Author: Hendrix Kunze

Some have learned to call me Hendrix, however, my alias is mystery man. Just when you get to know me there is a twist. “The geneticist” was hot on my trail testing for Pallister Killian Syndrome, but I through her for a loop. The tests came back negative so they are back in the dark! She is good but she is going to have to dig deeper to figure me out(next step looking at all my genes). There is a new hot shot on the case and she is called “the pulmonologist”. She has some how figured out how to calm my apnea episodes allowing me to sleep through the past two nights. She is good, but I am planning my next move. I am trying to blend in as a normal human while I plan so I will be getting my hearing checked this week and hanging with my parents. Until next time….

Keep them guessing,
Mystery Man aka Hendrix

This past week I finally met all of my cousins and can’t wait until I’m big enough to keep up with them. We will definitely be causing mischief before our parents know it! I have also now met almost all of my grandparents and aunts/uncles, and went on my first field trip to celebrate my great grandpa’s 91st Birthday. Time sure flies when you are having fun!

My parents and doctors are still monitoring my progress closely. I’m continuing to gain weight and around 8 pounds. Just as everyone thought I might be ready to give back my home monitor, I decided to practice holding my breath and heart rate dips for longer periods of time. I’m not exactly sure why I think this is fun, but my parents definitely jump to attention when it happens! 😱🙊💓📉

As always, thank you for your love and support as I continue to learn how to navigate through this amazing adventure called life!

– Love,
Hendrix

So much for my four day fast a few weeks ago. I gained it all right back and then some! I left the hospital one week ago today at 6lbs 4oz, and yesterday weighed in at 7lbs. My GI doctor said that I’m on track to eventually catch up to the normal growth curve so I can hold steady on my current nutrition regiment for now. This week I also checked in with my cardiologist and met my pediatrician (Dr. Bennett is awesome!).

It’s not easy having so many things to follow up on and work towards at home. My assistants, Mommy and Daddy, are doing a great job helping me to figure out the best feeding schedule and keeping track of all my appointments, supplements (meds), developmental exercises, etc. I really couldn’t do it without them and the help from my team of cuddlers!

Thank you all for your positive thoughts, prayers, and endless generosity. Your love and support, no matter how big or small…or near or far, is truly appreciated. XO

Love,
Hendrix

P.S. Day naps are my jam! 💤 I also love my arms free and will do whatever it takes to escape from my swaddle. 🚼

After one month (seven in dog months) chasing the ladies in the NICU, I made it home! I made soooo many friends that I will be going back frequently to visit. All of the helpful nurses told me it’s now time for my parents to grow up and take care of me. While there, I met an older and wiser man, Nathan, that showed me the ways of the NICU. I want to give him a shout out and say you will be home soon too buddy!

As for my coaching staff (neurologist, neurosurgeon, urologist, pulmonologist, cardiologist, ENT, opthalmologist, geneticist, all my developmental specialists, etc.), I promise to keep up my training regiment and follow your strict guidelines. To all my family, friends, and fans, thank you again for your love and continued support!!! Stay tuned for my “at home” training updates and adventures🤗.

Love,
Hendrix