| Zente的故事 |
April 2020
由于Covid19的大流行使我们的家庭陷入困境，生活使我们放慢了脚步. Thanks God, 我们都很好. 尤其, 保护我们的Zente (8,5 PA), 我们真的很认真地留在家里而不要见任何人. 我们的儿子正在通过数字教育学习, 他们的老师正在尽力而为. 我丈夫不得不关闭他经营的餐馆……这可能带来财务困难. 也很难不见我们的父母. 我为父亲祈祷 (over 65) 他在一家医院担任药剂师，该医院现在正用于治疗电晕患者. 他不能呆在那里成为唯一的药剂师. 虽然有很多秘密可以让自己暴露出来. 自制面包的味道如何, 在我们的小后院骑自行车旅行会多么令人兴奋, 附近森林的气味, 以及我们的大儿子, 保罗, 设法让Zente用口喝掉整杯水–每天都不会发生, 以中心为中心 98% tube-fed. 我们的家人感谢我们政府的智慧和人性. 我们为大流行的尽早结束和所有家庭的安全祈祷. ÁgnesC, 匈牙利 ———————————————————————————————————————– 十一月 2019 Zente 9月开始上学，发现它令人愉快, 学习没有乐趣，他. 他结识了 他喜欢在利尼法卢的多瑙河河岸骑自行车, 我们住的地方 – 并不断要求我们一周骑几次自行车. Zente已经开发出了很多游泳太. 他可以用游泳板的帮助下，现在游得不错. 音乐和唱歌仍是他非常重要. 他的名字很容易，他可以在一首歌听，可以重复曲子只打了一次或两次，然后用同样的方法乐器. 最近, 我们一直担心的是改变他的冷静行为的一种狂野这些时期他高的氨含量. 他与高血氨症住院今年秋天一天. Zente很幸运地拥有一个梦幻般的兄弟谁照顾他, 喜欢和他玩，教他. 我们感到幸运，看到他们在一起，知道他们是如何接近.
——————————————————————————————————————- April 2016 Zente是在六月开启五我们感谢上帝，他住一个真正幸福的生活，这些天. 他已经细很长一段时间，现在! 他去幼儿园，我们住在Leányfalu, 匈牙利, 并且花费那里每天做两小时. 作为一种, 打开的子, 他很喜欢它! 他爱的人，似乎我们每个人都喜欢他在幼儿园过. Zente酷爱音乐, 可以很好地唱歌, 下面的节奏和曲调非常好. 玩球是他的最爱. 由于具有更自然的蛋白质摄入量最近的饮食变化和比有些变化, 他一直没有每月IVIG – 希望 – 再. 他的讲话已经为过去几个月发展迅速过. 他是更强的好，可以以最快的速度，我们有时不得不追他，也很难追上他跑! 他去言语治疗, 在幼儿园的物理治疗和职业治疗. 我们带他去骑马和游泳课，让他一起微笑所有. Zente上次住院三天去年十月一两个星期之久的喂养疗法去年十二月. 他友好的, 快乐的生活态度意味着很多对我们全家.
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. |
