Grant and Sebastian

五月更新 2020

COVID-19的家庭故事

对于我们大多数人来说，COVID-19首次将世界带入了我们的鞋子. 世界已经开始了解对于患有丙酸血症的孩子的家庭来说，感冒和流感季节是什么样的. 我们不是唯一一次对孩子生病并不得不住院感到“偏执”的人.

在某些方面，这令人感到安慰, 但在其他情况下，这完全使我屈膝. 我们很快不仅对孩子的医疗健康负责, 还因为他们的社交情感和学术福祉. 虽然我们大多数人都必须向孩子们提供支持，以确保他们的进步, 我认为我们很少有人需要担任老师的角色, 治疗师, 妈妈, 每天也要全职工作.

按职业我是老师, 但我不是特殊教育老师或物理治疗师, 职业治疗师和演讲老师. 即使我们每天为孩子而战, 我认为这是一段艰难的旅程. 这不仅为我们树立了新常态, 但对于整个世界. 它给我们的生活带来了新的恐惧, 有很多未知数. 现在，即使是典型的住院时间也变得一团糟, 每天都有新协议, 有时每小时. 我们如何将其全部融入 24 hours? 对于我们许多人来说，我们建立的扩展支持系统已被削减, 我们的家庭保健护士, 治疗师, 老师等. 已被删除, 除了缩放, 而我们在开玩笑的人与在家里帮助我们的人不同, 在这里或那里给我们一个小时的成人互动时间.

Yes, 这些日子很艰难, 但我知道未来会更美好, 或至少温暖的. 带来了全新的变化. 在夏天，公园和游泳池是我们去找男孩娱乐的地方. 这些选择在今年夏天都消失了. 我们接下来干吗? 我们已经进行了长时间的夏季常规活动. 我们如何使这些孩子保持冷静并为另一个人娱乐 3 months? 对于我们的家人，答案是重做, 我们幸运的是小, 后院成为男孩们的娱乐场所. 他们可以去外面的地方, 但不必暴露于细菌. 后院已经被覆盖, 炸毁的岛屿已经膨胀，树荫已被带入.

虽然有些病毒对它很熟悉，因为我们处理PA, 其中大部分带来了新的问题和可能的问题. 那可能很可怕, 我们很幸运有PA社区能够与. 保持联系, 分享快乐, 挫败感, 恐惧, 和我们. 在需要时寻求帮助，最重要的是一次知道, 我们不是唯一一个生活在未知世界中的人. 我们荣辱与共. 我们的家人希望您今年夏天有一段奇妙的冒险经历.

琥珀和约翰,

Grant and Sebastian, Age 7

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2016

Our story with PA started out the same as many of yours. Our sons were born looking perfectly healthy, besides being born six weeks early and being twins. Everyone that saw them thought they looked wonderful and would go home from the NICU rather quickly. 但, that all changed on the sixth day of their life. I got a call from the doctor in the NICU that Grant was struggling and had to be put on a ventilator, but they thought it was just a virus of some sort. By the time I got to the hospital he was completely comatose and there were swarms of people around him. They were trying to explain exactly what they thought had happened, but all I could understand at the time was that he was very sick and they didn’t know what to do. They were running a lot of labs on him and his twin brother Sebastian to try and see if both boys had a metabolic issue of some sort. We were quickly transferred to another hospital that had dealt with these types of conditions before. While I can remember the whole day perfectly now, in the moment everything was a blur and I seemed to be just a spectator as they hooked both boys up to an abundant amount of machines that seemed so humongous in comparison to their little 4lb bodies. They were too small for traditional dialysis, so they attempted to come up with a plan. Fortunately there was actually a visiting geneticist who was interviewing for a position at the hospital that day, who mentioned he had heard of combining ECMO and dialysis to help patients who were very small. This is what was decided as the best course of treatment for our sons. I will never forget standing over my son as they hooked up IV’s and poked and prodded him, all without him making a single, solitary sound. The ECMO and dialysis combination worked, even better than the doctors had anticipated and it seemed that both boys were on their way from catabolic to anabolic. Over the course of the next few weeks, we learned all about PA and the life that would now be our new normal. It was quite the operation at our house to get them fed around the clock, once they came home, thankfully we had and continue to have amazing support from family. The boys have had many hospitalizations since they have come home and have definitely given me lots of new gray hairs, but they have come so far. While our normal is being hospitalized with one or both of them at least once a month, they continue to grow and show us just how determined they are. They both started preschool this year and are riding the bus everyday to school. Anyone they come into contact with quickly becomes a new friend. It is so amazing to see how positively they affect the people that they come into contact with. It’s as if their personalities and happiness are contagious.

Mom of Grant & 塞巴斯蒂安

3 year old PA Superheroes

塞巴斯蒂安