I may not be “back in black”, but I’ve been back in the hospital for over a week. My previous follow up overnight EEG still showed slight infantile spasm activity. Due to this, I started another new medication that made me “comfortably numb” and gave Sleeping Beauty a run for her money. My neurologist saw me in the ER and labeled my reaction encephalopathy. This means my brain waves slowed way down (long period waves for all my surfing buddies!) and depressed my vital systems.
Since I’ve stopped the medication that caused my super rare reaction, restarted my first infantile spasm med again, and awoken from my deep slumber, my symptoms have evolved into involuntary movements throughout my body. While I enjoy dancing to my mommy and daddy’s music, unfortunately my body now keeps moving when they turn it off. I’m also having electrolight imbalances that cause my face to have a yellowish tint, hence my new nickname Mellow Yellow. Doctors from several specialties have consulted to try to figure out the cause(s), how to manage my symptoms, and balance out my labs. On a positive note, during this stay I’ve been training to go out on the road with Uncle David’s rock band since I’m getting very little sleep due to constantly being in motion.
So here I am now, calmly looking out my hospital window and imagining my next adventures…
imagine sleeping in my own bed,
it’s easy if you try,
imagine hanging with my cousins,
it isn’t hard to do,
some may say I’m a dreamer,
but I’m not the only one,
your thoughts and prayers contribute too,
so one day I know it will come true!
I almost forgot! I turned ONE! 😁 No real big shindig, but I did have my first taste of birthday frosting and fresh mangos. Let’s just say, I’m still uncertain about frosting but absolutely love mango! Your continuous love, support, thoughts and prayers for me and my family are priceless. Thank you from the bottom of our hearts. 💗
Love Always,
Hendrix (and family)
