u00e9ho oka, tak\u017ee preto je probl\u00e9m \u010doko\u013evek tam napcha\u0165 (doc. jej prakticky pok\u00fasil sa roz\u0161\u00edri\u0165 ten otvor, sekol jej kos\u0165 pri oku a vlo\u017eili tam expander, ktor\u00fd nas\u00e1val tekutinu a ako keby robil miesto, potom ten expander vybrali a vlo\u017eili jej tam silik\u00f3n- ktor\u00fd je tam dodnes) <\/span><\/span><\/p>\n

– v kosti sa to teda trocha podarilo, ale s m\u00e4kk\u00fdmi tkanivami vie\u010dok to ne\u0161lo, bu\u010f sa to zap\u00e1lilo a muselo to \u00eds\u0165 pred\u010dasne von, a aj ke\u010f tam expander vydr\u017eal mesiac – spravil celkom pekn\u00e9 miesto, po jeho vybrat\u00ed sa to ve\u013emi r\u00fdchlo zregenerovalo a prot\u00e9zu tam vlo\u017ei\u0165 ne\u0161lo (neviem je to dos\u0165 \u0165a\u017ek\u00e9, asi sa pok\u00fasime a\u017e v dospelosti – sama neviem, \u010do by bolo lep\u0161ie, lebo zas aby tam civelo oko, ktor\u00e9 sa neh\u00fdbe a hen\u010f na prv\u00fd poh\u013ead vidie\u0165, \u017ee je to prot\u00e9za – to tie\u017e nie je \u017eiadna v\u00fdhra)<\/span><\/p>\n

– u\u0161ko je v p\u00f4vodnom stave, tak\u00e9 mali\u010dk\u00e9, len doc. odstr\u00e1nil v\u00fdrastky, ktor\u00e9 pred n\u00edm boli, na tejto strane je to zarasten\u00e9 a nie je tam vn\u00fatri zvukovod<\/span><\/p>\n

– viem, \u017ee sa u\u0161ko d\u00e1 plasticky upravi\u0165 v ur\u010ditom veku, ale to tie\u017e nie je len 1 z\u00e1krok a zv\u00e1\u017eime, \u010di sa na to odhodl\u00e1me, mo\u017eno len preto, aby jej dr\u017eali napr. okuliariky, keby chcela to ch\u00fdbaj\u00face o\u010dko maskova\u0165 (my sme si na to mal\u00e9 u\u0161ko zvykli a neprek\u00e1\u017ea, m\u00e1me ho celkom radi \ud83d\ude42<\/span><\/p>\n

– so zdrav\u00fdm u\u0161kom sme teda tie\u017e mali probl\u00e9my, lebo po n\u00e1stupe do \u0161k\u00f4lky prekonala ve\u013ek\u00fd z\u00e1pa\u013e a nevedeli sme sa z toho vymota\u0165, vtedy nastalo aj zhor\u0161enie sluchu, ale u\u017e sme z toho h\u00e1dam vonku a celkom si vysta\u010d\u00edme aj s t\u00fdm jedn\u00fdm – samozrejme ke\u010f je zdrav\u00e9<\/span><\/p>\n

– ned\u00e1vno sme jej dali n\u00e1u\u0161nice – bola to jej ve\u013ek\u00e1 t\u00fa\u017eba <\/span><\/span>\uf04a<\/span><\/span><\/span><\/p>\n

Teraz v\u00a0marci 2009 sme zrovna p\u00e1r dn\u00ed pred z\u00e1krokom, a\u00a0to pred\u013a\u017eenie m\u00e1lo vyvinut\u00e9ho ramena \u010de\u013eustnej kosti, a\u00a0to bu\u010f distrakciou, alebo kostn\u00fdm \u0161tepom z\u00a0rebra. Rozhodne sa to a\u017e po aktu\u00e1lne vyhotovenom 3D CT. Mysl\u00edm, \u017ee oba sp\u00f4soby s\u00fa n\u00e1ro\u010dn\u00e9 a\u00a0m\u00e1me ve\u013ek\u00e9 obavy, ale berieme to ako \u0161ancu pribl\u00ed\u017ei\u0165 sa mal\u00fdm kr\u00f4\u010dkom mo\u017eno k\u00a0lep\u0161iemu v\u00fdrazu Krist\u00ednkinej tv\u00e1ri\u010dky. Pova\u017eujeme to za dos\u0165 d\u00f4le\u017eit\u00fa zmenu, aj ke\u010f \u0161anca na \u00faspech nie je ist\u00e1. D\u00f4verujeme v\u0161ak Doc. Koz\u00e1kovi a\u00a0vieme, \u017ee sme v\u00a0dobr\u00fdch ruk\u00e1ch.<\/span><\/p>\n

To\u013eko z\u00a0toho odborn\u00e9ho h\u013eadiska. \u010co by som V\u00e1m e\u0161te o\u00a0Krist\u00ednke nap\u00edsala? Je to \u00fa\u017easn\u00e9 die\u0165a pln\u00e9 l\u00e1sky, mal\u00e9 pohybliv\u00e9 \u0161idielko <\/span><\/span>\uf04a<\/span><\/span><\/span> Bola ve\u013emi \u017eiv\u00fdm b\u00e1b\u00e4tkom, nikdy neobsedela. Teraz je to u\u017e lep\u0161ie, bavia ju p\u00edsmenk\u00e1 a\u00a0kreslenie, strihanie a\u00a0je \u013eav\u00e1\u010dka. <\/span><\/span><\/p>\n

Mo\u017eno o\u00a0p\u00e1r rokov sem ona sama nap\u00ed\u0161e svoj poh\u013ead na svet, a\u00a0to aj asi presved\u010divej\u0161ie, ako pocity matky. <\/span><\/p>\n

Predsalen by som pridala p\u00e1r slov \u010dlenov svojej rodiny, tak tu s\u00fa ich vlastnoru\u010dne p\u00edsan\u00e9 postrehy o\u00a0nej : <\/span><\/p>\n

P\u00ed\u0161e<\/span><\/span> Dominik<\/span><\/span><\/strong>\u00a0\u00a0<\/span><\/span>Krist\u00ednka je moja sestri\u010dka, mam ju velmi rad a\u00a0je to snof super- ke\u010f sa jasime mno… a\u00a0tie nase tajnosti to je nieco uzasne…s Kristinkou je velka haluz… a\u00a0velmi sa tesim ked u\u017e vyrastie … To je odo mna asi v\u0161etko ..ahojteeeeeeeeeeeeee <\/span><\/span>\uf04a<\/span><\/span><\/span>\u00a0<\/span><\/span><\/em><\/p>\n

P\u00ed\u0161e <\/span><\/span>Tata<\/span><\/span>: <\/span><\/span><\/strong>Krist\u00ednka je moja princezn\u00e1 a\u00a0nikdy by som ju nevymenil za in\u00fa <\/span><\/span>\uf04a<\/span><\/span><\/span>\u00a0<\/span><\/span><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

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