<?xml version="1.0" encoding="UTF-8"?><rss xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:content="http://purl.org/rss/1.0/modules/content/" xmlns:atom="http://www.w3.org/2005/Atom" version="2.0"><channel><title><![CDATA[RSS Feed]]></title><description><![CDATA[RSS Feed]]></description><link>http://direct.ecency.com</link><image><url>http://direct.ecency.com/logo512.png</url><title>RSS Feed</title><link>http://direct.ecency.com</link></image><generator>RSS for Node</generator><lastBuildDate>Sat, 16 May 2026 11:34:35 GMT</lastBuildDate><atom:link href="http://direct.ecency.com/@coasion/rss" rel="self" type="application/rss+xml"/><item><title><![CDATA[EFMP]]></title><description><![CDATA[Original Post: I remember sitting at my oldest healthy baby check up and looking at a form that asked if we were EFMP. I had zero clue what it stood for or that we would come to unfortunately understand]]></description><link>http://direct.ecency.com/life/@coasion/efmp</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/efmp</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 19 Apr 2018 03:49:06 GMT</pubDate></item><item><title><![CDATA[You are Their Biggest Advocate]]></title><description><![CDATA[Original Post: “You know your child best.” “You are your child’s biggest advocate.” These are two sentences I hear so often from doctors, therapists, and nurses as they encourage me to advocate for my]]></description><link>http://direct.ecency.com/life/@coasion/you-are-their-biggest-advocate</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/you-are-their-biggest-advocate</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 19 Apr 2018 03:43:42 GMT</pubDate></item><item><title><![CDATA[The Busy Season]]></title><description><![CDATA[Original Post: We have been so busy since our move to Vegas, I’m sorry I haven’t had a chance to update our blog lately. But hopefully I’ll be able to dive back in. Our list for Laura’s appointments is]]></description><link>http://direct.ecency.com/life/@coasion/the-busy-season</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/the-busy-season</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 18:05:54 GMT</pubDate></item><item><title><![CDATA[Why I Want a Cure]]></title><description><![CDATA[Original Post: Imagine: Your daughter comes home from school with bruises on her body. No one said anything to you at pick up,no note, no email. You look at your beautiful kid and wonder what happened.]]></description><link>http://direct.ecency.com/life/@coasion/why-i-want-a-cure</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/why-i-want-a-cure</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 17:54:21 GMT</pubDate></item><item><title><![CDATA[Shared Time]]></title><description><![CDATA[Original Post: CharlienLauraSomething that I have feared is that Laura would take time away from Charlie. That I would spend more time trying to help her with her needs and I wouldn’t be able to give Charlie]]></description><link>http://direct.ecency.com/life/@coasion/shared-time</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/shared-time</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 17:42:42 GMT</pubDate><enclosure url="https://i.ecency.com/p/2gsjgna1uruvUuS7ndh9YqVwYGPLVszbFLwwpAYXZ5PD4CcU1sQmEUYe9xTByYgjNBSpgfHKADof2kaZJkHanxkgf6KUShymZqaQHkgcXsKaHnqDUA?format=match&amp;mode=fit" length="0" type="false"/></item><item><title><![CDATA[A Season of Waiting]]></title><description><![CDATA[Original Post: So we have had a lot of people asking so I’ll update. No, we don’t know where we are going yet. No, we have no idea when we will find out. And yes, I’m over it. We do know Laura’s developmental]]></description><link>http://direct.ecency.com/life/@coasion/a-season-of-waiting</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/a-season-of-waiting</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 17:36:12 GMT</pubDate></item><item><title><![CDATA[Surprising my Family!]]></title><description><![CDATA[Original Post: I had so much fun surprising my family with a visit home. While Germany has been an amazing home it is more AMAZING to be home. Today is my birthday and I get to see my youngest sister play]]></description><link>http://direct.ecency.com/life/@coasion/surprising-my-family</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/surprising-my-family</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 17:31:06 GMT</pubDate></item><item><title><![CDATA[Saying Goodbyes]]></title><description><![CDATA[Original Post: So a few days ago Charlie had to say goodbye to her first best friend. We met them at the park so they could play one last time and as we left Charlie looked up at me and asked if her friend]]></description><link>http://direct.ecency.com/life/@coasion/saying-goodbyes</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/saying-goodbyes</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 17:11:36 GMT</pubDate></item><item><title><![CDATA[Struggling with Why]]></title><description><![CDATA[Original Post: It’s a few weeks since we found out Laura’s diagnosis. To say it’s been a tough couple of weeks would be an understatement. Charlie isn’t handling these changes well. I’m grieving still]]></description><link>http://direct.ecency.com/life/@coasion/struggling-with-why</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/struggling-with-why</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 16:59:09 GMT</pubDate><enclosure url="https://i.ecency.com/p/2gsjgna1uruvUuS7ndh9YqVwYGPLVszbFLwwpAYXZ1vxbZefYb2bZX9UsUVwm94HYgC5E6xmVQtVHudJ1u7seXUFtBG6y1cN4NvpgK28u1eLdXQVre?format=match&amp;mode=fit" length="0" type="false"/></item><item><title><![CDATA[Results]]></title><description><![CDATA[Original Post: Well here we are about 3 and a half weeks after Laura’s test was taken. About 3 weeks before we were supposed to get results and we have results. Laura tested positive for Angleman Syndrome.]]></description><link>http://direct.ecency.com/life/@coasion/results</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/results</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 16:53:03 GMT</pubDate></item><item><title><![CDATA[Faith Refined by Fire]]></title><description><![CDATA[Original Post: On the way back to the hospital I just kept thinking, “why is this happening to us? God just please heal these girls bodies.” Charlie’s fever had come back that night/morning. We still don’t]]></description><link>http://direct.ecency.com/life/@coasion/faith-refined-by-fire</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/faith-refined-by-fire</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 16:43:06 GMT</pubDate></item><item><title><![CDATA[Homburg Hospital Update]]></title><description><![CDATA[Original Post: I took laura into see her developmental pediatrician on Friday because she started running high fevers like her sister and it looked as if Laura was having small seizures. if you have ever]]></description><link>http://direct.ecency.com/life/@coasion/homburg-hospital-update</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/homburg-hospital-update</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 16:35:21 GMT</pubDate></item><item><title><![CDATA[Bye-Bye Alaska]]></title><description><![CDATA[Original Post: So much has happened in the last two weeks. The positive first, I had the BEST time off in Poland. Lots of shopping and bonding with some amazing women. I needed that so badly. Especially]]></description><link>http://direct.ecency.com/life/@coasion/bye-bye-alaska</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/bye-bye-alaska</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 16:27:03 GMT</pubDate></item><item><title><![CDATA[Christ’s Strength]]></title><description><![CDATA[Original Post: What a week! We have had some tests of Laura’s come back inconclusive and have had to redo them several times. And I’ll be honest I was getting mad. I felt like a soda bottle that someone]]></description><link>http://direct.ecency.com/life/@coasion/christ-s-strength</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/christ-s-strength</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 16:15:36 GMT</pubDate></item><item><title><![CDATA[Laura’s Development]]></title><description><![CDATA[Original Post: We have had many people pray for Laura. From thinking she had thyroid issues to being Failure to Thrive. From trying to rid my diet of all of her allergies and finding the right medication]]></description><link>http://direct.ecency.com/live/@coasion/laura-s-development</link><guid isPermaLink="true">http://direct.ecency.com/live/@coasion/laura-s-development</guid><category><![CDATA[live]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 16:09:15 GMT</pubDate></item><item><title><![CDATA[Crow Family Blog]]></title><description><![CDATA[I will be transferring my blog over to Steemit. I will Post the original link. Original Posting: A big Hello to all of you reading this. I appreciate you taking the time out of your day to be curious about]]></description><link>http://direct.ecency.com/life/@coasion/crow-family-blog</link><guid isPermaLink="true">http://direct.ecency.com/life/@coasion/crow-family-blog</guid><category><![CDATA[life]]></category><dc:creator><![CDATA[coasion]]></dc:creator><pubDate>Thu, 23 Nov 2017 16:04:09 GMT</pubDate></item></channel></rss>