Some Thoughts.

If you are friends with me on FB then you know this was my status for today-"I am completed sickened. I was researching the stroke medicine Benaiah was put as a 3 month old baby here in Ukraine. Come to find out the seizure medicine they started him on was for head drop seizures which got much worse in the states. If we would of stayed in Ukraine and kept him on his meds, I wonder what would of happened. Instead we went to the States, had a dumb neuro who wouldn't admit he was having seizures. So for over 8 months he had seizures. Thank you Lord for taking care of us here in Ukraine."  

The whole reason that I went back and translated Benaiah's medical records from when he was 3 months old was because a new treatment for stroke was brought up in my CHASA Pediatric Stroke group and I mentioned that a Neurologist here in Ukraine gave Benaiah a special post stroke med and also started him on a seizure med because of his thumper rabbit leg shaking.  Wow, I didn't realize that since I took Ukrainian lessons years ago that I would be able to actually understand what the doctor said.  It probably is good that this was over 4 years ago cause it really bothered me knowing that for 8+ months Benaiah had seizures that were never treated because a Neurologist in Chicago( an old lady from Denmark who should not be practicing anymore) refused to listen to me but only went with what her EEG showed without even acknowledging that a child can have seizures and have a clear EEG.  It is beyond me as Mike W says to catch a seizure on an EEG is like playing the lotttery and it is much better to listen to the parents as they know their child.  Thank you Mike W, we love you!  


Benaiah's seizures have been prettty stable and infact today marks 17 weeks seizure free.  We of course are thrilled.  But the Apraxia thing is throwing me off.  Benaiah could say the k sound but suddenly it has disappeared and been replace with the t or p so cup is pup or cake is take.  It is really bothering me alot but today I am proud of my little man.  He worked in his workbook and wrote the number 1 and also has been spelling with Rocket Speller on his Ipad.  He spelled twig, scooter, blender.  He obviously is learning his letters.  Here are some pictures of him working.  He holds his pencil beautifully!