Kyler’s Krewe

09/14/2025

08/08/2025

And that’s a wrap folks!! Had a successful visit at Shriners Children's Greenville! Got all our super hero gear updated and replaced, caught up with some folks we haven’t seen in a while, had a wonderful dinner with Ani Samargian, and had lots of fun hanging out with Papa and big brother Hunter!

Now it’s time to hit the road and make the trek back home. We should get there in no time though because we’ve got this fancy map to miss all the traffic and speed traps, courtesy of Hunter! He even drew in “lots of gas stations” so we didn’t get stuck on the side of the road!! 🙌🏻

🐝💙

08/07/2025

Red cast (picked by oldest brother via FaceTime) and some waterfall stroll pics with big brother Hunter and Papa!

08/06/2025

Out and HUNGRY!! 😋 always shouting orders and bossing me around…! 😮‍💨😅

But big brother came to save the day!

08/06/2025

Sorry for the delayed posting, but heres a little update:

Checked in, wheeled back, dressed for the show, and just got pulled back now! Back at Shriners Children's Greenville for round 3 of Mehta Casting. 🙏🏻

Followed up last week with urology on Kyler’s hydronephrosis and it was “marginally worse” this last check up, but not enough to be concerned with. For now, the plan is to stick with the normal routine and checkup in 6 months again.

Also, side note…. This dude turns TWO at the end of the month!! What!?! Time sure does fly..!

As always thank you all for your love, prayers, and support! We couldn’t do it without the Krewe! 💙🐝

07/01/2025

Can’t let today go by without sharing the love for our dude!!!

Literally the most stubborn child we have, but he is a fighter!!

Happy AMC awreness day to all the AMCers everywhere!!

06/29/2025

We wear blue tomorrow for this cutie!!
AMC awareness day is June 30th!!

Help us paint the world blue!!

06/21/2025

Life has been life! Kyler was on a road trip for his second casting of his spine

So here are days 14-20 😅

Help us turn the world ! 💙

06/13/2025

Days 12 and 13 💙🐝

Our dude has had casts for his knees and ankles a few times…currently casting of his spine…hours and hours of therapy. He has only had 2 surgeries related to his AMC at this time. We know of at least one more that will most likely be in the next year or two.

Ps look at whats missing! He gets a break for couple of days before he goes for round two of casting.

Help us turn the world ! 💙

06/12/2025

Day 10 and 11

Kyler’s Arthrogryposis is not genetic. He has amyoplasia
No/lack of muscle development.
This is what caused his joint contractures.

They don’t know what caused this.
We chose not to do an amniocentesis while pregnant but immediately after he was born did testing and it all came back negative.
It amazes me everyday how he is figuring out this crazy life!

06/10/2025

✨ Day 9 Fact: “Intellectual ability is typical in most individuals, but some people do have an intellectual disability.”

Kyler like many of his friends has a speech language delay, but he continues to show us just how smart he is. He finds ways to commmunicate his wants and needs. Though it can be frustrating at times he is teaching us patience and how to appreciate even the small victories (though they are big in our world).

Help us turn the world ! 💙

06/08/2025

✨ Day 8 Fact: “Joint contractures develop because the unborn baby fails to move properly. Movement is vital to proper joint development. Doctors miss prenatally diagnosing AMC 75% of the time.”

Duringng my pregancy with Kyler he moved way less than my other two boys. I even told the MFM nurse when she asked how everything was going…”I’m not feeling him move as much as I’m used to yet” she assured me that could be normal. I did question even at 20 weeks esp with my 3rd pregnancy. Little did we know there was a reasonon I wasn’t feeling him as much.

👕 Want this year’s AMC Awareness Day shirt? Grab yours here: 👉 https://shop.amcsupport.
Help us turn the world ! 💙