{"id":281,"date":"2012-03-13T23:37:05","date_gmt":"2012-03-14T03:37:05","guid":{"rendered":"http:\/\/blogs.bu.edu\/relwy\/?p=281"},"modified":"2012-11-02T20:20:10","modified_gmt":"2012-11-03T00:20:10","slug":"childrens-hospital-boston-listens","status":"publish","type":"post","link":"https:\/\/blogs.bu.edu\/relwy\/2012\/03\/13\/childrens-hospital-boston-listens\/","title":{"rendered":"Children&#8217;s Hospital Boston Listens!"},"content":{"rendered":"<div id=\"attachment291\" style=\"width: 160px\" class=\"wp-caption alignleft\"><a href=\"http:\/\/blogs.bu.edu\/relwy\/files\/2012\/03\/IMG_0885.JPG\"><img aria-describedby=\"caption-attachment291\" loading=\"lazy\" src=\"http:\/\/blogs.bu.edu\/relwy\/files\/2012\/03\/IMG_0885-150x150.jpg\" alt=\"Ben with the fish at Children&#039;s Hospital Boston, 2007\" width=\"150\" height=\"150\" class=\"size-thumbnail wp-image-291\" \/><\/a><p id=\"caption-attachment291\" class=\"wp-caption-text\">Ben with the fish at Children's Hospital Boston, 2007<\/p><\/div>\n<p>\nI love it when I feel heard. Not just head-nodding or pretend listening, but the kind of listening that leads to action. Children&#8217;s Hospital Boston has <em>really<\/em> heard me.<\/p>\n<p>Today, Ben, my husband Sherin and I attended one of Ben&#8217;s many orthopedic appointments. Ben sees orthopedic specialists for his hips, knees, wrists\/elbows, spine and also a general orthopedist. We are very familiar with this department.<\/p>\n<p>Years ago we decided that these multiple-times-a-month appointments would only be manageable if we split up&#8211;I do one, Sherin does another. But some appointments are important enough for a &#8220;command performance&#8221;, which means we both go.<\/p>\n<p><script type=\"text\/javascript\">\/\/ <![CDATA[\r\n(function(d, s, id) {\r\n  var js, fjs = d.getElementsByTagName(s)[0];\r\n  if (d.getElementById(id)) return;\r\n  js = d.createElement(s); js.id = id;\r\n  js.src = \"\/\/connect.facebook.net\/en_US\/all.js#xfbml=1\";\r\n  fjs.parentNode.insertBefore(js, fjs);\r\n}(document, 'script', 'facebook-jssdk'));\r\n\/\/ ]]><\/script><\/p>\n<div id=\"fb-root\"><\/div>\n<p><script>(function(d, s, id) {\r\n  var js, fjs = d.getElementsByTagName(s)[0];\r\n  if (d.getElementById(id)) return;\r\n  js = d.createElement(s); js.id = id;\r\n  js.src = \"\/\/connect.facebook.net\/en_US\/all.js#xfbml=1\";\r\n  fjs.parentNode.insertBefore(js, fjs);\r\n}(document, 'script', 'facebook-jssdk'));<\/script><\/p>\n<p>Ben&#8217;s had some numbness in his shins since his November 2011 surgery and we wanted to follow up on this. It was also time for new xrays to track any changes in the knee bone growth. But really&#8211;I love this surgeon. He&#8217;s amazing. He emails me, he calls my cell phone, I have his cell and home phone numbers which I only use when he tells me to call him, and we even invited him to Thanksgiving dinner. He considered it, but decided he should probably be with his own family, but Sherin&#8217;s unconventional swordfish dinner was tempting!<\/p>\n<p>We&#8217;ve always had terrific communication with this surgeon. This isn&#8217;t my point of this post. <\/p>\n<p>My point is that I have been telling Children&#8217;s Hospital, and their <a href=\"http:\/\/childrenshospital.org\/patientsfamilies\/Site1393\/mainpageS1393P0.html\">Center for Patients and Families<\/a>, that parking rates for families of children with multiple-week (or heaven forbid, multiple-month), long-term hospitalizations is just outrageously expensive. In 2006-2008, Ben had several multiple-week hospitalizations related to his two tracheostomy surgeries, pneumonia, and two femoral osteotomies. All of these involved ICU stays. Charlotte was 9 months old in 2006, and Lucy, who was 8, also needed her parents. Sometimes we drove in an out of Children&#8217;s Parking Garages 3 times a day&#8211;each entrance at $9.00 a pop, the discounted parent rate. Multiply that $27 x 14, 21, 28 or longer, and you get the idea of what just <em>parking <\/em>costs are incurred during a child&#8217;s health crisis. Never mind the eating on the go and the out of pocket health care costs.<\/p>\n<p>Today, when I was paying for parking, I noticed a brochure entitled &#8220;Family Extended Stay Parking&#8221;. Intrigued, I read it on the spot. It says:<\/p>\n<blockquote><p>Long term visitors can now enjoy the freedom to come and go without needing to visit the cashier stations. With a minimum up front purchase of one week for $54, you&#8217;ll pay only ONE LOW DAILY RATE of $9.00 (my capitals) regardless of how many times you exit the garage. <\/p><\/blockquote>\n<p>Hallelujah! I, and hundreds of other parents, have been heard! <\/p>\n","protected":false},"excerpt":{"rendered":"<p>I love it when I feel heard. Not just head-nodding or pretend listening, but the kind of listening that leads to action. Children&#8217;s Hospital Boston has really heard me. Today, Ben, my husband Sherin and I attended one of Ben&#8217;s many orthopedic appointments. Ben sees orthopedic specialists for his hips, knees, wrists\/elbows, spine and also [&hellip;]<\/p>\n","protected":false},"author":2966,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[500,7663,11811,206],"tags":[7664,252,11815],"_links":{"self":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts\/281"}],"collection":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/users\/2966"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/comments?post=281"}],"version-history":[{"count":32,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts\/281\/revisions"}],"predecessor-version":[{"id":811,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/posts\/281\/revisions\/811"}],"wp:attachment":[{"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/media?parent=281"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/categories?post=281"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.bu.edu\/relwy\/wp-json\/wp\/v2\/tags?post=281"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}