Nkhani ya Zoe ya Kukhalitsa ndi Khungu la Fyrosis

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Pezani Zoe

Zoe Ose ndi msungwana wamng'ono wokondeka ndi kumwetulira kokondweretsa ndi maso akulu, okongola omwe akukulira ndi chilakolako, chisangalalo, ndi kusalakwa kwa mwana yemwe akuyamba kupeza zodabwitsa za dziko lozungulira iye. Zoe ndi msungwana wamng'ono amakhala ndi cystic fibrosis (CF) , matenda omwe amachititsa kuti mwanayo asasamalire ndipo amamuopseza moyo womwe amamukonda kwambiri.

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Nkhani ya Zoe

Makolo a Zoe, Scott ndi Jada Ose, anayamba kuyamba kukayikira kuti Zoe ndi zolakwika pamene sanakhalenso wolemera m'masabata ake awiri oyambirira. Zoe potsiriza anafika kulemera kwa kubadwa kwake pamene anali ndi miyezi iwiri, koma Scott ndi Jada adadziwa kuti chinachake chinali cholakwika. Nthawi iliyonse Zoe amadya, mimba yake ikanakhala yovuta ndipo imakhala yofufumuka, ndipo iye amalira ndikumva kupweteka mpaka zomwe zimawoneka ngati chirichonse chimene adadya chidabwera kachiwiri mu nsalu yake.

Pa miyezi 10 yoyambirira ya Zoe, Scott ndi Jada adayendera maofesi ambiri ku ofesi ya ana kuti akambirane za nkhawa zawo. Pamene adokotala analibe yankho la zofooka za Zoe, Scott ndi Jada anafufuza okha ndipo anayamba kukayikira kuti Zoe akhoza kukhala ndi cystic fibrosis. Katswiri wawo wa ana sanagwirizane ndi mavuto awo, choncho Scott ndi Jada anatenga Zoe kuchipatala cha ana chifukwa chachiwiri. Ali kumeneko, tsiku loyamba Zoe atasintha 1, zifukwa zawo zatsimikiziridwa. Zoe analidi ndi cystic fibrosis.

Zoe anayamba kulandira chithandizo pa CF Care Center yovomerezeka. Tsopano, ali ndi zaka zinayi, akukula kuti azisangalala ndi 80th percentile pa chart chart. Moyo siwophweka, ndipo iye akulimbanabe ndi mavuto nthawi ndi nthawi, koma ndi kugwira ntchito mwakhama, Zoe ikukula ndi kuchita bwino.

Zoe atapezeka , ana ena asanu ndi awiri onse anayesedwa. Ana awiri, omwe ndi ana a Jada ndi ana a Scott, amakhalanso ndi cystic fibrosis. Iwo ali ndi kusintha kochepa kwambiri kuposa Zoe, ndipo mwamwayi, muli ndi zizindikiro zochepa chabe za matendawa.

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Nthawi ya Chae ya Zoe

Pamene adayamba kupeza kuti, Zoe anali ndi chubu chodyetsa m'mphuno mwake chomwe chinkagwiritsidwa ntchito kudyetsa ndondomeko yapamwamba m'mimba mwake ndi kumuthandiza kukula mofulumira. Scott ndi Jada amakumbukira kuti iwo sanagone mofulumira miyezi itatu yomwe Zoe anali ndi feedings - poopa kuti chubuyo ikatuluke kapena kuyendetsa Zoe pamene iye anali atagona. Anakhala pafupi naye usiku wonse kuti atsimikizire kuti Zoe ali ndi dontho lamtengo wapatali la zakudya zomwe amafunikira.

Tsopano Zoe amadya zakudya zamagulu nthawi zonse koma ayenera kudya zambiri zambiri, zakudya zamtengo wapatali. Scott ndi Jada akunena kuti izi zingakhale zovuta kukwaniritsa pamene mukuchita ndi njala yazaka 4. Mofanana ndi anthu ambiri omwe ali ndi cystic fibrosis, Zoe imatenganso mavitamini pamene adya.

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Tsiku Loyamba la Zoe ndi Banja Lake

Zoe imatenga mankhwala otchedwa bronchodilator ndi mankhwala ena omwe amawalembera omwe ali ndi CF. Zoe ndi Jada ayenera kupeza nthawi yokhala ndi mankhwala osokoneza bongo komanso mankhwala ochotsera maulendo angapo tsiku lililonse. Nthaŵi zina Zoe amagwiritsa ntchito chovala chapamwamba cha chifuwa chapamwamba pamtunda, ndipo nthawi zina Scott kapena Jada amapanga chifuwa cha thupi . Pamene Jada sakupereka mankhwala kwa Zoe, ali wotanganidwa kusamalira abale ndi alongo ake a Zoe omwe amaphunzitsanso mabanja.

Scott amathera nthawi yochuluka pamsewu, pamene amayendetsa makilomita pafupifupi 150 kukagwira ntchito tsiku ndi tsiku komanso makilomita 150 kubwerera kwawo kuti akakhale ndi Zoe, Jada ndi banja lonse la Ose madzulo aliwonse. Scott ayenera kupanga ulendo uwu chifukwa abwana ake (ku Savannah) amapereka inshuwalansi ya Zoe. Banja liyenera kukhala ku Jacksonville, ngakhale kuti likhale pafupi ndi CF, kumene Zoe ayenera kupita kuchipatala.

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Malangizo a Scott ndi Jada

Kupyolera mwa zochitika zawo komanso kuona zomwe zinachitikira ena, Scott ndi Jada adaphunzira zambiri za kubala mwana yemwe ali ndi cystic fibrosis. Iwo amapereka mawu otsatirawa a nzeru kwa makolo ena pazochitika zawo:

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Yesetsani Kutsata Ndondomeko ya Chithandizo

Scott akuti, "Chinthu chofunikira kwambiri chomwe kholo lirilonse lingakhoze kuchita ndicho kulangizidwa mokwanira kuti ukhalebe pa tsiku linalake. Izi ndizoyenera! Mwana yemwe ali ndi CF ayenera kukhala wathanzi momwe angathere. Mwa ichi, ndikutanthauza zonse zomwe amafunikira: mavitamini awo, mankhwala, kupuma kwawo ndi chifuwa chawo (CPT). "

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Lembani Zonse, Tsiku Lililonse

Pezani bukhu kapena machitidwe ena kuti musunge zolemba tsiku ndi tsiku zochitika zofunika. Scott ndi Jada analemba nthawi, kuchuluka kwa dzina komanso mankhwala a mankhwala onse omwe Zoe amatenga tsiku lililonse. Amapezanso zakudya zomwe amadya, michere yomwe anapatsidwa ndikudziwitsanso kukula kwake, mtundu wake, kusinthasintha kwake, komanso nthawi zambiri. Amalemba zizindikiro zilizonse zosiyana ndi Zoe, ndipo amabweretsa nawo zonsezi pamene akuwona timu ya CF. Scott ndi Jada akunena kuti zolemba izi zimapereka kuzindikira kofunikira kuti zithandizire kudziwa chomwe chimayambitsa mavuto akadzauka.

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Kumbukirani kuti Uzisamalire Wekha Monga Mwana Wanu

Muyenera kukhala olimba mokwanira kuti mupirire kuvutika maganizo, zakuthupi ndi zachuma posamalira mwana wodwala matenda aakulu. Muyeneranso kukhala olimba mokwanira kuti mukwaniritse zosowa za ana anu a thanzi.

Scott ndi Jada ali ndi banja lalikulu, choncho ayeneranso kupanga malingaliro, kupeza njira zowonetsera nthawi yawo pakati pa zokambirana za Zoe ndi zosowa za ana ena onse. Amalangiza makolo kuti agwirizane ndi gulu lothandizira kapena makanema ndi makolo ena a ana omwe ali ndi CF.

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Musamaope Kufunsa Ophatikiza Thandizo Lanu la Thanzi

Scott ndi Jada akugogomezera kuti, pamene kuli koyenera kukhulupirira madokotala anu ndi anamwino, nkofunikanso kukumbukira kuti akhoza kulakwa kapena kulakwitsa. Khalani maso, ndipo ngati chinachake sichikuwoneka choyenera kwa inu, tchulani. Mukudziwa kuti zochita za mwana wanu zili bwino kuposa aliyense.

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Mtsitsi wa Kafukufuku wa Cystic Fibrosis

Scott ndi Jada amakhulupirira kuti kuwonjezeranso kuzindikira ndi kuthandizira kufufuza kwa CF ndi zinthu zofunika kwambiri zomwe angachite monga makolo kuthandizira mwana wawo wamtsogolo. Iwo akhala akugwira ntchito mwakhama polimbikitsa zosowa za iwo omwe ali ndi CF ku bungwe lalamulo, kuwuza nkhani yawo kuonjezera chidziwitso cha anthu ndi kuthandizira Cystic Fibrosis Foundation pochita nawo zochitika zothandizira ndalama ndi masewera.