Proudly Supporting all Military Families with a Special Needs Dependent
Yesterday, the orthopedic surgeon said that she needs hip surgery. According to her most recent X-ray, Addie’s left hip is 36% subluxed and it’s time to consider our options. I was told many years ago that it’s very common for kids with CP to have hip and back issues. Surgery is a high probability for children like Addie, but being as competitive as I am, I thought no way would I allow it to happen to my daughter.
And I have been doing everything in my power to prevent it from occurring. We stretch every single morning. She wears her orthotic braces for 6-7 hours a day. Addie stands in her stander. I painstakingly position her as perfectly as I can to make sure her hips are in neutral and her spine is aligned. And we stretch again every night. But it’s not enough.
It is a hard pill to swallow that her disability is stronger than Addie and I both are. For seven years, I have provided for her every need. I have fed, bathed, and dressed her every day. I have taken her to restaurants, malls, and parks. I have carried her 55 lb. body onto jungle gyms, carnival rides, dance parties, and any place that isn’t accessible enough for her wheelchair. We go to therapy after therapy and spend hours learning techniques for strength. I am a resilient caretaker who devotes my life to being my daughter’s arms, legs, and voice. And it’s not enough. I cannot fix the cerebral palsy.
And right now, I’m hurting. Ninety-nice percent of the time, I am hopeful and passionate, advocating for her every need… but not today. Today, I am stuck in the relentless grief cycle that comes roaring back every time we have a doctor appointment like yesterdays. I am heartbroken for that little girl – my happy, strong-willed baby who will need to endure a painful surgery and remain in a half body cast for months. This little girl who fights her hardest to overcome challenges will suffer with pain, no matter the option we choose.
Don’t get me wrong – I can see the signs, no matter how much I like to wear blinders. Her right leg is about 2 inches longer than her left leg. Her legs rotate inward rather than out. She ‘W’ sits. I get it – the surgery can help correct it. And without surgery, the hip will dislocate completely and she’ll be in extreme pain. Once her hip reaches about 45% subluxed, it’s impossible to bring it back. Without the surgery, she probably never walk.
The “salvage” surgery is about improving her quality of life – nothing else. And it pisses me off. March is Cerebral Palsy Awareness Month, and believe me, I AM AWARE. And I hate it right now.
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A site to discuss and learn about TRICARE Philippines Policies and Issues that are often times implemented in secret by the Defense Health Agency (DHA). Policies that result in payments at about 7.7% and 3.8% of what they should be or $328 per under 65 person instead of the expected $4,261 & $328 per over 65 person instead of the expected $8,650.
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a fun site for inclusive wellness activities for kids of all abilities
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