8/8/2026

A little Benny update 🐝

It’s been a while since I’ve shared a general update on our sweet boy, and there have actually been quite a few changes lately!

Benny’s sleep has improved so much through the night! We’re still dealing with quite a bit of acid production overnight, so we do have mornings where he wakes up and vomits, but thankfully it isn’t happening every day anymore.

He is also gaining weight so well and is almost 23 pounds!! 🙌🏻 After everything we’ve navigated with feeding and his tummy, seeing that number continue to climb is something we absolutely do not take for granted.

We’re also continuing to see improvements in his overall regulation since Muse stem cells in June. Diaper changes used to be really difficult for him he would cry and become so uncomfortable and discontent. That still happens occasionally, but overall, it has gotten so much better. His body just seems more comfortable and regulated, and that alone has been such a blessing.

We’ve also had some BIG decisions to make regarding his vision and his hips.

After a lot of consideration, we have decided not to move forward with the vision surgerythat was recommended by his eye doctor at this time.

After working closely with his therapists, we believe a lot of what we’re seeing with his eyes may be connected to his dystonia and fluctuating muscle tone. There are times when his eyes seem “stuck,” but when his therapists work with him to regulate and relax that side of his body, his eye positioning can improve on its own. They’ve also given us things we can work on at home, so for now, we feel at peace continuing to work with him rather than pursuing surgery.

Now moving onto His hips, however, are a different story. After so much prayer, research, conversations, and second opinions, we have decided to move forward with tendon release surgery on Benny’s hips. His surgery is scheduled for December 22.

This has probably been one of the harder decisions for me.

Of course I want Benny to sit independently. I want him to bear weight, initiate steps, and gain every skill his little body is capable of gaining.  I’m also learning that his quality of life matters more than the quantity of skills he has.

If this surgery helps him be more comfortable in his body, protects his hips for the future, and gives him a better foundation to work from, then we feel like it’s the right decision. And who knows, maybe being more comfortable will open the door for new skills, too.  At the end of the day, I’ve had to literally hand this one over to God.

God knows Benny’s capabilities today. He knows what Benny will be capable of 5, 10, and 20 years from now. He sees a future that I can’t see yet. So instead of trying to control every outcome, I’m choosing to trust Him with it.

We will keep advocating. We’ll keep doing the therapies. We’ll keep celebrating every ounce gained, every peaceful diaper change, every good night’s sleep, every smile, every laugh, and every tiny victory that might not look tiny at all to us.

And we’ll keep trusting that God is writing Benny’s story far better than we ever could.

Thank you for continuing to pray for our boy and love him alongside us. Knowing there are so many people cheering him on through every season means more to our family than I could ever put into words.