It has been four years today since Paul and I sat across from our doctor in Cincinnati and he gave us Keyan's diagnosis of neuropathic dysmotility. We had been on a mission for years to figure it out so as hopeless as it seemed, we also felt a great sense of relief to know what we were dealing with. At that point, we made a move towards comfort care and giving Keyan the best days that she could have every single day.
In recent months, Keyan's days have been hard...filled with pain, gagging and great fatigue. All that we thought to be normal has been disputed. Comfort care has taken on a whole different look.... one that I wasn't prepared for and one that has caught me off guard. Her doctor and nurse in Cinci say that this is how this disease progresses and that we should slow her days down in order to preserve her strength, energy, and reserve. I find myself at odds with that because we have done everything in our power to keep her woven into our busy lives but it is apparent that her body can't withstand that right now. It is so hard to wrap my head around her limited ability to interact with "life." However, as I look back at the last four years....and really the last twelve, I know that we have done everything humanly possible to give this little girl an amazing and full life....and I won't stop now, even if it looks different than it has in the past! 
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