| Zente’s Story |
April 2020
Life has slowed us down as the pandemic of Covid19 keeps our family lockdown. Thanks God, we are all fine. Particularly, protecting our Zente (8,5 PA), we really take it seriously to stay home and not to meet anyone. Our sons are studying through digital education, their teachers are doing their best. My husband had to close the restaurant he had been running…this may bring financial difficulties. It is so hard not seeing our parents either. I’m praying for my father (over 65) who is working as a pharmacist at a hospital that is being used now to treat corona patients. He cannot stay home being the only pharmacist there. There are a lot of secrets that let themselves be revealed though. What a self-made bread tastes like, how exciting a bike tour in our small backyard can be, how the forest nearby smells, and how our older son, Pál, managed to make Zente drink his whole glass of water by mouth – it does not happen everyday, as Zente is 98% tube-fed. Our family is grateful for our government’s wisdom and humanity. We are praying for the soonest possible end of the pandemic and the safety of all our families. Ágnes C, Hungary ———————————————————————————————————————– November 2019 Zente started school in September and finds it enjoyable, learning there is fun for him. He got to know a He loves riding his bike along the river bank of the Danube in Leányfalu, where we live – and keeps asking us to go for a bike ride several times a week. Zente has developed a lot in swimming too. He can swim quite well now with the help of a swimming board. Music and singing are still very important for him. He easily names the musical instruments he can hear in a song and can repeat a tune the same way as played only once or twice before. Lately, we have been worried about his elevated ammonia levels that change his calm behaviour to a wilder kind those periods. He was hospitalized with hyperammonemia this autumn for a day. Zente is lucky to have a fantastic brother who takes care of him, loves playing with him and teaching him. We feel blessed to see them together and to know how close they are.
——————————————————————————————————————- 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. |
was the toughest we have had thus far. The IEP’s were giving me panic attacks. Nalani was getting more and more withdrawn and unhappy. I had to do a lot of research and soul searching to decide what to about high school. We live in a really good school district and I am aware of the importance of inclusion but, after visiting one of the special school districts self-contained schools I decided we would give it a try. Nalani has not attended one of the special school district schools since preschool age 3-5.
thought I would write an update. She is in 8th grade and loves school. Every morning she wakes up asking if she can go to school even on the weekend. Next year for high school I am planning on sending her to a self-contained high school instead of the public high school in our district. I think this will be better for her socially and she is so tiny (4ft 9in) I am worried that the high school will swallow her up.
