OK, so for 2012, we will try to update as much as we can, of course with Jagger we don't have a lot of time, but if anything is happening, we will update a lot for sure (such as hospital visit, etc) but I will try to update at least every week or every other weeks even if nothing is going on. Don't forget you can add your email (on top right side) to be inform when a new entry is posted. But still come check the blog once in a while as we will try to also add pictures.
So this week has been very difficult, for some reasons, Jagger has been very cranky and refused to sleep at night, and actually just spent most of the night screaming and crying. So we had to give him adivan and morphine quite a few times this week. It works only for a few hours, so he has really not be getting any sleep. Dr. K decided to increase the Respiridon to 3 times a day (it is a neurological pain/seizure drug) and hopefully that will work, if not the next step would be to increase the Methadone, but I rather keep that as a last resort.
Last night was a little better so I hope that tonight he will be OK and that next week we will get back to normal sleep wise.
It could however be a normal progression of his disease as a lot of "Mito" kids have difficulty sleeping or staying asleep, but we just hope that is not the case. He is also teething and the pre molars are coming out so that is causing him a lot of pain.
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