Tag: Love Hendrix

At 4:15pm this afternoon I passed away peacefully in my parents’ arms. Moments later a Hawaiian rain shower blessing took place outside my hospital window. 🌈 Thank you in advance for giving my family time and space to process everything. Sending you all my love from above! 💞

Love Forever,
Hendrix

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)

I’m free! I was officially discharged yesterday afternoon and got to sleep in my own bed. Well, let’s be honest, I actually enjoyed sleeping in my mommy and daddy’s bed! I was not a happy camper due to teething, my new helmet, and the heat. However, today I’m feeling better just relaxing at home, enjoying cold ❄ pacifiers, and beating the heat 🌞🌡 in front of poweful fans.

I think my new medicine is working! Slowly I’m beginning to act more like myself (talkative, smiling, and observant). My infantile spasms caused me to regress, so I’m hoping I can regain my previous successes. In order to know if the medicine is really working though, I have to go back to the hospital on Monday for another overnight EEG. If they can see that my brain is no longer having it’s own spontanius intense firework shows, I can start tapering off my special medicine. If I don’t relapse, I only need about 6 more weeks of shots and hibernation. My finger are crossed since I’d love to enjoy some real summer fun before cold and flu season starts again. 😎

As always, my parents and I truly appreciate all of your love, support, thoughts, and prayers. Please enjoy some summer fun for me! 😁

Love,
Hendrix

Happy 4th of July!

Still chilling at the hospital and my mostly positive mood has actually returned. I hope it stays! I was looking forward to spending my first 4th of July watching a parade and fireworks, but know I’ll make up for it next year. Just passing the time with my parents as we wait for my independence day later this week when my medication arrives. We were able to find a short term work around until my insurance approves it. 😀

Thank you for your love and prayers!

Love,
Hendrix