| La storia di Zente |
aprile 2020
La vita ci ha rallentato mentre la pandemia di Covid19 mantiene il blocco della nostra famiglia. Thanks God, stiamo tutti bene. In particolar modo, proteggere il nostro Zente (8,5 PA), prendiamo davvero sul serio il fatto di restare a casa e di non incontrare nessuno. I nostri figli stanno studiando attraverso l'educazione digitale, i loro insegnanti stanno facendo del loro meglio. Mio marito ha dovuto chiudere il ristorante che aveva gestito ... questo potrebbe portare difficoltà finanziarie. È così difficile non vedere neanche i nostri genitori. Sto pregando per mio padre (over 65) che lavora come farmacista in un ospedale che viene attualmente utilizzato per curare i pazienti con corona. Non può rimanere a casa essendo l'unico farmacista lì. Ci sono molti segreti che si lasciano svelare però. Che sapore ha un pane fatto in casa, quanto può essere eccitante un tour in bici nel nostro piccolo cortile, come puzza la foresta vicina, e come nostro figlio maggiore, Paul, è riuscito a far bere a Zente l'intero bicchiere d'acqua per bocca - non succede tutti i giorni, come è il centro 98% tube-fed. La nostra famiglia è grata per la saggezza e l'umanità del nostro governo. Stiamo pregando per la più presto possibile fine della pandemia e per la sicurezza di tutte le nostre famiglie. Ágnes C, Hungary ———————————————————————————————————————– Novembre 2019 Zente iniziato la scuola a settembre e lo trova divertente, l'apprendimento è divertente per lui. Ha avuto modo di conoscere un Ama andare in bicicletta lungo la riva del Danubio a Leányfalu, dove viviamo – e continua a chiederci di andare a fare un giro in bicicletta più volte alla settimana. Zente ha sviluppato molto in piscina troppo. Si può nuotare molto bene ora con l'aiuto di un bordo piscina. La musica e il canto sono ancora molto importante per lui. Egli facilmente i nomi dei strumenti musicali può sentire in una canzone e può ripetere un brano stesso modo in cui ha giocato solo una volta o due volte prima. Ultimamente, siamo stati preoccupati per i suoi livelli di ammoniaca elevati che modificano il suo comportamento calmo a una specie selvaggia quei periodi. E 'stato ricoverato in ospedale con iperammoniemia questo autunno per un giorno. Zente è fortunato ad avere un fratello fantastico che si prende cura di lui, ama giocare con lui e insegnandogli. Ci sentiamo benedetti per vederli insieme e per sapere quanto sono vicini.
——————————————————————————————————————- aprile 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. |
