John did not get to sleep until after 4am - so we have been tired today. However, he had quite a good day in terms of the meds working better. He is now on a regime of meds one hour and feed the next - from 6:30 am until 10:30 or 12:30 depending on when he goes to bed. They worked fine all day and he only had two times they did not hold through until the next dose one of ten minutes and one of twenty. Both in the evening. So that was better than usual.
The neurologist's nurse clinician called back today - finally - and basically said do whatever I have to do to keep him as comfortable as possible. She has ordered more meds for me from the pharmacy as with the doses closer together he is now getting the meds 9 or 10 times a day rather than 6. She will check with the doctor but does not think there is anything else that can be done to help John's body absorb the meds any better. He is just resistant to them.
A definite one thumbs up kind of day.
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