Thursday, June 10, 2010

Not a bad day today. I have shortened the time between meds and feeding to 45 min. and it seems to be working better. It means he is getting meds every hour and a half - since we started out at every three hours this is half the time it should be. It seems to be working but still not too close to the protein feedings. I hope so. I will try it for a few more days and see what happens. So far I have seen absolutely not signs of the dyskinesia or low blood pressue which are the complications of too much meds. I do think the more meds he gets the more saliva and mouth sensations he gets but we cannot do a lot about that at this time. Just keeping him "on" with the meds is my current goal.
The difficulty with this approach is having to be on a 45 min. schedule - I thought every hour was bad but this is much worse. Hard to remember each time but I am sure we will get used to it after awhile. If I can just remember to turn that timer on again every time it rings!!!!
We had to cancel the speech therapy last week as John was having such a bad day, so we will try and go to Surrey hospital tomorrow for that. Appointment is for 2pm.
I would have to say this was a one thumbs up day - PTL.
Prayer requests:
- for John to sleep through the whole night
- for the speech therapist to be able to help him in that area
- for the meds to work better
- for Bev to be able to stay on schedule and get the shopping and other things done as well.