{"id":500,"date":"2008-11-26T01:06:49","date_gmt":"2008-11-26T06:06:49","guid":{"rendered":"http:\/\/www.tuvel.com\/blog\/2008\/11\/26\/what-do-sick-kids-have-to-do-with-social-media-part-ii\/"},"modified":"2011-06-15T16:40:57","modified_gmt":"2011-06-15T20:40:57","slug":"what-do-sick-kids-have-to-do-with-social-media-part-ii","status":"publish","type":"post","link":"https:\/\/www.tuvel.com\/blog\/what-do-sick-kids-have-to-do-with-social-media-part-ii\/","title":{"rendered":"What do sick kids have to do with social media: Part II"},"content":{"rendered":"

Our son was recently diagnosed with Perthes<\/a>. We are currently staying at the Hackerman-Patz Guest House<\/a> in Baltimore while Elan recuperates. This note is a follow-on to the original post<\/a> and continues the conversation about what sick kids have to do with social media.
\nDisclaimer: if you don\u2019t have a 10 yr old (or, think like one), some of the players mentioned here might not make sense\u2026<\/p>\n


\nUse You Tube<\/a> and other outlets to grow your brand<\/strong>– We took our son, one week out of surgery, to see the Naked Brothers band<\/a>. It was a blast. We somehow got invited backstage to party with the band. We were also pretty jazzed to meet Polly Draper<\/a>, the band\u2019s mom. You can see some of the pics here<\/a>.
\nOpening for the Naked Bros was Savannah Outen<\/a>. We know her because of Radio Disney<\/a> airplay. Her song is in heavy rotation during morning drive time. Savannah introduced herself to the crowd with two words- You Tube. Turns out that her song has something like a million views<\/a> on You Tube. She pumped her myspace<\/a> pages several times during the show and ended by taking pics of the crowd for her online scrapbook. Our son was lucky enough to meet her backstage and get this pic<\/a>, which she promptly posted to myspace.
\nTimes are a changin\u2019<\/a> <\/strong> \u2013 Doctors and their staffs, Nurses, and other health care workers routinely tell us to go online and \u2018talk\u2019 to other parents. They confirm that parents offer some of the best advice around when it comes to dealing with difficult situations. Maybe I shouldn\u2019t have been but, I was surprised to hear top surgeons tell us that parents in similar situations can offer accurate advice. This is of course true but I was still surprised to hear it. The Doctors actually encourage you to join and participate in unfiltered discussion groups. In the groups that we participate in, parents discuss and help each other arrive at pre and post-op decisions. btw, we found and connected with our surgeon through an e-mail list.
\nCommunity building ain\u2019t easy<\/strong>– Our son\u2019s website<\/a> has 2,000 visits inside of 2 weeks. Facebook<\/a> and Twitter<\/a> has been a great way to spread the word about both the website and guestbook<\/a>. Elan\u2019s built an e-mail list, people write when he doesn\u2019t post to make sure all is OK, he\u2019s already tired. Elan has added pressure that most of us don\u2019t face with his principle, teachers and many parents looking on There\u2019s a direct correlation between journal postings and guest book entries. When he\u2019s having a bad day or does something unusual, 25 people will post comments.
\nE-mail notifications has been a great way for people to keep in touch. We also send out a weekly broadcast that summarizes the week\u2019s posts. Elan is developing his own personality and learning how hard it is to build a community UNLESS you\u2019re passionate about it!
\nYou can\u2019t control your online persona<\/strong>– Some of our son\u2019s first blog sightings and postings will be about what he\u2019s currently going through. I can already see this here<\/a> and here<\/a> when I Google him. Is this a bad thing? Maybe not, I\u2019m not sure yet. One thing\u2019s for sure though- you can\u2019t control the archives!
\nNothing beats face-to-face<\/strong>– Elan is the proud owner of the new Mac Book. With Skype<\/a> and broadband access, he\u2019s able to often join his schoolmates and teachers. This is important as he\u2019ll be out of school for an extended period of time. Elan is the first student in his school to put together his own distance learning program. We were supportive but not only for the academics. As you can imagine, Elan has many friends in the 4th grade. He missed them terribly.
\nBeing able to see them during the day is a real bonus and eliminates some of the isolation. Nothing beats face-to-face though. Online interaction is a good supplement to the real deal. We\u2019ll be happy though when our son can once again be in the same room with his friends.<\/p>\n","protected":false},"excerpt":{"rendered":"

Our son was recently diagnosed with Perthes. We are currently staying at the Hackerman-Patz Guest House in Baltimore while Elan recuperates. This note is a follow-on to the original post and continues the conversation about what sick kids have to do with social media. Disclaimer: if you don\u2019t have a 10 yr old (or, think […]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[37],"tags":[74,75],"class_list":{"0":"post-500","1":"post","2":"type-post","3":"status-publish","4":"format-standard","6":"category-personal","7":"tag-elan-arnowitz","8":"tag-perthes","9":"entry"},"_links":{"self":[{"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/posts\/500","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/comments?post=500"}],"version-history":[{"count":1,"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/posts\/500\/revisions"}],"predecessor-version":[{"id":590,"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/posts\/500\/revisions\/590"}],"wp:attachment":[{"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/media?parent=500"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/categories?post=500"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.tuvel.com\/blog\/wp-json\/wp\/v2\/tags?post=500"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}