Excerpt from Sonya’s Story
Within the next 2 weeks or so our little bear is going to become a big sister. I am eager and excited about this new addition to our family, yet I have not even packed my bag. (Full disclosure, I packed for Sonzee while in labor and running out the door). I really am looking forward to everything that comes with having a newborn baby, but despite the typical massive amount of pregnancy hormones circulating within my body, there is a cloud of guilt and sadness hanging over me. I do not want to assume everyone who follows Sonya’s Story understands the needs of a child like our dear Sonzee bear. I do not want to assume everyone knows how much care she requires. I try not to mention the sleepless nights encountered due to her constant alarming pulse oximeter letting me know her heart rate has skyrocketed (or on some occasions her oxygen has plumeted) and she is having another seizure. She is dependent on every level. She is unable to be left alone, she has to be buckled into swings and bouncers at all times. She is unable to be placed on the ground in a seated position “for just one minute” so something can be grabbed. She is unable to feed herself, and in fact in her case, her food bypasses her stomach and goes directly into her intestines so she doesn’t eat in the typical fashion. Her tube feedings are prepared in advanced and placed in the fridge and refilled periodically throughout the day and the night due to a continuous 20 hour a day feed. She requires medications, patching, and various position changes throughout the day on top of the daily needs of a child. Her needs are that of a newborn baby, in all ways, literally.Read Randi's Post
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Jessica brings a unique perspective to this leading epilepsy blog as she was diagnosed with epilepsy as a teen. She also brings 20+ years experience in marketing.