We are in Boston.

Well, Aurora went into cluster seizures 3 days ago... ER TRIP, IV MEDS, ect ect. We were suppose to come to Boston on Wednesday for a 5 day Video EEG... but because of this, we drove down last night...

We got here a little after midnight, and then didnt get into her EEG room until almost 4am, BOTH KIDS stayed up until about 4:30am and we all were up by 8am! TALK ABOUT BEAT!

Aurora is hooked up to the EEG, and they will start the med wean process tommorow. We already spoke with a couple of doctors, who feel that NUMBER ONE: Aurora is still not at a therapeutic level for her Depakote, so that can be why she is still having seizures, so they want to continue to increase it slowly to get to the therapuetic range, and then SECONDLY: The EEG they said will tell them so much if they catch her seizures...

So we are here. I am very tired.... The kids are tired. But we were advised to let Aurora SKIP nap and stay up until about 11-midnight tonight!

I feel so bad for her. I cant tell you how much this breaks my heart that she has to go through this! Its so unfair...

She has been stuck 5 times now.. 3 times to try to put in a IV for her stay here and then this morning for blood level draw. Then getting the leads on SHE HATES HATES HATES that, and just cries and looks at me and says "I love you Mommy, This is not good!" SOOOO SAD!

I have to so much hold my emotions in, but I feel like tonight I will take a shower here and just cry... because this is so much to go through for all of us!

I get mad and think sometimes, WHY THE HELL did this have to all happen to my daughter... but then I stop myself and think "THANK GOD I have her in my life, and things could ALWAYS ALWAYS be so much worse!"

Anyways. If you want to contact us you can call the BCH directly and ask for ROOM #917.

I will update soon :) I have limited computer access... and I cant log onto myspace... so hopefully people will know to come here!