{"id":1388,"date":"2015-07-11T18:01:00","date_gmt":"2015-07-11T16:01:00","guid":{"rendered":"http:\/\/www.zivotsesyndromem.cz\/?p=1388"},"modified":"2015-07-11T18:01:00","modified_gmt":"2015-07-11T16:01:00","slug":"emma-tcs-cz","status":"publish","type":"post","link":"https:\/\/www.zivotsesyndromem.cz\/?p=1388","title":{"rendered":"Emma – TCS (CZ)"},"content":{"rendered":"

Jmenuji se Kate\u0159ina Pyskat\u00e1 a s\u00a0dcerkou a p\u0159\u00edtelem \u017eijeme v\u00a0Lan\u017ehot\u011b, nejji\u017en\u011bj\u0161\u00edm m\u011bst\u011b Moravy. V roce 2013<\/strong> se n\u00e1m narodila Emma s\u00a0TCS<\/strong>. T\u011bhotenstv\u00ed prob\u00edhalo celkem v\u00a0pohod\u011b, jenom v\u00a0prvn\u00edm trimestru jsem m\u011bla opakovan\u011b vir\u00f3zy a nec\u00edtila jsem se nejl\u00edp. Ale potom u\u017e v\u0161e prob\u00edhalo bez probl\u00e9m\u016f, testy a v\u0161e v\u00a0pohod\u011b. Emma se v\u0161ak narodila p\u0159ed\u010dasn\u011b v\u00a032tt<\/strong>.Byl to \u0161ok. V\u00e1\u017eila 1230g a m\u011b\u0159ila 41cm<\/strong>. Nav\u00edc se zjevn\u00fdm posti\u017een\u00edm ve tv\u00e1\u0159i. P\u0159esn\u011b si pamatuji, jak m\u011b sest\u0159i\u010dka poprv\u00e9 p\u0159ivezla k\u00a0inkub\u00e1toru, abych se na malou mohla pod\u00edvat. Ned\u00e1 se to popsat, nav\u00edc n\u00e1m nikdo nedok\u00e1zal \u0159\u00edct, zda v\u016fbec bude \u017e\u00edt, proto\u017ee nemohla po\u0159\u00e1dn\u011b d\u00fdchat. \u010ctvrt\u00fd den po narozen\u00ed j\u00ed museli prov\u00e9st tracheostomii<\/strong>, proto\u017ee m\u011bla nepr\u016fchodn\u00e9 ob\u011b nosn\u00ed d\u00edrky. Asi za dal\u0161\u00edch 5 dn\u00ed n\u00e1m ozn\u00e1mili, ,\u017ee Emma vlivem p\u0159ed\u010dasn\u00e9ho porodu prod\u011blala krv\u00e1cen\u00ed do mozku<\/strong>. Byla to stra\u0161n\u00e1 bezmoc, strach, deprese, co v\u0161echno je\u0161t\u011b p\u0159ijde. Prvn\u00ed m\u011bs\u00edc byla vy\u017eivov\u00e1na sondou zavedenou p\u0159es pusu do \u017ealudku, nakonec j\u00ed museli ud\u011blat PEG<\/strong> (sonda p\u0159\u00edmo p\u0159es b\u0159\u00ed\u0161ko do \u017ealudku). Skoro t\u0159i m\u011bs\u00edce jsme le\u017eeli na JIPCE v\u00a0Brn\u011b. Potom p\u0159i\u0161lo nejt\u011b\u017e\u0161\u00ed rozhodnut\u00ed v\u00a0na\u0161em \u017eivot\u011b<\/strong>, vz\u00edt si Emmi\u010dku dom\u016f nebo ji d\u00e1t na p\u00e9\u010di do \u00fastavu. Zvolili jsme druhou mo\u017enost, ne proto \u017ee by jsme dceru necht\u011bli. Byl to hrozn\u00fd strach a bezmoc ,sice jsem si zkou\u0161ela ods\u00e1v\u00e1ni z\u00a0kanyly u\u017e v\u00a0Brn\u011b, ale pod dohledem sester. Za Emmi\u010dkou jsme pravideln\u011b jezdili 3x t\u00fddn\u011b a o v\u00edkendu jsem tam jezdila na cel\u00fd den. \u010c\u00edm v\u00edce \u010dasu jsem s\u00a0n\u00ed tr\u00e1vila a u\u010dila se o ni starat, t\u00edm to bylo t\u011b\u017e\u0161\u00ed od n\u00ed odj\u00ed\u017ed\u011bt. V d\u011btsk\u00e9m centru v\u00a0Kyjov\u011b<\/a><\/strong> byla Emma asi 5 m\u011bs\u00edc\u016f<\/strong> a za tu dobu skon\u010dila 2x se z\u00e1stavou dechu na JIPce. Moc jsem si p\u0159\u00e1la, aby Emmi\u010dka kone\u010dn\u011b byla u\u017e s\u00a0n\u00e1mi doma. Ods\u00e1v\u00e1n\u00ed u\u017e mi \u0161lo, krmen\u00ed do PEG-u taky, jen m\u011b je\u0161t\u011b \u010dekala (tehdy nejt\u011b\u017e\u0161\u00ed v\u011bc) nau\u010dit se m\u011bnit kanylu. Musela se m\u011bnit ka\u017ed\u00fd t\u00fdden a pokud by jsme to nezvl\u00e1dli, tak by jsme museli jezdit poka\u017ed\u00e9 do Brna, kde by n\u00e1m ji vym\u011bnili. Ale zvl\u00e1dli jsme to. A pak jsme si Emmi\u010dku kone\u010dn\u011b p\u0159ivezli dom\u016f. Ani dnes nev\u00edm, jak jsme zvl\u00e1dli v\u0161echno to vy\u0159izov\u00e1n\u00ed, neust\u00e1l\u00e9 je\u017ed\u011bn\u00ed do Brna do d\u011btsk\u00e9 nemocnice(byli jsme tam snad ka\u017ed\u00fd t\u00fdden). Do toho 4x denn\u011b cvi\u010dit \u201eVojtovku\u201c<\/strong> (proto\u017ee po krv\u00e1cen\u00ed do mozku byla ochrnut\u00e1). Na sluchadlo jsme taky \u010dekali stra\u0161n\u011b dlouho, a\u017e n\u00e1m pan\u00ed P\u0159\u00edhodov\u00e1 z\u00a0Aimy<\/strong><\/a>, co sluchadla dov\u00e1\u017e\u00ed, domluvila nejlep\u0161\u00edho pana doktora Havl\u00edka<\/strong><\/a>, tak pak to \u0161lo jako po m\u00e1sle :-). Emmi\u010dka se za\u010dala pomalu p\u0159et\u00e1\u010det na b\u0159\u00ed\u0161ko, potom lozit a dneska, ve 2 letech, \u00a0u\u017e kone\u010dn\u011b za\u010d\u00edn\u00e1me i chodit. Kdy\u017e si vzpomenu, \u017ee zazn\u011bli progn\u00f3zy typu: Mo\u017en\u00e1 bude n\u011bkdy sed\u011bt s\u00a0pomoc\u00ed opory<\/em> nebo mo\u017en\u00e1 by bylo pro ni lep\u0161\u00ed i ment\u00e1ln\u00ed posti\u017een\u00ed,<\/em> tak jsem dnes r\u00e1da,\u017ee se nic z\u00a0toho nevyplnilo. M\u00e1me trochu probl\u00e9my s\u00a0hybnost\u00ed levostrann\u00fdch kon\u010detin, ale jinak je Emma \u00fa\u017easn\u00e1 VELK\u00c1 bojovnice<\/strong>. Proto\u017ee m\u00e1 trach\u010du tak nemluv\u00ed, ale sluchadlo BAHA<\/a><\/strong> n\u00e1m stra\u0161n\u011b pomohlo, tak\u017ee te\u010f v\u0161emu rozum\u00ed a domlouv\u00e1me se pomoc\u00ed znakovky<\/strong>, kterou se pomalu u\u010d\u00edme.M\u00e1me za sebou u\u017e asi 7 operac\u00ed<\/strong> a je\u0161t\u011b n\u00e1s jich hodn\u011b \u010dek\u00e1, ale ty pokroky co Emmi\u010dka ud\u011blala jsou hnac\u00edm motorem. Te\u010f u\u017e v\u00edm, \u017ee a\u0165 byly za\u010d\u00e1tky jakkoli t\u011b\u017ek\u00e9, vyplatilo se bojovat. Je\u0161t\u011b bych cht\u011bla nakonec dodat, \u017ee v\u00a0za\u010d\u00e1tku, kdy jsem v\u00a0porodnici dostala l\u00edstek s\u00a0n\u00e1pisem Treacher Collins syndrom<\/strong><\/a> a pak za\u010dala hledat na netu o co se v\u016fbec jedn\u00e1, hrozn\u011b moc mi pomohla Evka Doj\u010darov\u00e1<\/strong><\/a> a jej\u00ed web. D\u00edky za tuto skupinu \u00fa\u017easn\u00fdch lid\u00ed \ud83d\ude42<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

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