| Zente Die Geschichte |
April 2020
Das Leben hat uns verlangsamt, da die Pandemie von Covid19 unsere Familie festhält. Thanks God, Wir sind alle okay. Insbesondere, Schutz unserer Zente (8,5 PA), Wir nehmen es wirklich ernst, zu Hause zu bleiben und niemanden zu treffen. Unsere Söhne lernen durch digitale Bildung, Ihre Lehrer geben ihr Bestes. Mein Mann musste das Restaurant, das er betrieben hatte, schließen…das kann finanzielle Schwierigkeiten mit sich bringen. Es ist so schwer, unsere Eltern auch nicht zu sehen. Ich bete für meinen Vater (over 65) der als Apotheker in einem Krankenhaus arbeitet, das jetzt zur Behandlung von Koronapatienten eingesetzt wird. Er kann nicht zu Hause bleiben und der einzige Apotheker dort sein. Es gibt jedoch viele Geheimnisse, die sich enthüllen lassen. Wie schmeckt ein selbstgemachtes Brot?, wie aufregend eine Radtour in unserem kleinen Garten sein kann, wie der Wald in der Nähe riecht, und wie unser älterer Sohn, Paul, hat es geschafft, Zente dazu zu bringen, sein ganzes Glas Wasser durch den Mund zu trinken - das passiert nicht jeden Tag, as Zente is 98% tube-fed. Unsere Familie ist dankbar für die Weisheit und Menschlichkeit unserer Regierung. Wir beten für das baldestmögliche Ende der Pandemie und die Sicherheit aller unserer Familien. Ágnes C., Hungary ———————————————————————————————————————– November 2019 Zente begann Schule im September und findet es angenehm, da das Lernen ist Spaß für ihn. Er bekam eine kennen Am liebsten fährt er mit dem Fahrrad am Donauufer in Leányfalu . entlang, wo wir leben – und bittet uns mehrmals die Woche, eine Radtour zu machen. Zente hat auch viel in Schwimmen entwickelt. Er kann sehr gut schwimmen jetzt mit Hilfe eines Schwimmbrett. Musik und Gesang ist immer noch sehr wichtig für ihn,. Er nennen leicht die Musikinstrumente er in einem Lied hören und kann eine Melodie auf die gleiche Weise wiederholen, wie nur einmal gespielt oder zweimal vor. In letzter Zeit, wir haben über seine erhöhten Ammoniakspiegel besorgt gewesen, dass diese Zeiten sein ruhiges Verhalten zu einer wilderen Art ändern. Er wurde mit Hyperammonämie in diesem Herbst für einen Tag im Krankenhaus. Zente ist das Glück, einen fantastischen Bruder zu haben, der sich um ihn nimmt, liebt es, mit ihm zu spielen und ihn lehren. Wir fühlen uns gesegnet, um sie zusammen zu sehen und zu wissen, wie nahe sie sind.
——————————————————————————————————————- 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. |
