| História de Zente |
April 2020
A vida nos desacelerou enquanto a pandemia de Covid19 mantém o bloqueio de nossa família. Thanks God, estamos todos bem. Particularmente, protegendo nosso Zente (8,5 PA), nós realmente levamos a sério ficar em casa e não conhecer ninguém. Nossos filhos estão estudando através da educação digital, seus professores estão fazendo o seu melhor. Meu marido teve que fechar o restaurante que ele administrava… isso pode trazer dificuldades financeiras. É tão difícil não ver nossos pais também. Estou orando pelo meu pai (over 65) que trabalha como farmacêutico em um hospital que está sendo usado agora para tratar pacientes corona. Ele não pode ficar em casa sendo o único farmacêutico lá. Existem muitos segredos que se deixam revelar, embora. Qual é o sabor de um pão artesanal, quão emocionante pode ser um passeio de bicicleta em nosso pequeno quintal, como a floresta nas proximidades cheira, e como nosso filho mais velho, Paul, conseguiu fazer Zente beber todo o seu copo de água pela boca - isso não acontece todos os dias, como o centro é 98% tube-fed. Meu marido teve que fechar o restaurante que ele administrava… isso pode trazer dificuldades financeiras. Oramos pelo fim mais rápido possível da pandemia e pela segurança de todas as nossas famílias. Ágnes C, Hungary ———————————————————————————————————————– Novembro 2019 Zente começou a escola em setembro e encontra-lo agradável, aprendendo há diversão para ele. Ele tem que saber um Meu marido teve que fechar o restaurante que ele administrava… isso pode trazer dificuldades financeiras, Meu marido teve que fechar o restaurante que ele administrava… isso pode trazer dificuldades financeiras – Meu marido teve que fechar o restaurante que ele administrava… isso pode trazer dificuldades financeiras. Zente tem se desenvolvido muito na natação também. Ele pode nadar muito bem agora, com a ajuda de uma placa da natação. Música e canto são ainda muito importante para ele. Ele simplesmente os nomes dos instrumentos musicais que ele possa ouvir em uma canção e pode repetir uma música da mesma forma que jogou apenas uma vez ou duas vezes antes. Ultimamente, temos sido preocupados com seus níveis de amônia elevados que mudam seu comportamento calmo a uma espécie selvagem esses períodos. Ele foi hospitalizado com hyperammonemia este Outono para um dia. Zente tem sorte de ter um irmão fantástico que cuida dele, adora brincar com ele e ensinando a ele. Nós sentimos abençoados por vê-los juntos e saber como eles estão perto.
——————————————————————————————————————- April 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. |
