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您的每周唐氏综合症意识月刊

I'm having some trouble posting to so many places, so here is a 概要 of Days 7-14! Thanks for all of your encouraging comments on this month of DS facts! It makes it worth the effort! 💙💛

Day 7 DS Awareness: Embarking on the DS journey can be a roller coaster. It is our“framily”who keep us going when life throws some unexpected side trips, and who cheer with us during the many small victories. Thank you to everyone who has 支持ed 埃维 for the Buddy Walk this year! We 爱 you and 应用程式reciate you! 


开始伙伴步行! 埃维被起跑线的欢呼声淹没了。 


第8天:估计有90%的产前DS诊断母亲会选择终止妊娠。当我第一次发现我们的诊断时,我不得不在一般文献中进行艰苦的搜索,以找到有关生下唐氏综合症孩子的任何积极信息。能够识别染色体缺陷的非侵入性血液检查的可用性增加,可能会在某些国家消除患有DS的人。对于我和Evie来说,我们的目标是提高认识并以成为一名额外的小红人的同伴为荣! 





 Day 9 DS Awareness: Since the 1970’s, public 学校s have had to by law provide a free and 应用程式ropriate education to individuals with 唐氏综合症. We already see the benefits of this, and evie is only in 学前班! And 应用程式arently she likes 棋! Thanks for 支持ing public 学校 education. They are pivotal for our children and our 未来,no matter who they are or where they are.




DS Awareness Day 10: Being included is priceless. 埃维 is fully included in her 学前班 class with 应用程式ropriate assistance so that she can participate. These include an aide for safety, a special chair for 支持, and an electronic 通讯 device (NOVA Chat). 埃维 爱s being included, and just blossoms when she goes to 学校! Scroll for your daily evie pic!





DS宣传日11:DS的婴儿出于各种原因经常会在NICU中花费一些时间。 埃维因心脏缺陷,肺动脉高压和体重增加而入院。我们的重症监护病房护士在许多方面挽救了生命。马萨诸塞州目前正在投票以限制护士与患者的比例。虽然我坚决支持拥有优质的护理和安全的界限(Evie’NICU的护士每个都有两名患者),编写#1的方式可能会花费更多,并且会对医疗服务的获取产生负面影响。想象一下去急诊室并被告知要等待或去另一家医院,因为他们已经达到极限。我不’我不认识你,但是当我去急诊室寻求帮助时,我喜欢被人看到!安全限制很重要,但是由于变化如此之大,只能实施37天,因此他们需要更加谨慎地制定法规。 埃维(Evie)说:对#1不投​​反对票!



埃维's first bath

DS Awareness Day 12: People with 唐氏综合症 are not always happy, contrary to popular belief. They have the same emotions as everyone else. And sometimes they are sad that Mommy is testing out Halloween outfits and the skirt is so poufy that it’s 瘢痕y.



DS宣传日13:有些患有DS的孩子需要更长的口头发言时间。正确移动舌头和口腔肌肉需要大量协调,而舌头因面部结构较小而倾向于较大。 埃维可以说几句话,但是当我们不这样做时,会感到沮丧’无法理解她的话语或迹象。她本周开始了一种名为NOVA chat的增强型通讯设备。到目前为止,她对此感到非常满意。我们已经习惯于随处携带它,但是到目前为止还不错。




DS宣传日14:唐氏综合症患者上学,工作,参与影响他们的决策,建立有意义的关系,投票并以许多出色的方式为社会做出贡献。 埃维在照片中读的书叫做“I Love You for You.”它教导各种动物,它们都有各自独特的特征,每一种都是特殊的。此信息对Evie尤为重要,但我相信所有儿童(和成人)都需要知道每个人对世界都有自己独特的能力和贡献。当我们因为别人不同而分开别人时,我们都会输掉。 


DS宣传日3:为什么走路这么难

DS Awareness #3: 埃维’s getting so good in her 沃克, that she surprised everyone in gym class by taking off to go tag her classmate during a game! Here’s a #国债 to the spring when Ms. Sassy Pants took off when I told her it was time to go home. She’s overcoming her 低渗 (low 肌肉张力) every day! With low 肌肉张力, 步行 or 常设 for long periods of time is hard 工作! #非凡



给我女儿上课的信

Something I never thought I'd have to do when I first got pregnant was that I'd need to explain to the other 孩子们 in my daughter's class what's different about her. And honestly, after spending a month in 学前班, I don't think the other 孩子们 see too many of the differences. The 信件 is more for the 父母, so they won't be caught off guard if a child goes home 说 about a "plastic tube that goes into 埃维's stomach," or asking why 埃维 has a 轮椅 and a 沃克.


埃维为她的粉红色轮椅造型! 保险不会涵盖我选择的发光轮(出于某种原因...)
我们的学前班团队非常了不起,他们对过渡的建议之一是给学前班的其他家庭写一封信,以防万一孩子问到了g型管。 他们让我与另一个妈妈接触,他的大号现在已经三年级了,并且正在蓬勃发展。因此,对这位母亲非常感激,这位母亲允许他们向我发送她的原始信件的副本,这样我就不必从头开始。 她为我提供了解释g型管和唐氏综合症以及肌张力低下的框架。 我们的信如下-我希望这能帮助另一位DS妈妈带着G型管进入学前班!



X女士学前班的亲爱的家人:(为保密起见,删除了姓名)


我们首先要感谢您的优秀孩子,他们张开双臂欢迎我们的女儿埃维。 我们听说她的同学正在独立地与她一起玩耍,拍打她的膝盖并告诉她不要害怕,或者宣布“Evie is beautiful.”  这对我们来说意味着世界,因为为残疾儿童开学前教育可能令人生畏。 这封信是为了帮助您了解一点Evie’的特殊需求以及您的孩子在教室里看到的东西,以便您可以帮助孩子了解他们是否有疑问。 我们非常开放,很高兴回答您可能遇到的任何问题。


埃维 has 唐氏综合症 (DS), which simply means that she has an extra copy of her 21st chromosome.  We call her 埃维 the Extraordinary, because she has overcome so much in her 3 years: 5 weeks in the 重症监护病房, open 心 手术 for holes in her 心, eye muscle 手术, so many doctors’appointments, and a 进料管. 


埃维在5周大时接受了喂食管,因为她没有吃力。您的孩子可能会见护士或Evie’助手将塑料管和注射器连接到Evie中的一个小端口’s stomach to “drop in” some formula.  我们通常会告诉好奇的孩子Evie不会’还不知道怎么用她的嘴吃东西,所以我们必须给她“milk”通过她的肚子。埃维(Evie)可以吃蔬菜泥(例如苹果酱,布丁等),但其他质地(例如饼干)则有窒息的危险,因为她不知道如何安全地咀嚼或吞咽较稠的食物。 她正在学习养活自己,我们希望她的同学会激励她尝试更多! 


You may notice 埃维’s purple 沃克 or her pink 轮椅 in the hallway, or her ankle braces for extra 支持. Walking is something that 埃维 is 工作ing on, because her muscles are weaker. She has a special chair in the classroom for more 支持 while she sits. She is learning to use all of these tools to be able to get around like her 同行. When she is tired, she will still crawl to get around.


While 埃维 does not know how to speak much with her mouth, she knows more than 100 signs in 标志语言. She also uses a book of pictures that are specially made for her to be able to point to what she wants to say. Evie understands a lot more than she can express. She knows colors, 信件s, and is learning numbers. She 爱s 图书 and 唱歌, and definitely enjoys circle time. 


所有这些,Evie就是Evie! She is not defined by her 唐氏综合症. She is a feisty, affectionate, curious 3 year old girl who 爱s the Itsy Bitsy Spider, playing with blocks, and playing with playdough. We are immensely grateful to Ms. X, the teaching assistants, and 埃维's aide as well as her classmates who are helping to teach 埃维 new things. If you have any questions, please feel free to ask us. We are looking forward to getting to know all of you more!



祝一切顺利,


艾米和埃里克



In case you wondering, after the 信件 was given to all the families, everyone made an effort to say hi to us, and acknowledge 埃维 when she arrived 在 学校. It's a relief not to have to explain things over and over again, or receive questioning looks and wonder what people are thinking. We are grateful for a proactive 学前班 team! 

埃维's Favorite Masks

 Hi all!  这是埃维(Evie),我想与您分享我最喜欢的口罩。妈妈尝试了几种不同的类型,这是我...