Author: Hendrix Kunze

🌟 Merry Christmas! 🎄

Since I’ve discovered the full extent of my heavenly abilities, I’ve been granting requests and sending signs nonstop. 😌 Have you seen them? I’m especially good at showing love, painting sunsets, and helping with difficult situations. Feel free to send me your requests, even if it’s just for a heavenly hug. 🤗

Update: My parents received my genetic testing results. I did end up having one gene difference that stood out. It is currently so rare that the medical community doesn’t know what it does yet. However, through NIH, there is one family linked to Johns Hopkins Hospital that had 3 sons with the same mystery gene. We all had low tone and heart conditions, but unfortunately all three of the other boys passed away younger than me. My family and I feel extremely blessed to have had so much time together. 💗 Overtime, we can focus on using our experiences and the medical information collected to find out more about our mystery gene and hopefully help other families. 💞

With 2018 just around the corner, wishing everyone a joyous and love filled holiday season and new year! I’m looking forward to hearing your requests. 😇

Love from Above,
Hendrix

Hello my loving family and friends!

Just like many of you going back to school, I’ve been busy learning the ropes of my new domain. I have to say, I miss you all greatly, but am enjoying my new found freedom. 👼 Don’t worry though, this includes smiling down on you and constantly sending my love. 😍 Some of you are definitely keeping me busier than others, but please know I hear each kind request and prayer, and can feel every loving thought and memory. Your presence together and around the world is truly breath taking.

Thank you for spending a few moments to think of me when you watch a sunset 🌅, especially during my Sunset Hangout a few weeks ago. There were well over 100 people who stopped by or stayed to share a beautiful life moment together. My parents and I are eternally grateful for your continuous love, support, and stream of sunset pictures. They will be creating a way to share all the sunsets soon. Thank you also for allowing them to take one day at a time as they figure out our next family adventure – we’re forever three. 👨‍👩‍👦

Love from Above,
Hendrix

*My wish of being home and smelling the ocean air was granted for ONE whole day. 💗 It was glorious to actually sleep in my own bed and snuggle with my parents whenever I felt like it. 😍

*On saturday evening however, everything turned upside down when my body decided to take me on another wild ride. It all started when my breathing became difficult and lips turned blue. Mommy called the 911 (thank you Lake Street Fire Department for arriving in minutes!) and then Daddy and I got to ride in an ambulance to the nearest hospital. Once there, I was a specialty case so they had an EXTREMELY hard time helping me get stable.

Over the next 3-4 hours there were several failed IV attempts (including drilling into my leg bones) and close to 10 tries to correctly place a breathing tube. At one point, I even took a short vacation to say hello to the other side for a few minutes. Once I had a working breathing tube (thank you to the amazing anesthesiologist who arrived towards the end!) and an emergency central line placed (thank you to the CHOC doctor who drove to another hospital to help me!), I was finally stable enough to be transferred to the pediatric hospital.

I’m currently peacefully sedated in the PICU on a ventilator and receiving everything through my central line. I’m stable enough for the moment, but keeping everyone on their toes by desatting and having varying lab results. Today I completed a chest X-ray and ultrasound, echo of my heart, and brian MRI. We are waiting for the final MRI results and continue to be a mystery baby. Hopefully, some of my labs and tests will provide additional information to figure out what caused me to react this way and how to help me get better.

Even though this has been my most critical set of events to date, this is not my first rodeo being inpatient. I’m going on 31 days out of the last 37 at the hospital. Let’s just say I’m getting to know all of the staff and medical teams really well. The neuro floor even calls me their mascot since I’ve spent the most time there. 😁 For now, I’m just happy to be well cared for in my home away from home.

Thank you for your love, support, positive thoughts, and prayers. I can feel them all as I allow my body to heal and sleep this one off.

All My Love,
Hendrix (and family)