It's been quite difficult for mummy to update on my weeks, my days, since my last hospital stay we've experienced so many ups and downs, I haven't quite returned to my happy little self.
It started with constant involuntary twitches (spasms) something we'd not experienced in such frequency, not my usual array of "normal daily seizures" which lead mummy, daddy and my pediatrician to fear the firing within my brain, where and why? as seems typical with all my complexity we're still unclear as to why theses sudden changes in activity occur, and why at times we struggled to gain even a moments relief through emergency medications, why none of my meds were working.
I returned home with an addition to my medication regime, another medication with another side effect for me to fight, and when my constant vomiting and choking began to effect my breathing mummy decided no more, so we again tweaked my usual medications and hoped that would be enough to break the unusual cluster.
Slowly I began to feel like me, I could breath again without the constant suction, scooping and fear.
I could look at my family rather than stare expressionless at the ceiling, and I began to move and jiggle a little enjoying my bath time, I'd not done this in weeks!
my family would look at me with sadness and wonder where I'd gone, I was right here, I'm always here, fighting to get out! to get back!
My seizures now prolonged displaying again as the more familiar tonic clonic, developing towards the end into an absent seizure. Sometimes I'll recover on my own, for the days that I struggle mummy will help me back through emergency medication.
It's been a horrible couple of months, I make progress in my day only to slip back into darkness, the darkness that takes away my little kicks, claps and smiles.
I happily hold my rattle which has been placed into my hand, after a moment it falls and I try so hard to join my hands until they connect to clap! I know I'm clever! I held my rattle! and I get excited that my hands are connecting, I'm clapping! everyone is cheering! and I'm smiling and clapping, and then I screech.... a horrible breath taking, piercing sound which drops my hands to my side and leaves me powerless once more.
So full of joy, communicating with my world one moment, the next I'm left to stare, with no control, with eyes wide, with a broken little heart wondering when my next chance will return to shine .
It's been a frustrating slow and hard little road, yet our little fighter continues to break through, our strength and smiles are creeping back and more importantly our baby girl just keeps Swimming ️xox
Thank you all for your support and love, we're rolling and smiling today, :) we will move mountains once more xPurple heart
#stillswimming #stillfighting #hopeforpiper