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nothing new to report...unfortunately

Posted Oct 13 2009 10:06pm
Seizures continue.  Just when we think we have a pattern figured out, or possibly a reason for an increase in seizures....it changes.  She only had one seizure last week.  ONE!!!  And yes, it was the one we caught on EEG on Tuesday.  Praise the Lord.  But, for whatever reason, they have picked back up this week.  The school called me Monday with a Blitzen alert.  Seizure wasn't too bad.  Nothing Tuesday.  School called Wednesday with another Blitzen alert.  This time he was going nuts (which usually means the seizure will be harder).  He did not let us down.  It was a doozie.  The evening proved to be okay, but she had definite sleep issues last night.  She couldn't fall asleep until 10:30 and then woke up at 2 am.  She did not fall back asleep until 5 am!!!!  whew!!!!  Definite sleep deprivation there.
You guessed it.  The school called again.  Blitzen alerted again.  Seizure was middle of the road, as far as her seizures go.

I called Dr. Neuro yesterday and today.  No return calls.  I am assuming the EEG report is not done yet or I would have gotten a call.  I am also assuming there is nothing new with the VNS saga.  Dr. Neuro is supposed to be calling TRI CARE to have a peer to peer conference to plead Hannah's case.  I don't know if that has been done or not.  We are absolutely stuck with no one wanting to pay for her surgery. 

Meanwhile, my daughter continues to beg, plead and sometime scream that she wants this surgery to help her seizures go away.  It breaks my heart.  It really does.  I want to put her on the phone with the stupid insurance company and plead her own case.
To sum it up....I am frustrated.  so frustrated..... 
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