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带凡尼回家

我们做不到的,一个普通的美国人做到了。。。www.bringfannihome.weebly.com 以下是我在谷歌翻译基础上的修改,希望大家支持!

带凡尼回家

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几年前,我们是深深沉陷在不孕不育的药物中,人工授精失败,破碎的精神,布兰登和我开始寻找去收养。 具体来说,我们希望找到一个患有PKU(苯丙酮尿症)且需要一个家庭的孩子。 你们中许多人都知道我有PKU(苯丙酮尿症),这是一种遗传疾病,影响身体分解蛋白质的氨基酸之一的能力。 未经治疗的PKU导致严重的智力低下,癫痫发作,和其他毁灭性的结果。

当时,我们正在探索我们的选择,我们被告知,要找到一个有PKU孤儿就像是大海捞针一样。 它不会发生,放弃吧。 这就是我们被告知的,几个月后,我让这个梦想去了。

快进到今年三月。

我是几个PKU在线社区的成员, 其中一个送出了一个患有PKU小女孩在中国寻求领养的信息。 她在4岁时被遗弃在公共交通系统上。 该机构希望能找到一个家庭与PKU的知识将她带回家,便伸手寻求社会帮助。

说实话,当我发现了关于她的,我的心漏了一拍,我立刻感觉到一点点的拉锯战。 我发邮件给该机构,发现会有很多很多困难。 我们没有计划领养了。 我们甚至好久没有想这事了! 这已不是我们的家庭计划的一部分了。 (我现在笑了,因为我敢肯定,每次我说“我们的计划”,就会引得上帝大笑至极。)

总之,我通过电子邮件发送到机构了解到了领养的家庭成本和法规,然后很实在地告诉上帝说“哈哈,你一定在逗我。” 然后就试图忽略那个纠结。

几个星期过去了,该机构给我发了照片。 这个美丽的,完美的小东西正坐在她的木板床(床垫),只是笑嘻嘻地合不拢嘴。

纠结,纠结。

因此,对话是这样的……“好吧,上帝,你得到了我的注意,我期待这次是真的,我会去问更多的信息, 还会和关于它的一些人聊天,但我不会像谈婚论嫁那样兴奋,因为我知道这是有太多太多山脉的阻挡,我们不是的,我们不是那个家庭。不过没关系,我会迁就你。”

之后几个星期的过程中,纠结变得更像是一个猛拉。 我彻夜难眠,看到她的脸。 我想象她站在火车上,哭了。 想知道她妈妈去的地方。 害怕和孤独。 我不知道,我想对她说什么。 我又想,我们的家人会如何变化。 我们现在的女儿埃默里的生活会如何改变。 我想,从中国收养是多么巨大的金融方面的负担,而且我们是如何措手不及,我们。

但大多数情况下呢?

我想,中国的系统里,孤儿14岁以后国家就不管了。 这使得这个小女孩找到一个家庭只有7年了。 仅有7年。

对话继续像这样…“”真的吗?我不知道……..它可行吗?它可能会奏效。我将无法正常工作。有没有办法或者也许这可能吗?“

我继续寻问也得到一些局外人的意见。 领养它是不是对我而言太多了? 太大了? 这是一个疯狂的想法吗? 这是上帝在对我说话吗? 或者只是我的同情的心说话吗?

在此期间,B和我讨论了许多。 他有开放的想法,但他和我一样,感觉就像是一个不可能的山要爬。 我的意思是,我们现在赚到足够支付我们的帐单,但也没有办法可以拿出30,000美元去国际收养。

我们祷告,祷告,聊及此事。 最后,我们决定,我们只是在没有看到小女孩的视频之前无法做出决定。 我们知道她患有一些智力的延误,由于她已耽误了PKU的诊断。 此外,根据她的医疗报告,她吃东西,也从未能按PKU饮食治疗。 那是不公平的,如果让我们获得她,然后却无法担当对她的长期照顾,如果她是如此的严重延误,她将无法独立生活。

于是我就向领养机构要一个凡尼的视频。

我要了一次,又一次。

几个星期过去了,然后几个月。

我一直在祈祷上帝给我发一份大且华而不实的标志。 是或否,其中一个是什么? 由于当时没有回应我所请求的视频,到了五月底我以为,这扇门关了。 作为最后的努力,我发了又一个电子邮件。

就这样,视频来了。 她是美丽的,你们知道吗。 她胆小,害羞,有些困惑,但她可以沟通。 她想讨好她的照顾者。 她希望帮助其他孩子,她明白一个简单的请求。 她不是那个我想象中木木的,反应迟钝的小女孩。 我找了一些专业人士,以及观看视频,我们都同意,她并不是灾难性的损害。 她是有希望的。

所以我们在这里。 凭信心行走。 B和我要带她回家,让她加入我们的大家庭。 我希望能帮助她得到适当的治疗,达到PKU能充分发挥的潜力。 一些损害是可逆的,但并不多。 最重要的是让她在这里。 停止目前正在发生的损害,道路上是最好的,她可以得到她。

从“是啊,没错,上帝。好一个开始。” 到现在,“好吧,我去。只要帮我拿。”

她的名字是凡尼。 请为她和我们的祈祷。 这是对我们都非常的未知领域。 我们都在争先恐后地筹钱带她回家,这是可怕的。 但就像我说的,我们走的信念。 如果它真正的用途是要发生,它的意志。 如果没有,我们可以帮助凡尼找到一个家。 我们正在建立我们的募捐活动,我们的筹款网页或直接向机构去。 它可以专门用于凡尼这样,这笔钱将和她呆在一起,即使我们属于短期或出于某种原因未获批准。

谢谢您的支持,并为您祈祷。

My apology that I have not updated this blog for quite a while and just recently realized that this blog still catches traffic on daily basis. Moving forward, please visit my web site at http://www.mypkudiet.com as I will keep the latest over there .

Also, if you are still using PKUDietBook 1.x version of the mobile app, please note that there has been an updated version PKUDiet2 since about 2 years ago. PKUDiet2 is made for more recent Android devices, and in the next couple of months, I will take PKUDietBook off from Google Play/App Market to avoid any confusion.

 

I have decided to stop updating this list as of July 19th, 2010 since there have been many many models coming out this year and all major US cell phone carriers now have multiple Android based cell phones in their offering lineups. Check with your preferred providers’ web site for detail.

Current Google Android Phone Models:

06/2010: SprintPCS EVO by HTC

06/2010: AT&T Aria by HTC

06/2010: AT&T Backflip by Motorola

06/2010: VerizonWireless Droid Invredible by HTC

05/2010: Verizon Wireless Ally by LG

05/2010: T-Mobile Garmin-Asus Garminfone

04/2010: Verizon Devour by Motorola

01/2010: T-Mobile-Google Nexus One.

12/2009: SprintPCS Samsung Moment by Samsung

11/2009: T-Mobile Behold II by Samsung

11/2009: Verizon Droid Eris by HTC

11/2009: Verizon Droid by Motorola

10/2009: T-Mobile Cliq by Motorola

10/2009: SprintPCS Hero by HTC

09/2009: T-Mobile MyTouch by HTC

08/2008: T-Mobile G1 by HTC

Dear PKU Community:

A new release of the PKUDietBook Mobile Application and the website http://www.mypkudiet.com are now available. The mobile application will work on any Android phone. Both the mobile application and the website are free. You can use both the mobile application and the website together or just the website or mobile application alone. In addition to new features, there are now User Guides for both the website and the mobile application. To view the User Guides, click on the User Guides tab on the http://www.mypkudiet.com website.

EXISTING USERS – WARNING – Downloading the new version will wipe out all diet record data on the mobile application. We recommend that you upload all diet records before proceeding with installing the new version from Android Market.

NEW USERS: To sign up on the website (recommended to use in conjunction with the mobile application, but not required) go to http://www.mypkudiet.com and Create a New Account under the Log In area on the upper left corner of the site. You will receive an email from the system with a temporary password. Immediately log into the site and change the password. If you want to upload your diet records from your mobile phone to the website, you will need your website log in information for your Diet Record settings on the mobile application. In the new release, you can also pull daily diet record information from the website to the mobile phone. This will allow you to use both the website and the mobile application for diet tracking.

If you would like you your dietician or doctor to be able to view your diet records, you may send a request to tlee@mypkudiet.com. Please include the First and Last Name and a valid Email address for the doctor or dietician.

To download the new mobile application, go to Market on the Android phone. Click on Apps and search for “PKU”. Click on the result PKUDietBook (TJ Lee). You will see a description of the application. To install click on the Install button on the bottom of the screen. The application will install and you should then see a PKUDietBook Icon on your applications view on your phone. Once the application is installed, we recommend you review the PKUDietBook Mobile Application User Guide for setting up your mobile application and to get a good basic understanding on using the application. We would love to hear from the PKU community if there are any features that they would like to see included in the mobile application or website. If you have any questions or ideas/feedback please email TJ Lee at tlee@mypkudiet.com.

I have just released a new update on the app and i would like you to be aware of that this release will wipe out data you currently have in the application on your mobile phone. So please upload your diet records to the server before you update.

FAQ Added

The fequently asked question was added based on people’s comments. Please click here or the blog tab above.

Here is a quick tutorial about how to use the android app PKUDietBook’s Diet Record Management feature. Sorry for the qualify of the video.

Here is a quick tutorial about how to use the android app PKUDietBook’s LowProteinFoodList feature. Sorry for the qualify of the video.

Invalid Username Error

Some of you have run into a invalid username error while using the Diet Record Management function on your mobile device. Please note that, currently, there are two credential settings in the applications, one is for search and one is for diet record upload. There is a default username/password came with the app allowing the basic search function under Low Protein Food List, while the diet record management requires a valid username and password in order to upload your diet records to the www.mypkudiet.com web site so your diet records can only be seen by you. you can register an account on the home page of www.mypkudiet.com. Registered user has many other benefits using the web site from which you can enter additional food record phe/protein/calories facts so that you can use later on your cell phone, or you can run reports on your diet records, etc.

I am planning to consolidate the two credential together, hope to see it in the next version. Thanks!

Latest Release 1.5

The latest version 1.5 has been released last night and here are some of the new features:

1. About 3000+ food records based on USDA data are added to the site and can be searched via the mobile device.

2. Food categories filter was added into the search page to better refined one’s search along with keyword.

3. An icon is added for each food on your local low protein food list to indicate whether or not the food data is from USDA, Low Protein Food List book or Personal Recipes.

4. Diet Records manage page now allows Upload function to overwrite a previously uploaded daily diet records on the server side.

5. Other bug fixes.

Let me know what else you would like to see to improve.