Callie should be home from the hospital tomorrow. She is off oxygen and will be using her bi-pap to support her breathing at night and as needed during the day.<\/p>\n
She has been doing well for several days and has been free to leave the hospital room. One of her favorite destinations is the hospital lobby\u2019s fountain, especially when she has a few pennies in her hand.<\/p>\n
As our experience with SMA has expanded, so have our ideas about Callie\u2019s life. A year ago, Nathan and I thought it was just a matter of time before researchers found a cure for SMA that would rescue Callie from this condition, and maybe even reverse the damage SMA was doing to her body.<\/p>\n
That kind of hope never really dies, but we have slowly changed our attitude.<\/p>\n
Because of SMA, Callie reached her physical peak around 9 months old and has been losing physical abilities ever since. And even though we\u2019ve seen small victories, mainly due to aquatic and physical therapy, Callie\u2019s overall trend has been a steady decline.<\/p>\n
This downward trend will likely continue until Callie is too weak to breathe, even with help from the machines that are steadily becoming a bigger part of her life.<\/p>\n
So on Friday we had a meeting with Callie\u2019s dedicated medical team to discuss Callie\u2019s care and our expectations for the future. Our meeting was difficult but very helpful. It gave us a chance to make clear to everyone that Callie\u2019s quality of life is paramount.<\/p>\n
In other words, we don\u2019t want to sacrifice her enjoyment of life for the purpose of keeping her body alive as long as possible.<\/p>\n
![\"Callie](\"http:\/\/www.calliegolden.org\/blog\/wp-content\/uploads\/2011\/06\/optcallieswing1-300x214.jpg\")
Quality of life is subjective and varies from person to person; but we know Callie.\u00a0Right now, she is telling us through her body, her actions and her words that she has a great quality of life, regardless of the damage SMA is doing to her body. We believe she will let us know when she\u2019s tired. We also believe that no battles will be lost. Callie will simply find peace in knowing it’s time to leave her life with us.<\/p>\n
Nothing can prepare us for that day and time. But like all lives, Callie\u2019s impact on the world has and will extend beyond our family in ways that we don\u2019t know. When she\u2019s finished we want to find comfort in knowing that she\u2019ll be leaving behind pain, sadness and all the limitations of this life.<\/p>\n
Until then our job is simple: enjoy our time with her and help her live a meaningful life, however long or short it may be.<\/p>\n
<\/p>\n","protected":false},"excerpt":{"rendered":"
Callie should be home from the hospital tomorrow. She is off oxygen and will be using her bi-pap to support her breathing at night and as needed during the day. She has been doing well for several days and has been free to leave the hospital room. One of her favorite destinations is the hospital […]<\/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-249","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/249","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=249"}],"version-history":[{"count":15,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/249\/revisions"}],"predecessor-version":[{"id":267,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/posts\/249\/revisions\/267"}],"wp:attachment":[{"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/media?parent=249"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/categories?post=249"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.calliegolden.org\/blog\/wp-json\/wp\/v2\/tags?post=249"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}