Author: Hendrix Kunze

The second half of October was filled with more “firsts” and flew by so fast!

✨I enjoyed…
– my first wedding (Congrats TJ and Ronna!)
– went to my first real drinking establishment for my first fundraiser appearance (I was the “baby in the bar” and loved meeting everyone, but the noise level was a bit much for my little ears and it was past my bedtime! – a BIG thank you to ALL those involved, especially Grunions, the organizer Ryan and his family, and my Daddy’s college soccer family)
– experienced my first power outage (who knew the dark could be so fun?)
– wore my first Halloween costume (pictures below)
– had my first play dates with my BFF Nathan
– completed my first outpatient sleepover at CHOC for my second sleep study (no real sleep was actually happening though due to all the wires and annoying nasal cannula/sensors)
– and celebrated my first World Series win…GO CUBBIES!!! (my Grandpa Coffey and Chicago family are so excited!)

✨Medical Update:
– I’m still a mystery man! Genetics is working on approval for the next round of testing and hoping to start the lengthy process before the end of the year.
– My parents are in the middle of meeting the requirements for booking a consultation with a neurosurgeon at CHLA for my skull surgery (per a recommendation from a top neurosurgeon at Seattle Children’s).
– I started PT and OT. I know my Daddy is a PT but he usually works with bigger people. He is helping me with all my home exercises though!
– I’ve been breathing a lot better on my own and hope to give my monitor back soon.
– Next week I’m attempting my second diagnostic hearing test. Hopefully, I will be a “quiet” sleeper so they can collect all the information needed and I don’t have to go back a third time. Fingers crossed!

✨I’m very thankful for all of your thoughts and prayers! I can feel your love and support and know they are helping me to continue to grow and heal. 💖

💞Love Always,
Hendrix

🎉Happy 3 Months to Me!🎉

💞My recent “firsts”…
*Experiencing a Beatles Cover Band 🎵🎤🎸🎹 – earmuffs are key 🎧!
*Reaching 9.5lbs 👍
*Going on an adventure with Mommy to Central Park 🌳🌲- I slept almost the whole time!
*Hanging solo 👶 with Grandma Bec 👧
*Being such a noisy sleeper 💤 that I have to redo my 2 hour diagnostic hearing test 👂
*Completing a physical therapy evaluation 🙌👏
*Rolling onto my left side all by myself 🚼
*Actually enjoying bath 🛁 time
*Meeting Daddy’s work family ❤

💞”Firsts” I’m looking forward to:
*Halloween 👻 and going to the pumpkin patch! 🎃
*Being a wedding 💑 guest
*Replacing my current G-Tube with a more movement friendly feeding tube that’s flush with my skin 😁
*Collecting more clues to help solve my on going mystery 💫

As always, thank you for your love and support while my mystery journey continues. Wishing everyone a wonderful fall season filled with pumpkin flavored everything!

Love,
Hendrix

…and I don’t mean the sharks that have been hanging out along our Southern California coast! 🌊🌴 I’ve put in several practice hours bottle🍼feeding and finally having some good eating days. My best to date was a daily total of 46 milliliters instead of my usual 10-20. I still eat over 400 milliliters a day though, so I have a healthy goal ahead of me. I’m hoping with continued practice and my weekly feeding therapy appointments I can make additional progress.

This week I’ll be visiting my GI and pediatrician, as well as having a physical therapy evaluation. I was cleared until December for urology (hurray! 🎉), but added another medication to my list. At home, my episodes of holding my breath and heart rate dips have improved. I’m actually letting my parents 👫 get some chunks of sleep 😴 at night too! Recently, I’ve also started to like taking baths 🛁 and spending time exploring my play mat 🚼🐒🐘🐸

Cheers to another great week ahead!

Love,
Hendrix

I made it to 2 months old and experienced my first football Sunday at Mimi and Papa’s house. I think I’m going to like cheering for my dad’s fantasy teams and seeing how the returning LA Rams do this season. They didn’t have a good showing earlier in the week…I probably could’ve moved the ball better than they did! However, gotta support the home team and Mimi’s 49ers.

During the past two weeks, I passed my follow up EKG and Echo, participated in a feeding therapy evaluation, failed my 3rd hearing screening, and had my eyes checked again. I’m going to practice my listening skills and startle reflex so I can pass the 2 hour diagnostic hearing test in October and follow up with my awesome pediatric eye doctor in January. I have small optic nerves, which means he will keep a close “eye” on my vision development to “see” what I am actually able to see over time. Next week I start my weekly feeding therapy and will follow up regarding my kidney reflux. I’m hoping it’s getting better so I can stop my daily bubble gum medicine soon.

I truly appreciate all the love, positive thoughts, and prayers you continue to send my way. I hope you and your families have a wonderful weekend!

Love,
Hendrix