On to the next one

Apparently steroids control seizures in 70% of patients however, our sweet little girl is hanging out with the other 30%!! Isn't she a peach?!!

The EEG results weren't completely bad.  The steroids seem to have stopped the hypsarrhythmia in the right side of Charlie Claire's brain but it is still happening in the left side (if we understood the dr correctly!) So it's good that now it's only hemi hypsarrhythmia but just not good enough.  One HUGE positive is that the right side of Charlie Claire's brain (the completely healthy side) has no seizure activity! The dr's explained to us that when you have seizures they refer to you as having 2 places - the place you live and the place you go to when you have your seizures.  The place Charlie lives is completely normal which a good indication that her long term prognosis is GREAT! The other positive is that all of Charlie's seizures start from that small area of her brain that never formed properly...we hope that when they remove this area the seizures will go far far away. 

So, now we are going to start the weaning process -- not going to lie, the roid rage is draining...can't wait to have our sweet baby girl back! Charlie should be off the steroids by 2.19.  We will be starting C on Sabril shortly. This medication is extremely overwhelming to us because it comes with pretty serious side effects to Charlie's vision.  There is paper work that needs to be filled out and we have to sign off that we understand all the risks of the medication.  Charlie also needs to have an eye exam, she already had one in December so she may not need another one before we start but we really need to keep a close eye on things.  The dr said that since she won't be on this medication long term (3-6+ months) that Charlie's risks shouldn't be that high but there are no guarantees.  It just felt like a punch in the gut as we read through the initial paperwork and had to sign it.  We know that currently the benefits of the medication outweigh the risks but it's still a lot to swallow.  Again, we are hoping that this medication will keep things "calm" to buy us time till surgery.  If this one fails then the surgery may happen before CC hits 6 months.

Fun parts of our day today:
- Daddy was off from work today - we LOVE it when he is home!
- Miss Wendy, Charlie Claire's physical therapist, came over today and is really pleased that with all the seizure activity going on in C's little brain she is still really holding her own as far as development.  She explained it to me like this - do you know when you are woken up in the middle of the night and you have no idea where you are or what is going on?  That is pretty much what Charlie's world is like all the time.  Comforting huh?!
- We got to go over to Aunt Theresa and Uncle Harry's house for dinner with them, Caitlin, Nicole and Kyle! Apparently the company was just too much for Jackson and C...

Charlie Claire & Aunt T

Jackson snoozing on Kyle!