So Kahlai so far today has 61 seizures.. sure it's less than yesterday... but lets account for the fact that he slept most of the day today and only had about 5 waking hours total. Poor baby! He is miserable... just miserable.
Tomorrow he will go in for a spinal tap, a hearing test, and a few other tests. He is tired.. exhausted rather and will not eat. In two days he has only seemed to get down a piece of bread, a roll, and a pedia sure... along with one or two bites here and there... certainly not enough to be called nourishment.... he needs to eat.
At this point I am not sure that I am convinced that the care he is getting is the right care.. or that the tests are right... or that they are really doing much. I am starting to lose my faith in the medical profession a little bit... but instead of yelling and crying at them... I just sit and listen and listen to them talk in circles... just beating around the bush in order to fill in a 10 minute time slot so that I feel like I've been "visited" by them... and must have been informed.
AUGH!
Okay okay okay... I will wait for them to research different studies and do thier "jobs" in finding what is wrong with my son. They are currently looking into Mitochondrial disease and testing for infections like meningitus.
I'm going to bed... Kahlai has a dose of meds in 45 minutes... we will have to wake him up... you have no idea how hard that is... to wake up someone who is post-ictal.... it's like they are "not home".. no lights on.... just breath... and then a cranky boy who refuses the meds when we finally do get him up... boy this is special.
To be continued.....
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