{"id":783,"date":"2017-02-05T13:16:17","date_gmt":"2017-02-05T18:16:17","guid":{"rendered":"http:\/\/www.calliegolden.org\/blog\/?p=783"},"modified":"2017-02-05T14:23:20","modified_gmt":"2017-02-05T19:23:20","slug":"happy-8th-birthday-callie","status":"publish","type":"post","link":"https:\/\/www.calliegolden.org\/blog\/happy-8th-birthday-callie\/","title":{"rendered":"Happy 8th birthday Callie!"},"content":{"rendered":"
\"Callie

Callie enjoying our big snowstorm last month.<\/p><\/div>\n

Callie is 8 today! She\u2019s very excited about the big day, just like any 8-year-old would be.<\/p>\n

Days like this remind us how normal our lives are, despite the time and effort Callie\u2019s care requires. We have support from so many people \u2014 nurses, people who have given money, Hospice of the Piedmont, co-workers who generously prepare a meal for us every week.<\/p>\n

We are grateful for this help because it helps Callie live a life that is not defined by her diagnosis. Life seems so normal that, sometimes, when someone asks how Callie is doing, it takes us a second to recall\u00a0the details of her daily challenges.<\/p>\n

This sense of normalcy has been disrupted\u00a0over the past six weeks, ironically, by a piece of very good news. The FDA on Dec. 23 approved a treatment for spinal muscular atrophy. The drug, Spinraza<\/a>, could be available for Callie this spring or early summer. Had this drug been available when Callie was younger, it might have rescued her from the devastating effects of SMA.<\/p>\n

Now, though, SMA has twisted her spine. She has contractures, subluxations, almost no muscle mass. She is weaker and more vulnerable than ever. She can sit up for shorter time periods. She depends on her bi-pap machine for breathing support every day. This medicine\u00a0has arrived too late to prevent these effects for Callie.<\/p>\n

But her spirit is so strong, and we\u2019ve learned not to underestimate Callie\u2019s determination. So over the past few weeks, we have been considering whether this new treatment could help Callie even in small ways. We know it won\u2019t reverse the damage SMA has done to her body. But could it help her stay\u00a0in her power wheelchair longer, giving her more independence? Could it give her enough strength to sit up longer, which could enhance her quality of life by allowing her to interact more with friends and family?<\/p>\n

\"callies-cake\"Or would the treatment only slow the progression of her condition, requiring her to endure more pain with little or no benefit to her quality of life? There are no simple answers.<\/p>\n

Next month we have an appointment with a neurologist, and we\u2019re hoping he will provide some more information to help us determine whether this new treatment would be good for Callie.<\/p>\n

Until then, she\u2019ll celebrate her birthday with food from Barberito\u2019s, one of her favorite restaurants, and a cake with a snowman family on it that Callie helped design. This coming week she\u2019ll go to school hoping the cafeteria will serve her favorite lunch, beefy nachos. She\u2019ll watch her favorite shows, Sofia the First<\/em> and Phineas and Ferb<\/em>. She\u2019ll draw pictures, tell jokes, and live her life.<\/p>\n","protected":false},"excerpt":{"rendered":"

Callie is 8 today! She\u2019s very excited about the big day, just like any 8-year-old would be. Days like this remind us how normal our lives are, despite the time and effort Callie\u2019s care requires. We have support from so many people \u2014 nurses, people who have given money, Hospice of the Piedmont, co-workers who […]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"no","footnotes":""},"categories":[4,6,5],"tags":[],"class_list":["post-783","post","type-post","status-publish","format-standard","hentry","category-daily-life","category-health","category-holidays"],"_links":{"self":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/783","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/comments?post=783"}],"version-history":[{"count":4,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/783\/revisions"}],"predecessor-version":[{"id":789,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/783\/revisions\/789"}],"wp:attachment":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/media?parent=783"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/categories?post=783"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/tags?post=783"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}