Here We go again :(

Well, a lot has happened since my last post. Oh Boy, where to start?
First the doctors tell me thay can't stop the seizures completley..and i fall apart and put myself back together.
Then the Doctors tell me they want me to take my baby home, not quite the same as i brought her in..i fall apart again and put myself back together.
Than, Lilly has a really bad day...had 63 seizures, in a row, all day..constant seizures for 12 hours straight...they call this a Status Epilepticus...had to have three sedating infusions to stop them...which affected her breathing and it was totally the worst she has ever been! How can she get worse, when they are meant to be helping her...so fell apart again...still putting myself back together again...feel a bit like humpty dumpty!
It was due to them stopping the Phenobarbitone, apparently she needs that! So they have started it again..but it means thay have to have a re-look at her other meds.
Thankfully she is now doin great...but it is still early days...only day 2 since the infusion...tomorrow will be the telling day..if it holds or not...day three here we come!