As Andrew’s brain calms down, his quality of life has dramatically improved in the past month.
Before: There was a two-month period when Andrew would regularly go almost twenty-four hours without any sleep.
After: Andrew now goes to bed around 9:30 p.m. and wakes up around 6:30 a.m. He also has started to take naps during the day just like other babies his age.
Before: Andrew lost his ability to smile and would
cry screech all day and night in pain.
After: Andrew still has a couple of tantrums a day but spends most of the day smiling, cooing, and gazing off into the distance.
Before: With the mere touch of a bottle’s nipple or spoon to his lips, Andrew used to shriek, recoil and cry; he had developed an oral aversion to anything touching his mouth.
After: Andrew now happily drinks from his bottle and has been making great strides in terms of eating solids.
Before: Andrew used to require constant and very aggressive MOTION and TOUCH. So much so that when we would take him out for doctor’s appointments, people in the waiting room would watch, horrified, as we jumped up and down and smacked him really, really hard in repetitive motion. At home, this translated to Andrew being held constantly. The only respite we had was to put him in his bouncy chair and aggressively rock him with our foot (of course, the regular bouncing feature was not aggressive enough). The bouncy chair would follow us all around the house: We’d wash dishes at the sink while bouncing his chair with one foot. Change his sister’s diaper on the floor while one leg was bouncing the chair. Brush our teeth and change our clothes while one foot bounced the chair away. We even hired sitters to bounce him this way and that.
AFTER: Andrew still loves a good bouncing in his chair every so often, but now he has the ability to hang out on his own for extended periods of time. This afternoon, for example, he spent an hour on the couch–alone–cooing his blessed little heart out.
He is still a very sensitive baby with very real sensory issues. But after watching Andrew endure so much pain, it has been a delight for us to watch him finally be able to enjoy the simple pleasures of babyhood.