Ups and Downs

This has been a week of adjustments, for all of us. New surroundings, new doctors, new nurses, new schedules, etc. Lily has had her ups and downs. First it was weening her off some medications because they felt she was too sedated, but maybe that was too aggressive because she went to the other extreme. She was so agitated one of the days that wasn’t able to participate in any of her therapies for the entire day. But then she was uncomfortable anytime she was fed so they stopped her feeds for nearly 36 hours to do some GI studies. All test came back clear and her feeds resumed. They added a new medication which seems to help her stay calm, we just don’t want her too calm where she is too sleepy for therapy. But her tone is setting in so we need to keep her a loose as possible. She did have a very encouraging OT session yesterday where she was focusing and tracking objects in all directions. And she is continuing to do so on a regular basis. She has no therapies today. Tomorrow we will start a new week and pray for baby steps everyday.

Tomorrow is the first day of school. Lily would be starting 4th grade. Her little sister will be starting 1st grade. I know it’s going to be a tough day for us and for families at Our Lady of Fatima Parish School in San Clemente. It is a close knit school with one class per grade. Lily has been with the same classmates since kindergarten. I know it wont be the same without Lily. But we are dedicated to her recovery and we have high hopes that she will join her class one day.

Thank you for your continued prayers and support, we are grateful.
God bless,

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