My Days and Nights
Arianna weighs 93 pounds now and she is fully dependent on me to provide her with everything. I keep a baby monitor on my nightstand. On a good night, she requires only one or two repositionings. A bad night requires six to eight position changes. If she is in too much pain, I will administer Tylenol. Constant assessment and evaluation of her cooing, crying or laughing helps me determine what she needs or wants in that moment. She is fed four times a day, medicines are administered five times daily, suctioning and breathing treatments are performed as needed. She also requires prune juice regularly and other means to help her maintain a stable digestive tract. Arianna will be in diapers for the rest of her life and will have to be changed up to eight times a day unless I can get her to utilize a communication device, something that is in the works.
When her daily schedule is disrupted by a transportation, scheduling or school issue (i.e., a late pickup from a doctor or lengthy pick-ups and drop-offs with Paratransit) she is subjected to more pain from being kept in one position for too long.