After April 16, 2015, I never anticipated that we would ever have a question again as to the "cause" of Sonzee's symptoms...

I can't seem to shake the words Sonzee's GI doctor said to us during one of our visits over the past year when we were debating putt...

Yesterday was a big day in our house as we celebrated Sonzee's baby brother's first birthday (officially it is Wednesday, although I...

I sat down to write this post last night after the word "preparation" kept running through my mind.  I knew it would be the perfec...

Last Thursday I wrote a message to one of Sonzee's doctors after we had finished the last of two important appointments we had last week...

It has been one week and a day and a half since we have been back home.  It seems that every time this chapter repeats, the recovery is alwa...

She’s out on the corner trying to catch a glimpse Nothing’s making sense She’s been chasing an answer A sign lost in the abyss, this Met...

More times than I care to recount in the past 3 years I have made a "prayer request" post for one of our CDKL5 siblings or their f...

Last night we went to a BBQ for dinner.  Our friends have so many toys and a huge backyard playground, so it was about 5 seconds after we ar...

I have been staring at an empty blog page for close to 2 hours.  I have so many things going through my mind and emotions traveling through...

I cannot remember exactly where my mindset was in October of 2015 but being a rookie on this journey I can guess I was in a more  optimisti...

During this past pregnancy (as well as all the others) when people would ask me "do you know what you are having?" or "is the...

For the past couple of months we have been slowly weaning Sonzee from one of her medications in between increasing a new one.  The one we ar...

Within the next 2 weeks or so our little bear is going to become a big sister.  I am eager and excited about this new addition to our family...

It is 3:23am and little bear finished her seizure about 5 minutes ago.  She is back up to the 4ml dose of Zonisamide we attempted to give h...

It has taken about two weeks and endless hours of multiple people's lives (that no one will get back), but we are finally going to be ab...