Sunday, December 31, 2017


As 2017 is hours away from coming to an end, so is yet another chapter in Sonya's Story.  Sitting here reviewing the past 365 days in my mind takes me on a virtual roller coaster ride complete with flashbacks.  It is always amazing to me how quickly the time has flown but how slow it feels like it is moving at the same time.  Just a year ago I was sitting at my computer writing 2016's end of the year post without a brand new baby in my arms, unsure of the trajectory of 2017, but hopeful because as of press time 2016 Sonzee was seizure free 71 days 8 hours and 26 minutes and she was alive after a touch and go 2016.  Her seizure control would last another 10 days and over the course of 6 weeks we would slowly lose any semblance of control.

Her struggles this year were different than in the years past and while they didn't require many emergent hospitalizations, it is hard to say that the year was any easier.  She did have her fewest emergent hospitalizations with the longest stay being only 8 consecutive days and only a handful of scheduled inpatient stays throughout the year.  Her health overall was relatively stable and while we didn't receive answers for everything, we did learn that her stomach dismotility was not a result of Sam's or my decisions and just part of the luck that came with her CDKL5 mutation.  The jury is still out on if that brings me any sort of peace.

In 2017 Sonzee's CVI score remained unchanged from 4/5 out of 10, and we learned she developed optic nerve damage in her eye due to her 6-month stint on Sabril.  She wore her glasses regularly and we patched her eyes 15 minutes each every day.  Her physical development was mainly unchanged with some decreases in head control and overall strength.  While it is challenging to say if was due to her mutation limitations, medications, or seizures none of the above aided with her gaining skills.  She is still able to roll back and forth, but I leave 2017 slightly disappointed with how that turned out.

2017 was the year we lost complete control of her seizures, going from 310 episodes in 2016 to 595 episodes.  While numb to watching these episodes on repeat daily, this was the year the deep-rooted fear of "is this the seizure that takes her" mixed with the pleads of "please take all of this away from her" planted themselves into my mind.  It was the year we were forced to use her rescue meds for the first time, and (sadly) now have to use on a weekly basis.  It was a year Sonzee failed an additional 3 seizure medications, we had to finally accept CBD wouldn't be her miracle and she underwent surgery to have the Vagal Nerve Stimulator (VNS) implanted.  It was the year we essentially threw everything we had at her seizures and inevitably fell completely short.

2017 was the year Sonzee turned two and officially became a toddler thus entering the dreaded CDKL5 toddler years.  It was the year she received her first pair of AFOs and Spio suit, two items that will provide her body added support.  She was approved for a communication device and she communicated to us she loves Bruno Mars.  It was the year she went to the dentist for the first time, experienced her first cross country road trip, and met Harper's amazing family in person.  2017 was the year Sam made me realize that no amounts of physical or alternative therapies no matter how expensive, will change who Sonzee is and we decided to encourage her love of being in pool and stopped therapies that won't necessarily be beneficial to her.  

2017 was a year that trampled my spirit to the core and the year I wrote my fewest blog posts.  It was a year that tested every single aspect of my faith and left me with pieces of doubt and many questions.  It was a year that I wanted to admit defeat and just give up on trying to beat CDKL5.  It was a year that I constantly questioned who allows a child to suffer so often and in so many ways.  It was a year that left me feeling continuously broken and challenged to find any ray of hope.  As we close out 2017 I feel my strength has been depleted and just like turning the page to the next chapter in any good book, I will wake up tomorrow in the new year of 2018, eager to see what will be written on the pages ahead.

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