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mixed bag....

Posted Oct 13 2009 10:06pm
Yesterday was a bittersweet day.  Daddy left to go back to Iraq, but Hannah was seizure free!!  The first day in a nine days.  No alerts, no rescue meds, no crazy behavior!!  That was really sooo nice.  Of course, this on the eve of an ambulatory EEG.  So, I am thinking, is this the end of the valley we have been in or are we just taking a one day break???

We got up bright and early today (okay, not so bright out, quite still dark actually).  I got the boys to the sitter and Hannah and I were on the road by 6:15.  An amazing feat in itself....Hannah did FANTASTIC getting hooked up.  It is really kind of sad.  She has done it so many times that the smell and the whole drama of it, doesn't even bother her anymore.  I think she was just happy , and even said, "at least I don't have to stay 10 days or have an IV"!!!  What a trooper.  We had one of our favorite techs help hook her up.  She takes good care of my girl.  So, hoodie and hat in place (went shopping at Justice for new apparel) we were off. 

We got to school and she a little apprehensive, but went in like the champ she is.  I was sooooo proud.  I gave the teachers a couple instructions about the diary and button to push and I was off.  Hoping for the call today....the call I got every day last week....  No alert.  No seizure....No strange behavior....

WHY....WHY...WHY...  when we get hooked up to record these stupid things, nothing happens????  ARGH!  I must admit that I have rekindled that tiny glimmer of hope that maybe they could pinpoint an area where these are coming from.  Still hoping for that cure.  Resection.... 
We don't go back to unhook until 2 pm tomorrow.  There is still hope....

Meanwhile...I have been on the phone to anyone I can think of about this second denial.  The case manager got the rep to talk with Dr. Neuro today.  He is arranging to have a "peer to peer conference" with some director of appeals at TRI CARE.  He will plead Hannah's case to them.  Dr. Neuro's nurse had a very good point today....She said it probably isn't even a neurologist.  For all we know, it's a gynocologist who doesn't even know what a VNS is!!!

So we will keep on keeping on....
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