Here We Go Again

Charlie Claire's new medication arrived at our front door this morning.  This little box was able to make me cry.  Jason was at work already when the package arrived so he received the lovely phone call from me! I scored major wife points for that one! I know this is something we have to try in hopes of controlling C's seizures.  I also know that we went over ALL of risks with the dr and had to sign a bunch of forms saying we understood the risks involved with the medication but, for lack of a better word, I feel that we are giving Charlie poison.  I called MCV and asked for the neuro (Dr. Morton) to call me back because I needed a pep talk before I could go through with this.  Dr. Morton is very nice and called me back and explained everything to me again.  He truly feels that since Charlie Claire will be on this for such a short amount of time (less than 3-6 months) that her vision should be fine.  Again, we have no way of knowing at this time the long term problems she may have because of it but we also know that we have tried all the other options out there and this is the last one available to us.

We will start giving her the medication tomorrow morning.  Dr. Morton said it can cause irritability (not sure how we would be able to tell the difference from her current roid rage!), sleepiness, clumsiness, etc.  If she does start showing signs of clumsiness we may need to adjust her other medications.  We also started her weaning process today for the steroids, Dr. Morton said that hopefully we will start to see an improvement in her mood soon.  Sometimes I get very overwhelmed at the amount of medication going on in her little body. 

We are being cautiously optimistic about the Sabril.  We have gotten our hopes up in the past couple months only to realize that we haven't had any luck.  Even if the Sabril does work with controlling Charlie Claire's spasms she will still need to have surgery since she is still having other types of seizures in that one area of her brain. 

I know that Charlie Claire is only 4 months old but it is amazing how proud I am of her already! She has been such a trooper through all of the things we have been putting her through the past few months.  I think Jason and I are so optimistic about her future because we have a lot of faith in Charlie - especially her stubbornness! This is a very challenging time for our family but I know that we will rise to the occasion and rock it!