The process of taking Sarah off treatment has been easy in some ways and in other ways it required adjusting our schedule.
Allowing her to sleep through the night has influenced the time she wakes up and her nap schedule. When I would feed her during the night, she would usually sleep-drink her 2am bottle and 7am bottle and then sleep until 9 or 9:30am. Now she is waking anytime between 6:30 and 8:30am. She is also taking two longer naps during the day.
Stopping the carnitine was easy. Sarah quite enjoyed the carnitine as she got older. She was a pro at taking it with her bottles. I regret not documenting it on video. I did try to take some pictures of her one day when she was sucking on her carnitine syringe.
I've noticed her urine smells differently now. I always thought her urine smelled weird, not fishy like some people complain of when they are taking carnitine supplements but it was distinct. Now it smells less distinct.
She seems to be adjusting fine to the whole milk mixed with her Lipistart. At first she was drinking less of her bottles but now she is drinking as much as usual.
Allowing her to sleep through the night has influenced the time she wakes up and her nap schedule. When I would feed her during the night, she would usually sleep-drink her 2am bottle and 7am bottle and then sleep until 9 or 9:30am. Now she is waking anytime between 6:30 and 8:30am. She is also taking two longer naps during the day.
Stopping the carnitine was easy. Sarah quite enjoyed the carnitine as she got older. She was a pro at taking it with her bottles. I regret not documenting it on video. I did try to take some pictures of her one day when she was sucking on her carnitine syringe.
I've noticed her urine smells differently now. I always thought her urine smelled weird, not fishy like some people complain of when they are taking carnitine supplements but it was distinct. Now it smells less distinct.
She seems to be adjusting fine to the whole milk mixed with her Lipistart. At first she was drinking less of her bottles but now she is drinking as much as usual.
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