Chase W. age 22 – updated 4/2020
大家好,
自从我写了有关Chase的更新以来已经四年了. He is 22 我已经快岁了，我很高兴地向大家报告，在这个非常困难的大流行时期，他表现出色并且保持健康.
在过去的四年中，Chase要求两次住院. 在4月 2017, 蔡斯患了肺炎. 他在呼吸机上待了三个星期. 我们不确定他是否会做到, 但蔡斯是一个战士，我们有很多人为他祈祷. 你们中的许多人都是那些祈祷的一部分, 我也感激不尽. 除了大部分时间，他的新陈代谢稳定, of course, 他生病时. 除了遗传学医生和神经科医生, 我们正在找一位长Qt综合征的心脏病专家. 我们还看到了一位肾脏科医生，最近才知道他的肾脏仅在百分之五十的范围内起作用。. 尽管有这些挑战, 大通保持相对健康.
蔡斯去年春天高中毕业. 对他来说真是太令人兴奋了. 我非常爱他的学校, 但是现在是他继续前进的时候了. 最大的挑战是为他的毕业后找到合适的课程. 我找到了一个可以满足他所有需求的程序，并且能够获得该程序的资金. 那真是太好了!
蔡斯是一个很快乐的人，给遇到的每个人带来微笑. 他喜欢从战士生日俱乐部获得生日贺卡. 他喜欢和家人在一起, 特别, 他的哥哥凯尔. 他喜欢看电视上的体育节目，非常喜欢坐在轮椅上散步. 他能自己走路，但他很累.
我希望在这个非常困难的时期，我们所有的家人都能保持健康. 这真是一个令人恐惧的时刻，但是拥有这样的组织非常有帮助. 我对PA基金会和OAA所做的一切都感激不尽.
Amy
妈妈追 22 PA
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更新大通W., age 18
大家好, 我们已经推出了一个更新大通最后一次, 他十岁. 他将目光转向 18 下个月! 我怎么也不敢相信的时候已经通过飞行.
大通已长成一个英俊的年轻人. 他真的失去了很多的婴儿肥，并已经得到了精简和高. 我们不得不做出调整，他一路上公式, 但, 总体, 大通已经做得非常好. 他还没有吃口服任何东西，除了水饮料.
目前，他是在一个特殊的教育学校初中. 他开始这所学校作为二年级学生. 这是这样一个伟大的变革为他. 我们试图程序在我们当地的高中, 但, 它只是无法满足所有大通的需求. 也, 它有过 2,000 students, 而大通目前学校有 200 students. 该计划他是在是美好的. 他们实际上是在教他生活技能, 他们有视线庇护工场. 大通有一定的工作，他必须每天都做. 学生们, 与工作人员一起就往社区每周一次. 他, 也, 接收语音/语言治疗, occupational therapy, 和ABA治疗.
大通一直没有住院至少五年. 任何疾病，他已经得到了, 我们已经能够在家控制, 包括胃病. 我们有, 也, 终于有癫痫发作大通免费 6 months. 他是三个药物治疗癫痫他, 他们确实控制得很好.
大通的体力肯定已经下降，多年来. 医生要排除一切, 所以MRI很快计划为他. 他已安装了矫形器，这已帮助很大，他走路. 他得到疲劳很容易, 有时需要一个轮椅. 这是男孩，当他年轻的时候太奇怪了, 你从字面上不得不“追”他无处不在.
总体, 大通很高兴. 他很喜欢他的书, 他的某些音乐玩具, 和看电视上的体育. 他喜欢花时间与他的家人特别是他的大哥哥凯尔当他从大学回家. 他喜欢他的篮球和棒球的课外活动, 他可能并不总是参与, 但他很喜欢作为一个旁观者!
我觉得很幸运，大通的妈妈. 他是这样一个特殊的孩子. I am, 也, 非常感谢为PA基础, 以及, 道路.
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Chase W.
Our son Chase was born March 19, 1998. He was our second child and my husband and I were so excited because we were having another boy and Kyle, our older son, was going to be a big brother. We had no idea what was ahead of us. Chase’s story is so familiar to all PA families. By Chase’s third day of life, I knew something was not right. He would not breastfeed and his breathing was very labored. I also noticed an odd smell on him when I held him close. It was late at night and I alerted the nurse, but she just thought I was tired. I insisted that he be taken to the nursery for the doctors to check him out. I remember calling my husband telling him Chase was very sick and this was before anyone told me what was wrong. I just knew something was wrong with him. As a mom, you just know. Sure enough, the nurse came back, and told us that his temperature had dropped to 95 degrees and he was acidotic. Of course, I did not know what that meant. Fortunately, we were in a very good hospital and they immediately started giving Chase medicine that would help him, especially with his ammonia. They did have to transfer him to St. Louis Children’s Hospital, but by Chase’s fifth day of life, the doctors at Children’s hospital were very sure he had Propionic Acidemia. My husband and I, of course, had never heard of it. I just remember asking God to please spare our son so my son Kyle could have a little brother.
Now Chase is 10 years old. We can’t believe it sometimes. In the beginning, the doctors were very guarded on Chase’s prognosis because he had an early onset case of PA and not a lot was known. He has been hospitalized so many times we have lost count, but as he has gotten older, those hospital admissions have decreased. He has just recently started having seizures again, but besides that his PA is very much in control.
Chase is such a sweet boy, he brings so much joy to our lives. He is developmentally delayed, but he is making strides every day. He really lives up to his name, by the time he was walking at 18 months, we were definitely “chasing “him around and have been ever since. We are so thankful to all the OAA families and the PA families for all the support and advice. With this disease, you can really start to feel alone, but it is such a blessing to be able to connect with other families. This past year, we went to our first PA family day, and we had such a good time. It was so nice to be able to talk to other families about g-tubes and other stuff and know that other people totally know where you are coming from.
We would love to talk to other families.
God bless you,
Amy, Jackson, Chase 10 PA, and Kyle 14