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Showing posts from March, 2017

To My Child Who Lives in The Shadow of His Brother's Disability

Chandler, my child. My wild one. My all-boy, car loving, star wars obsessed, sweet, three-year-old. You have spent your entire life living in the shadow of Christian's disability. It's all you've ever known. You have slept on hospital couches, ridden literally thousands upon thousands of miles to make Christian's appointments, and spent most of your time as second string to Christian's internet popularity. You have sacrificed so much to be so young. You have given up a "typical" childhood. You have given up days spent with "just the three of us" as nurses come in and out of our home all week to care for Christian. You don't act like the "baby" of the family, probably because you don't get to be the baby. You have had to grow up so fast. Your brother has needed you. I have needed you. To be more independent. To help out. To carry your share and,, it literally hurts me to write this, but part of Christian's share, too.

Feeling Defeated: An Update on The Nursing Appeal

Photo Credit To Lacey Orchid Photography I received the appeal packet for Christian's nursing appeal today, have read through all 200 pages and I am feeling defeated before this appeal hearing even happens. Not because Christian doesn't qualify or need the nursing hours, but because the way the rules are written, they make it nearly impossible to overcome. He not only qualifies, if Christian doesn't qualify, you would be hard pressed to find many children who did. Tenncare is riddled with injustice and unfair practises in their appeals process and decisions of care. The appeals process is set up to work in favor of the insurance company. It would be a miracle or luck for me to win this appeal, let alone someone who isn't an attorney. The basis on which they decide care is so intertwined with literal word vomit that no rationally thinking person could have come up with it, and no average, low income family trying to understand their rights could ever possibly

What Nursing Means to Me

Christian and his nurse, Carolyn at school. Shared with permission Some of you guys have been keeping up with the issues we've been having with her insurance trying to cut our private duty nursing hours and I wanted to discuss a little about our nurses. Some of you might be wondering what exactly private duty nursing even is. Everybody's familiar with nurses, but some people aren't aware that there are situations where a nurse can work in a person's home to help care for that person. The reasons that a person may need a nurse in home are expansive, but the value that an in home, private duty nurse adds to a patient's life is consistently invaluable and backed up by research. Although I don't need a medical journal to tell me so, science and medicine prove that not only is it more cost effective to have a private duty nurse in the home for certain patients who need that type of care, it is also better for the overall health of the patient and will preven