What a couple days...

It has been too long since we last posted an update and frankly, things have been okay.  Compared to this time last year we have had a dramatic and favorable few months.  In July, Princess was able to successfully get off of one of her AED's (Keppra) and has likewise been able to reduce her final AED by 98% since May 2015.  It has been quite a journey and Lord willing, hopefully Princess' seizures will soon stop. 


The journey has been long and our faith has remained steadfast in the Lord who has guided us these last 12.5 years.  And with each day that seems to draw closer to being off of her final med (Onfi/Clobazam) the bad days seem all the more worse and we seem desperate to find answers as to why Princess is feeling the way she is feeling. 


These last few days have been very trying.  For some time we have tried to differentiate for ourselves moments that we call seizures (Princess generally has to lay on the ground or lay her head down covering her eyes and ears) and moments we call Events or "Push Through ONEs."  For some reason, the last few weeks have certainly had a lot more downs than ups and the last two days have certainly tried us. 


In the last two days, Princess has had nearly 40 "push through moments" that in all reality are seizures.  Though they are not as severe as her seizures, Princess is exhausted, tired, perplexed, and just worn out.  Not wanting to repeat last year as it seemed that is where she was headed, we did go to the hospital to get labs completed last night.  Thankfully, the labs were normal...good news.  Unfortunately, there was no outlier or indication as to why she was feeling and experiencing event after event. 


So as we do so often, and as you have done for us, too...We get on our knees and ask God for strength and wisdom & peace and wisdom.  Thanks for PRAYING with us and for Princess!  Thank you for your encouragement along the way!  It means the world to Princess!