{"id":297,"date":"2011-08-09T18:12:52","date_gmt":"2011-08-09T22:12:52","guid":{"rendered":"http:\/\/www.calliegolden.org\/blog\/?p=297"},"modified":"2011-08-09T18:16:34","modified_gmt":"2011-08-09T22:16:34","slug":"medical-changes","status":"publish","type":"post","link":"https:\/\/www.calliegolden.org\/blog\/medical-changes\/","title":{"rendered":"Medical Changes"},"content":{"rendered":"

It\u2019s been a while since our last post about Callie’s medical condition. Nathan and I have recently realized that the palliative<\/a> course of treatment is our long-term plan for Callie. Palliative care focuses on quality of life, even if that means life will be shortened. This is not the only route for SMA, but it\u2019s the one we feel Callie wants.<\/p>\n

When Callie saw her pulmonologist a month ago, her pulmonary function values had decreased slightly. That\u2019s not necessarily good but it\u2019s also not of great concern.<\/p>\n

Her pulmonologist also did an abdominal X-ray to assess a gastrointestinal issue which has since resolved. It was noted on the X-ray that Callie\u2019s right hip is starting to come out of joint. Callie\u2019s going this Friday for orthopedic X-rays to help map out the problem.<\/p>\n

We don\u2019t know what this means for Callie. Our instinct, after having listened to SMA orthopedic experts, is that this hip subluxation is unlikely to be fixed. We\u2019re hoping there will be a non-invasive way to slow this problem which could eventually result in a dislocated hip.<\/p>\n

We also recently found out that Callie will no longer have aquatic therapy every week. Callie has reached her peak with water therapy and unfortunately water therapy cannot be done to simply maintain abilities. Plus Callie\u2019s annual evaluation showed that after over a year of therapy, her abilities have declined.<\/p>\n

\n
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Callie with her frog and hippo, working hard with Katherine.<\/em><\/p><\/div>\n<\/div>\n

We will miss seeing Katherine, Callie’s aquatic therapist, every week. Katherine has been a key member of Callie’s health care team. The day before Callie\u2019s first birthday, when we had no idea what was causing Callie\u2019s significant delays, Katherine did Callie\u2019s initial physical evaluation. She urged us to see a neurologist, and she refused to give us a timeline for when Callie would get better — something we were later thankful for.<\/p>\n

Katherine was the first to recommend aquatic therapy and she was encouraging after Callie\u2019s devastating diagnosis. Thank you, Katherine, for setting attainable goals — and helping Callie reach them — to keep her in water therapy for as long as possible. And thanks for giving Callie her favorite pool toys, a small frog and a funny-looking hippo, on her last day of therapy.<\/p>\n

We plan to gain access to a pool since being out of water therapy will allow her weakness to progress more quickly, and Callie will continue to receive physical therapy at home where her goals will be more short-term.<\/p>\n

We believe in being hopeful yet realistic about Callie\u2019s prognosis. We try to concentrate on the positives and not worry about the future.<\/p>\n

But every now and then we get this kind of news–that system upon system is buckling under SMA.<\/p>\n

It\u2019s always a hard hit because it\u2019s true.<\/p>\n","protected":false},"excerpt":{"rendered":"

It\u2019s been a while since our last post about Callie’s medical condition. Nathan and I have recently realized that the palliative course of treatment is our long-term plan for Callie. Palliative care focuses on quality of life, even if that means life will be shortened. This is not the only route for SMA, but it\u2019s […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_s2mail":"yes","footnotes":""},"categories":[1],"tags":[],"class_list":["post-297","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/297","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\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/comments?post=297"}],"version-history":[{"count":20,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/297\/revisions"}],"predecessor-version":[{"id":318,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/297\/revisions\/318"}],"wp:attachment":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/media?parent=297"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/categories?post=297"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/tags?post=297"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}