{"id":702,"date":"2020-02-29T21:38:01","date_gmt":"2020-02-29T21:38:01","guid":{"rendered":"http:\/\/www.prader-willi.ro\/?p=702"},"modified":"2020-02-29T22:50:54","modified_gmt":"2020-02-29T22:50:54","slug":"inainte-si-dupa-stefan-i","status":"publish","type":"post","link":"https:\/\/www.prader-willi.ro\/index.php\/2020\/02\/29\/inainte-si-dupa-stefan-i\/","title":{"rendered":"\u00ceNAINTE \u0218I DUP\u0102 \u0218TEFAN (I)"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Capitolul I (RO)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Povestea noastr\u0103 este una simpl\u0103 \u0219i, totu\u0219i, rar\u0103.<br>Voi fi eu povestitorul (Georgian), nu pentru c\u0103 a\u0219 \u0219ti mai multe (nicidecum), nici pentru c\u0103 a\u0219 povesti mai bine (nici asta), ci pentru c\u0103 vreau s\u0103 iau asupra mea m\u0103car aceast\u0103 povar\u0103.<br>Am fost doi oameni, un cuplu, care au tr\u0103it o via\u021b\u0103 frumoas\u0103 \u0219i suficient\u0103, dar f\u0103r\u0103 a avea o \u201econtinuare&#8221;. La un moment dat, \u00een al nou\u0103lea an de convie\u021buire, so\u021bia mi-a f\u0103cut cea mai mare surpriz\u0103 \u0219i m-a anun\u021bat c\u0103 Mo\u0219 Nicolae chiar iube\u0219te copiii. Am fost nemaipomenit de bucuros \u0219i un pic ne\u00eencrez\u0103tor. Apoi, sarcina a decurs u\u0219or, iar noi ne g\u00e2ndeam c\u0103 nu am apucat s\u0103 \u201emarc\u0103m&#8221; etapele, \u00eens\u0103, vom avea timp s\u0103 ne bucur\u0103m de tot ce va \u00eensemna un copil.<br>Au existat emo\u021bii la na\u0219tere, dar care s-au transformat \u00een nelini\u0219te, odat\u0103 cu semnalarea unui simptom \u0219i a c\u00e2torva indicii: am aflat c\u0103 sufer\u0103 de hipotonie (tonus muscular foarte sc\u0103zut) \u0219i are ceva caracteristici proprii unui sindrom genetic. Echipa sec\u021biei de neonatologie a avut inspira\u021bia \u0219i nepl\u0103cuta misiune de a ne anun\u021ba c\u0103 exist\u0103 o problem\u0103 cu \u0218tefan-Nicolae (un nume ales cu drag) \u0219i poate fi vorba despre sindrom Prader-Willi, Angelman sau chiar amiotrofie spinal\u0103 (ve\u021bi g\u0103si pe www.prader-willi.ro articolul \u015ftiin\u021bific). Bine\u00een\u021beles c\u0103 am c\u0103utat pe internet \u0219i, dup\u0103 analize \u0219i compara\u021bii, am ajuns s\u0103 cred c\u0103 este vorba despre Prader-Willi (PWS), dup\u0103 cum \u0219i intui\u021bia doctori\u021belor.<\/p>\n\n\n\n<div class=\"wp-block-group\"><div class=\"wp-block-group__inner-container is-layout-flow wp-block-group-is-layout-flow\">\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"532\" height=\"946\" src=\"https:\/\/www.prader-willi.ro\/wp-content\/uploads\/2020\/02\/20170811-2.jpg\" alt=\"\" class=\"wp-image-735\" srcset=\"https:\/\/www.prader-willi.ro\/wp-content\/uploads\/2020\/02\/20170811-2.jpg 532w, https:\/\/www.prader-willi.ro\/wp-content\/uploads\/2020\/02\/20170811-2-169x300.jpg 169w\" sizes=\"auto, (max-width: 532px) 100vw, 532px\" \/><\/figure>\n<\/div><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">Atunci am avut primul moment de revolt\u0103 \u00eempotriva sor\u021bii, prima dezn\u0103dejde. Nici nu-mi imaginam ce sim\u021bea Monica, so\u021bia mea, probabil de sute de ori mai mult, mai tare dec\u00e2t mine. O \u00eencercare pe care n-am \u00een\u021beles-o \u0219i pe care n-o voi \u00een\u021belege niciodat\u0103.<br>Am a\u0219teptat cu team\u0103 \u0219i frustrare s\u0103-i v\u0103d ajun\u0219i acas\u0103 (dup\u0103 dou\u0103 s\u0103pt\u0103m\u00e2ni). Atunci au \u00eenceput zile \u0219i nop\u021bi de trud\u0103 cu biberonul. Am \u00eencercat sonda NG doar de vreo dou\u0103 ori (eu am avut curajul, ca \u0219i mai t\u00e2rziu cu injec\u021bia). \u021aineam un carne\u021bel cu cantitatea de lapte pe care i-l d\u0103deam ca s\u0103 men\u021binem un minim nutritiv. \u0218i au ap\u0103rut metode de \u201emotivare&#8221; a pl\u0103p\u00e2ndului bebelu\u0219 de a r\u0103m\u00e2ne treaz \u0219i a avea puterea de a suge.<br>\u0218ti\u021bi c\u00e2nd anume \u201eb\u0103ie\u021bii pl\u00e2ng c\u00e2teodat\u0103&#8221;? Atunci c\u00e2nd se simt neputincio\u0219i, de\u0219i ei ar trebui s\u0103 fie cei puternici. De altfel, de pu\u021bine ori ne-am l\u0103sat prad\u0103 sl\u0103biciunilor p\u00e2n\u0103 acum, dar sunt momente \u00een care devenim vulnerabili, invidio\u015fi \u0219i singuri.<br>Detalii tehnice: \u00eei d\u0103deam s\u0103 m\u0103n\u00e2nce la fiecare 3 ore c\u00e2t putea s\u0103 ia, \u00eencep\u00e2nd cu 15 ml \u0219i ajung\u00e2nd p\u00e2n\u0103 la 30-40 ml \u00eentr-o or\u0103, apoi a mai crescut cantitatea, dup\u0103 vreo 2-3 luni de via\u021b\u0103. Monica avea grij\u0103 de el de la orele 6 p\u00e2n\u0103 la orele 21, eu aveam doar orele 0 \u0219i 3. \u00cemi amintesc doar lumina becurilor \u00een ochii micu\u021bului \u0219i b\u0103tutul \u00een biberon.<br>Acum abia ne mai amintim acele zile \u0219i nop\u021bi de chin \u0219i nedormit (psihostress). \u00cen tot acest timp a fost mai mult inert. A fost o p\u0103pu\u0219\u0103 (\u201ede c\u00e2rp\u0103&#8221;) micu\u021b\u0103 \u0219i sl\u0103bu\u021b\u0103 p\u00e2n\u0103 pe la v\u00e2rsta de 6 luni, c\u00e2nd ne-a mai dat Cel de sus un \u201eflash&#8221; &#8211; l-am luat cu noi \u00een pat \u00eentr-o noapte \u0219i, de unul singur \u0219i cu mare efort, s-a \u00eentors c\u0103tre fiecare dintre noi s\u0103 ne \u00eembr\u0103\u021bi\u0219eze. A fost prima dat\u0103 c\u00e2nd s-a \u00eentors de pe o parte pe alta, rostogolirea voluntar\u0103 ca achizi\u021bie motric\u0103 fiind abia peste alte dou\u0103 luni. Primele lui mi\u0219c\u0103ri, prima lui declara\u021bie de dragoste.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/www.prader-willi.ro\/wp-content\/uploads\/2020\/02\/20180225.jpg\" alt=\"\" class=\"wp-image-738\" width=\"615\" height=\"820\" srcset=\"https:\/\/www.prader-willi.ro\/wp-content\/uploads\/2020\/02\/20180225.jpg 615w, https:\/\/www.prader-willi.ro\/wp-content\/uploads\/2020\/02\/20180225-225x300.jpg 225w\" sizes=\"auto, (max-width: 615px) 100vw, 615px\" \/><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>Capitolul I (RO) Povestea noastr\u0103 este una simpl\u0103 \u0219i, totu\u0219i, rar\u0103.Voi fi eu povestitorul (Georgian), nu pentru c\u0103 a\u0219 \u0219ti mai multe (nicidecum), nici pentru c\u0103 a\u0219 povesti mai bine (nici asta),<a class=\"moretag\" href=\"https:\/\/www.prader-willi.ro\/index.php\/2020\/02\/29\/inainte-si-dupa-stefan-i\/\">Read More&#8230;<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-702","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/posts\/702","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/comments?post=702"}],"version-history":[{"count":14,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/posts\/702\/revisions"}],"predecessor-version":[{"id":739,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/posts\/702\/revisions\/739"}],"wp:attachment":[{"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/media?parent=702"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/categories?post=702"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.prader-willi.ro\/index.php\/wp-json\/wp\/v2\/tags?post=702"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}