| Povestea lui Zente |
Aprilie 2020
Viața ne-a încetinit pe măsură ce pandemia de Covid19 menține blocajul familiei noastre. Thanks God, cu toții suntem bine. În special, protejarea Zentei noastre (8,5 PA), chiar ne luăm în serios să rămânem acasă și să nu întâlnim pe nimeni. Fiii noștri studiază prin educație digitală, profesorii lor fac tot posibilul. Soțul meu a trebuit să închidă restaurantul pe care îl conducea ... acest lucru poate aduce dificultăți financiare. Este atât de greu să nu ne vedem nici părinții. Mă rog pentru tatăl meu (over 65) care lucrează ca farmacist la un spital care este folosit acum pentru a trata pacienții cu corona. Nu poate rămâne acasă fiind singurul farmacist acolo. Cu toate acestea, există o mulțime de secrete care se lasă dezvăluite. Ce gust are o pâine preparată de sine, cât de interesant poate fi un tur cu bicicleta în curtea noastră mică, cum miroase pădurea din apropiere, și cum este fiul nostru mai mare, Paul, a reușit să-l facă pe Zente să-și bea întregul pahar cu apă pe gură - nu se întâmplă zilnic, cum este centrul 98% tube-fed. Familia noastră este recunoscătoare pentru înțelepciunea și umanitatea guvernului nostru. Ne rugăm pentru sfârșitul cât mai curând posibil al pandemiei și siguranței tuturor familiilor noastre. Ágnes C, Hungary ———————————————————————————————————————– Noiembrie 2019 Zente a început școala în septembrie și consideră că este plăcut, învățare este distractiv pentru el. El a ajuns să cunoască o Îi place de echitatie bicicleta de-a lungul malului Dunării, în Leányfalu, unde traim – și păstrează-ne cere pentru a merge pentru o plimbare cu bicicleta de mai multe ori pe săptămână. Zente a dezvoltat foarte mult în înot prea. El poate înota destul de bine acum, cu ajutorul unui consiliu de înot. Muzică și cântând sunt încă foarte importante pentru el. El cu ușurință numele de instrumente muzicale el poate auzi într-un cântec și se poate repeta o melodie în același mod ca și a jucat doar o dată sau de două ori înainte de. în ultimul timp, am fost îngrijorat cu privire la nivelurile de amoniac ridicate care schimba comportamentul său calm la un fel aceste perioade Wilder. El a fost internat in spital cu hiperaminiemiei această toamnă pentru o zi. Zente este norocos să aibă un frate fantastic, care are grijă de el, îi place să joace cu el și să-l predau. Ne simțim binecuvântați să le vadă împreună și să știe cât de aproape sunt.
——————————————————————————————————————- Aprilie 2016 Zente is turning five in June and we give thanks to God that he lives a really happy life these days. He has been fine for a long time now! He goes to kindergarten where we live in Leányfalu, Hungary, and spends there two hours a day. Being a kind, open child, he really enjoys it! He loves people and seems to us that everyone likes him in kindergarten too. Zente loves music, can sing nicely, following the rhythm and tune very well. Playing ball is his favourite. Since a recent dietary change with more natural protein intake and some changes in ratio, he has not been on monthly IVIG – hopefully – any more. His speech has been developing rapidly for the past few months too. He is much stronger as well and can run as fast that we sometimes have to chase him and can hardly catch him! He goes to speech therapy, physical and occupational therapy in kindergarten. We take him to horse-riding and swimming lessons that make him smile all along. Zente was last hospitalized for three days last October and for a two-week-long feeding therapy last December. His friendly, happy attitude to life means a lot for our whole family.
Zente 2013 Our younger son, Zente was born on 30 June 2011. He didn’t show anything strange on his first days of life. He was a beautiful baby, nursing well, so we were let home from hospital with a slight jaundice. His cry was unusual for us though: like the sound that a hawk gives. At home Zente slept more each day and fell asleep after a few minutes’ nursing. When he was six days old we were sent back to hospital with jaundice. One day later we got a call that Zente’s newborn screening showed something wrong and that the test should be repeated. He was diagnosed with PA. His ammonia level was elevated, his blood-sugar level too, so we ended up on the intensive care. He was in acidosis that time. He was on constant feeding tube, infusion. There were days he didn’t even open his eyes. We spent two more weeks in hospital during which Zente gradually started to nurse again, and we were let home in fine condition, with Zente eating by mouth 100% and tolerating mother’s milk so well that he didn’t need any formula at all. This big change was God’s miracle for us as an answer to our and our friends’ prayers. We had three wonderful months back home in great health condition. When Zente was four months old, his ammonia level raised again, so we needed to reduce the mother’s milk amount and started to give formula too. At first, he was willing to drink it from a bottle, but his appetite for the formula gradually disappeared and we needed to start using ng-tube. Due to his high ammonia level we had to go back to hospital, where he started throwing up too and his appetite for mother’s milk started fading. We spent four critical months in hospital. It was difficult to find a proper vein, then getting several central veins some of which turned out not to work. At 5 months of age Zente got a g-tube. He had painful dermatitis due to low total protein value, vomiting constantly, got a serious infection of staphylococcus aureus. He could only be fed through intestinal tube for two months. Thanks God, he survived and his MRI showed no problem in the brain and his heart remained healthy too. Altogether we spent seven months in hospital, needing IV at times when Zente throws up a lot. We are grateful to our doctor, the dietitians and nurses who take great care of Zente. Their work and love for Zente is God’s miracle for us. Zente is an open child, very friendly with people, and who loves his brother. We are lucky to have him in our family. He is a real gift. |
