| Gwen M. – 十月更新 2019
格温转身 13 二月 2019 & 刚开始她 7日 小学学年. 在她早年我们从来没有想到她会庆祝这个生日, 也没有我们有任何想法全 & 传奇的一生，她将生活. 她是一缕阳光每一天. 格温似乎并不觉得愤怒或仇恨, 这让她的生活了不起. 给她, 大家好 & 一切都是晴天 (除了抽血 & 蜘蛛。) 格温成了病得很重 2 days old & 考入全国儿童医院新生儿重症监护病房. 她被放在了呼吸机，收到腹膜透析几天，直到她来到了她昏迷了 & 呼吸都在她自己. 在她的 3RD 她被诊断出患有PA的那一天. At age 1 she stopped eating by mouth & 从那时起，她一直 100% 通过喂食管，因为她拒绝吃. 尽管挫折, 她继续增长 & 兴旺. Last year, NIH的访问期间, 她被正式诊断为自闭症的一个温和的形式. 格温是一个巨大的风扇或说话, 唱歌, dancing, & 与她的娃娃玩. 她喜欢海滩度假 & 前往迪斯尼世界; 她最喜欢坐的是恐怖的好莱坞塔. 在 2015 她加入了当地的特奥游泳队 & 现在他们的体操队，以及. 直到今年8月, 格温曾护理周一至周五. 这学年我们做了艰难的决定，以消除她的在校护理. 这是一个很大的转变，但到目前为止，她处理得非常好. 她乘坐校车，她自己, 转让教室, 进入到护士办公室吃午饭 (喂食管), & 乘坐公共汽车回家，她的弟弟罗比 (16) 迎接她的. 直到我下班回家, 她做功课 & 读. 现在她真的冰冻章书. 冷冻说起, 今年春天, 格温恳求试镜冷冻小，为孩子们的音乐 13 & 下. 她走进她自己的试听室 (装扮成安娜), 唱“你想堆雪人”, 阅读与铸造团队线路, & 落地一小部分作为中东艾尔莎! 那是一个梦，她成真. After 3 做法月, 她在6月份她的舞台处女作. 她 7 服装变化, 3 舞曲, 几行, & 哪怕是一点点的独奏. It was truly amazing. 格温的斗争，以交朋友她的年龄, 这是很难与她在中学是, 但它似乎没有打扰她. 她主要是吸引到爆棚青春期前的女孩 & 避免谈论男孩. 虽然她错过了很多的社会的事情，典型中学的孩子做, 她不断地寻找新的方法来填补这些空白. 她的旅程，至今一直是独一无二的 & 满满的欢乐. 还有什么比这更好的? 欲了解更多关于Gwen的故事, visit GwenForACure.com updated May 2015 |
My beautiful girl just turned 9 years old this year and it seems nothing short of a miracle. At 2 days of age, Gwen became catastrophically ill, her body temperature dropped below 90 度, ammonia level exceeded 1,500 umol/L and she stopped breathing. She was placed on a ventilator and received peritoneal dialysis for a couple of days until she came out of her coma and was breathing on her own. On her 3rd day she was diagnosed Propionic Acidemia and her future was very uncertain. During Gwen’s first 3 years of life she spent as much time in the hospital as she did at home. Although she’s been admitted more than 50 times, she’s undoubtedly one of the happiest people on Earth. At age 1 she stopped eating by mouth, and since then she’s been fed 100% by a feeding tube because she refuses to eat anything. For many years she wore a backpack to carry her feeding pump, but she is now able to tolerate her formula through small bolus feedings and has a nurse who cares for her during the day.Gwen knows she’s very cute and she plays that to her advantage. What she does not yet know is that she’s very brave, has an endless capacity to forgive, an amazing will to live, and a beautiful spirit from God that has touched the lives of hundreds. She talks non-stop, sings the entire time we’re in the car, jumps off of anything she can climb on, loves to dance, play with her American Girl dolls and spend time with her brother and friends. She’s in second grade and receives special education services for PT, OT, math and reading. She’s also in Brownies and on the Special Olympics swim team! She is a miracle, a daily blessing, and a ray of sunshine in any room. I am grateful for every day I have with her and so proud to be her mom.
—————————————————————————- Gwendolyn Grace M. was born at 3:33 p.m. on February 3, 2006. She will soon be only 5 months old, but has already brought a lot of drama to our lives! She was diagnosed at 3 days of age with Propionic Acidemia. At 2 days of life we found ourselves at Columbus Children’s Hospital emergency room only hours after being discharged from the hospital of her birth. We were quickly transferred to the NICU, where we spent the next 2 weeks. That first night at Children’s, her ammonia level reached over 1,500 & she had stopped breathing. The fantastic medical staff acted very quickly. Gwen was intubated & put on dialysis. We nearly lost her a couple of times during that stay, but she pulled through. She ended up having another episode less than 2 weeks after being discharged. Once again, she pulled through magnificently. We have quickly learned the fragile nature of good health, the strength of a family, along with the amazing power of prayer. My baby girl is nearly 4 months old & seems to be beating all the odds. Despite her rough beginning, she is meeting all her early milestones. Gwen has an awesome fun club, including her brother, parents, grandparents, aunts, uncles, cousins, doctors, nurses, teachers, & 朋友. We are so grateful for their love & support. Check out our new web-site with even more pictures – Click Here.
Gwen’s 1st B-day!!!! |
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