The truth hurts...

So today we met with Lauren's neurologist to go over in-depth her EEG and MRI results.  Let's just say we knew it wasn't going to be good, but......  This is two sentences of many that are word for word from the doctor that read the MRI:

Findings:
Severe cystic encephalomalacia of the posterior cerebrum bilaterally, with little or no residual brain tissue remaining in the parietal, occiptal, and posterior temporal lobe regions.  The corpus callosum is not clearly identified. 

Wow, little or no brain tissue.......our girl is a miracle, how is she here on this earth with us....the doctors at UCLA were stunned by seeing her and then reading this MRI, they don't fit together.  We have known that she is really only using her brain stem and very little frontal lobe regions that are intact.  Her seizures are orginating from her brain stem and have become quite worrisome since February. 

New plan:
We are increasing her Zonisemide gradually over the next few weeks, leaving her Keppra and Klonipin the same.  Back to UCLA on August 15-16 for another inpatient video EEG to see if the medication is doing anything to slow the seizures.  Our pediatrition is once again consulting with the Endocrinologist since we may want to consider putting her on hormone therapy to stop her precocious puberty, which the neurologist is thinking is creating all these seizures.  If we can't get them under control it is only a downward spiral, the seizures could start negitively effect her breathing (I don't even want to consider what this means) and also cause her to aspirate causing pnemonia.  Since she is only in the beginning stages of puberty this could get ugly as she progresses and if this is what is aggravating her seizures.

So here we are again, wondering, and not taking one minute for granted.  I will keep you posted.