{
 "id": 37004,
 "slug": "2019-06-24_seis-luna-ku-mcadd",
 "url": "https://agents.willem.com/pap/posts/2019-06-24_seis-luna-ku-mcadd/",
 "source_url": "https://willem.com/pap/2019-06-24_seis-luna-ku-mcadd/",
 "language": "pap",
 "date": "2019-06-24",
 "published": "2019-06-24T00:00:00+02:00",
 "created": "2025-06-26T22:10:12.662000+02:00",
 "updated": "2026-10-20T09:16:37.627000+02:00",
 "title": "Seis luna ku MCADD",
 "subtitle": "Pensamentu i konsèhu tokante vida di tur dia komo tata i mama",
 "summary": "Mañan ta seis luna ku nos yu hòmber a nasé, un bon momento pa reflekshoná riba e eksperensia di ta tata i mama di un yu ku MCADD. E kondishon metaboliko aki ta rekerí atenshon spesial riba e horario di kuminda i preparashon pa situashon ora kosnan no ta bai manera mester. Ta bon pa kompartí ku esaki a bira normal pa nos hopi lihé. Aki bo ta haña algun pensamentu i konsèhu.",
 "topics": [
  "daddy",
  "data",
  "health",
  "lifestyle",
  "mcadd"
 ],
 "author": {
  "name": "Willem L. Middelkoop",
  "url": "https://willem.com"
 },
 "provenance": {
  "kind": "model",
  "method": "Claude Sonnet, two passes (translation, then proofreading) against a glossary; Curaçao/Bonaire (FPI) spelling, no dictionary available",
  "date": "2026-10-20",
  "reviewed_by_native_reader": false,
  "language": "pap",
  "source_language": "en"
 },
 "translations": [
  {
   "language": "en",
   "title": "Six months with MCADD",
   "url": "https://agents.willem.com/en/posts/2019-06-24_six-months-with-mcadd/",
   "source_url": "https://willem.com/en/2019-06-24_six-months-with-mcadd/"
  },
  {
   "language": "nl",
   "title": "Zes maanden met MCADD",
   "url": "https://agents.willem.com/nl/posts/2019-06-24_zes-maanden-met-mcadd/",
   "source_url": "https://willem.com/nl/2019-06-24_zes-maanden-met-mcadd/"
  },
  {
   "language": "de",
   "title": "Sechs Monate mit MCADD",
   "url": "https://agents.willem.com/de/posts/2019-06-24_sechs-monate-mit-mcadd/",
   "source_url": "https://willem.com/de/2019-06-24_sechs-monate-mit-mcadd/"
  },
  {
   "language": "es",
   "title": "Seis meses con MCADD",
   "url": "https://agents.willem.com/es/posts/2019-06-24_seis-meses-con-mcadd/",
   "source_url": "https://willem.com/es/2019-06-24_seis-meses-con-mcadd/"
  },
  {
   "language": "fr",
   "title": "Six mois avec le MCADD",
   "url": "https://agents.willem.com/fr/posts/2019-06-24_six-mois-avec-le-mcadd/",
   "source_url": "https://willem.com/fr/2019-06-24_six-mois-avec-le-mcadd/"
  },
  {
   "language": "it",
   "title": "Sei mesi con MCADD",
   "url": "https://agents.willem.com/it/posts/2019-06-24_sei-mesi-con-mcadd/",
   "source_url": "https://willem.com/it/2019-06-24_sei-mesi-con-mcadd/"
  },
  {
   "language": "pt",
   "title": "Seis meses com MCADD",
   "url": "https://agents.willem.com/pt/posts/2019-06-24_seis-meses-com-mcadd/",
   "source_url": "https://willem.com/pt/2019-06-24_seis-meses-com-mcadd/"
  },
  {
   "language": "fy",
   "title": "Seis moanne mei MCADD",
   "url": "https://agents.willem.com/fy/posts/2019-06-24_seis-moanne-mei-mcadd/",
   "source_url": "https://willem.com/fy/2019-06-24_seis-moanne-mei-mcadd/"
  }
 ],
 "image": "https://willem.com/global/images/fdffeeecc806.webp",
 "image_width": 2560,
 "images": [
  {
   "url": "https://willem.com/global/images/86709ad4cb5f.webp",
   "description": "Lucha kontra kolika ku Infacol i reflux ku Nutriton ",
   "manager_file": "148-bf2d6faf6057f115dc72e82d984e71359f16b48d8c42b4b41c2ee918cf46b556_ContentAsPost_37004_images-1.jpg"
  },
  {
   "url": "https://willem.com/global/images/16d9ef0fb567.webp",
   "description": "Boink boink, hola papa! Wega rònt!",
   "manager_file": "148-bf2d6faf6057f115dc72e82d984e71359f16b48d8c42b4b41c2ee918cf46b556_ContentAsPost_37004_images-2.jpg"
  },
  {
   "url": "https://willem.com/global/images/5295f3b91622.webp",
   "description": "Bebida kayente pa tata i yu ora nos ta na kaminda",
   "manager_file": "148-bf2d6faf6057f115dc72e82d984e71359f16b48d8c42b4b41c2ee918cf46b556_ContentAsPost_37004_images-3.jpg"
  },
  {
   "url": "https://willem.com/global/images/15b2737b36aa.webp",
   "description": "Trata ku MCADD, e medisina L-Carnitine i e polvo di energia Fantomalt (foto di Ellen Middelkoop)",
   "manager_file": "148-bf2d6faf6057f115dc72e82d984e71359f16b48d8c42b4b41c2ee918cf46b556_ContentAsPost_37004_images-4.jpg"
  },
  {
   "url": "https://willem.com/global/images/b4cf502a81a8.webp",
   "description": "Duna kuminda anochi (foto di Ellen Middelkoop)",
   "manager_file": "148-bf2d6faf6057f115dc72e82d984e71359f16b48d8c42b4b41c2ee918cf46b556_ContentAsPost_37004_images-5.jpg"
  },
  {
   "url": "https://willem.com/global/images/d3934cf2ec82.webp",
   "description": "Dato di sonjo durante e promé seis luna",
   "manager_file": "148-bf2d6faf6057f115dc72e82d984e71359f16b48d8c42b4b41c2ee918cf46b556_ContentAsPost_37004_images-6.png"
  },
  {
   "url": "https://willem.com/global/images/bcd0455a1bf6.webp",
   "description": "Ora pa lanta (foto di Ellen Middelkoop)",
   "manager_file": "148-bf2d6faf6057f115dc72e82d984e71359f16b48d8c42b4b41c2ee918cf46b556_ContentAsPost_37004_images-7.jpg"
  }
 ],
 "text": "Nasé ku MCADD\nSeis luna pasá nos yu hòmber a nasé ku un_malesa_metaboliko_rar_i_henétiko_yamá_\"medium_chain_acyl-CoA_dehydrogenase_deficiency\"_òf_MCADD (https://willem.com/en/2019-01-29_born-with-mcadd/). Durante e promé algun siman esaki no tabata nada ma ku un rollercoaster emoshonal. Aparte di e evento ku a kambia nos bida di bira tata i mama, nos tabatin ku siña i trata ku MCADD. Pone algun anochi sin drumi riba esei, i bo ta den pa un tèst serio di karakter.\nManera mi a nota despues di mi promé_siman_komo_papa (https://willem.com/en/2019-01-24_my-first-weeks-as-dad/), bo i bo kurpa lo adaptá lihé na e situashon nobo. Ku un tiki kreatividat i fleksibilidat, bo ta haña manera nobo (i dibertido) pa hasi kosnan. Mi ta kere ku esaki ta bèrdat pa ta tata òf mama na general, pero ora bo yu tin un kondishon médiko spesial, haña un bon rutina di bèrdat ta sinti manera un triunfo.\nRegurgitashon di lechi (reflux) i kolika di bebe\nDurante e promé dos luna nos tabatin algun problema práktiko ku regurgitashon di lechi i kolika di bebe. Esaki a hasi difísil pa nos yu drumi fásil. Esaki ta un reto, kombiná ku e horario estrikto di kuminda. Ku MCADD bo mester respetá e horario, loke ta nifiká ku bo mester lanta bo bebe. Ta fastioso pa lanta un bebe ku ta drumi perfekto, ora bo sa ku lo ta un reto pa laga e drumi atrobe.\nNos a resolvé e regurgitashon di lechi ku fasilidat pa hasi e lechi un tiki mas spesu ku Nutricia Nutriton, ku ta kontené farina di semia di karoba. Nos a alivia e kolika di bebe fastioso ku Infacol. Nos a konsultá nos dokter promé ku nos a hasi esaki.\nKome, drumi, wega, repití\nKu e problemanan práktiko bou di kontròl, nos a por establesé un bon rutina. Esaki ta un proseso natural unda bo simpel ta abraza e ritmo i ta buska loke ta traha, i loke no ta. Nos ta hasi tur sorto di kos, manera kamna, hasi kompra, nada, bai restorant, bai ku transporte públiko, bishitá famia, rit largu ku outo, etc.\nBo ta siña pa kaminda, i bo ta bira mas kapas ku kuido i duna kuminda ora bo ta na kaminda. Mi ta spera ku esaki ta hopi similar na e eksperensia di kualkier tata òf mama, pero ku un kondishon médiko spesial, haña e konfiansa aki ta masha importante di bèrdat.\nTrata ku MCADD\nTrata ku MCADD a bira parti di nos rutina, nos no ta pensa riba dje mas manera algu spesial. Grasias na nos atenshon pa su horario di kuminda, nos no a topa niun problema pa motibu di kuminda insufisiente.\nTabatin algun okashon ku nos tabata na 'alerta ekstra', spesial ora nos yu a kue su promé friu i ora e a haña bakuna. Ku MCADD, fiebre por kondusí na situashon di peligro pasobra e kurpa ta kima mas energia. Nos ta prepará pa situashon asina ku kuminda di energia haltu, medisina, informashon i prosedura di emergensia.\nDuna kuminda anochi\nDuna kuminda regular anochi ta parti di e horario di kuminda pa un bebe ku MCADD. E oranan eksakto ta kambia miéntras e yu ta bira mas grandi, pero duna kuminda anochi ta keda pa awor. Mi ta hasi kasi tur e sesionnan di kuminda anochi, loke ta pèrmití mi pa kostumbrá na esaki.\nSi bo wak e dato di sonjo di e promé seis luna, bo por wak e sesionnan di kuminda, pasobra nan ta marka òf e prinsipio, e final òf un interupshon di mi sonjo (interupshon ta lila den e gráfiko).\nBo por wak e ora di kuminda kambia for di 2.30 durante e promé luna, te na 5.00 na mei i yüni. Si bo tin wowo masha skèrpi, bo lo nota ku e interupshonnan ta bira mas kòrtiku tambe. Esaki ta pasobra e sesionnan ta bira mas efisiente i basá riba rutina.\nDespues di un tempu mi a kuminsá eksperimentá ku keda wak despues di e ultimo sesion di kuminda di anochi, usando e oranan di mainta tempran pa ta produktivo pa trabou. Bo por wak tambe ku regular mi ta bai drumi tempran òf tuma un siesta di dia pa asegurá ku mi tin sufisiente oranan di sonjo na promedio.\nKonklushon\nDespues di e promé siman intenso, e promé seis luna a bai masha bon pa nos tur. Nos a siña hopi i a eksperiensiá hopi \"normalidat\". Esaki a pèrmití nos pa desaroyá un rutina pa trata ku MCADD, sin pensa riba dje tur ora.\nTin semper e posibilidat ku nos lo topa ku problema ku MCADD mas despues, pero esaki no ta stòp nos di hasi tur e kosnan ku otro yu i tata/mama ta hasi! Esei ta e kos klave pa tene na mente for di e artíkulo aki!",
 "word_count": 786,
 "markdown_url": "https://agents.willem.com/pap/posts/2019-06-24_seis-luna-ku-mcadd/post.md"
}