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10/13/26  3:25 pm
Commenter: Theresa R

Strong Opposition to 56-Hour Cap: Protect Severely Disabled Families
 

My daughter is a severe and profoundly brain damaged due to premature birth level 10 brain hemorrhage requiring a Ventricular Perineal shunt pump due to severe hydrocephaly . She is spastic throughout entire body with exception of left arm and is completely dependent on myself to maneuver and provide all essential daily needs . She is non verbal has daily seizure activites especially facial constant requiring several medications 3 times daily, She has hip dysplasia both left and right . She cannot stand or bear weight requires transfer by myself from bed to wheelchair several times daily which is exhausting, also requires ROM exersize and is incontinent .

my daughter has severe pain episodes around the clock where she screams outloud is deafening..my husband lives in a studio backyard due to extreme noise she often cries and is heartbreaking to experience her behaviors . She has an eating disorder due to her severe hydrocephaly motor skills are very limited she cannot chew solid food and relies on liquid nutritional supplements for nutrition. Needs monitoring constant for seizure activity. Her around the clock care is essential and always unpredictable. She deserves her fulltime care provided best by myself with supervision help from agency moms in motion 

CommentID: 242341