Tag: Love Hendrix

UPDATE: I started my new medication two days ago. The good news is that I went from having infantile spasms every hour I was a awake, to now only having a few so far today. 😁 The bad news is that I have to get shots twice a day and it REALLY does make me super cranky. I feel a little better when my parents hold and keep me moving (bouncing in a chair doesn’t count!). It also doesn’t help that I’m on the verge of getting my top two front teeth. I hope this side effect gets better or it’s going to be a long few months!

Side note: I’ll most likely be in the hospital until mid-late next week since my new medication has to be approved before I can go home. So far, my insurance denied it and my doctor has to try to appeal on Monday. Fingers crossed! 😊

Here’s a picture of me passed out sleeping (while sitting up) after my active and exhausting afternoon. 😴

Happy almost 4th of July!

Love,
Hendrix

Hi everyone! I was so excited for my first Independence Day, especially the fireworks, my brain decided to have its own pre-show. After a long term EEG Mon-Tues, I was officially diagnosed with infantile spasms. These are seizures (different from my regular ones) that cause my entire brain to chaotically misfire (kind of like letting off several high voltage fireworks all at once) over and over again for several minutes.

After checking with several of my specialists, tonight I’ll be starting a specific treatment plan to hopefully make my infantile spasms go away over time. Unfortunately, the “temporary” side effects are not so fun (rapid weight gain (get ready for even more rollie-pollie goodness!), super low immunity, high irritability, etc.). Due to this, my original summer plans have been slightly altered and I’ll have to hibernate again for awhile.

For now, I’m focusing on adjusting to my new meds so I can go home and work on getting better. To pass the time though, I’ve been making friends with all the hospital staff, listening to music, playing with my toys, and catching up on some light reading. 😉 Thank you for all your love, thoughts, and prayers. Wishing everyone a happy and safe 4th of July! 🎆

Love Always,
Hendrix

Summer is officially here! 🌞🌊🌴 I absolutely loved my first time in the pool and decided to definitely be a water baby. All of my love handles and extra toes have really come in handy too. I can practically float all on own and already beat my daddy at the butterfly and breast stroke! 🏊 The playing field will be leveled though as I continue my summer exercise plan (PT & OT) and go down to only 10 toes.

I recently met with an Orthopedic hand specialist at CHOC. As of now, she recommended hand therapy (no surgery, hurray!) but did mention my growth plates didn’t show up on the x-rays. This will be an interesting topic of conversation with endocrinology next month.

Overall, I’m continuing to grow and make small gains. I did have one set back this week. Unfortunately, I had another seizure during my follow up diagnostic hearing test. I’m OK, but gave the audiologist quite a scare and got to meet several paramedics. I will have to take the hearing test again and am keeping my fingers crossed that the third time’s the charm!

My summer plans 😎 include spending time with my family, enjoying my first 4th of July, turning 1 year old, working on my tan, getting a bigger helmet, and booking one surgery date. My parents are trying to coordinate a few minor procedures to be done at the same time (removal of my 6th toes since they always get stuck, testicle relocation, and possible kidney reflux correction). I would prefer not to go under again, but if I have to, might as well make the most of it! 😉

I hope you all find time to relax and soak up some summer sun. 🌞 Thank you for all of your love, prayers, and support!

Love,
Hendrix

I finally made it onto growth chart! At my 9 month check up last week I was 16 pounds 12 ounces and 24 inches long. My progress is slow but steady and puts me in the 5th-10th percentile for weight and 30th for head circumference. I’m still below the range for height in my age group and setting that as a future goal.

Since my last post, I’ve resumed my specialists appointments, gotten a bigger helmet, started rolling from my back to my belly (but my arms get stuck), and officially have my two bottom front teeth. My biggest health news is that the muscular hole in my heart will most likely close on its own over time. Yay! However, my other larger hole is growing as I do and currently 15mm. This means I might require heart surgery sooner than originally thought. We will find out more though at my next cardiology appointment in July.

Thank you for cheering me on as I continue to grow and progress in my own time. I’m truly setting my own pace.

Love,
Hendrix