A year ago, almost to the day, I was walking into doctors’ offices pleading for answers, pleading for a solution. Benny was holding his breath 400+ times a day and was so unbelievably stiff. That was the moment we received his cerebral palsy diagnosis. It was crushing, but it also became a stepping stone. From that day forward, I made it my mission to fight for the best care, advocate for therapies and intensives, and search for every possible option for our boy.

This weeks follow-ups felt so different. They reminded us that while our medical miracle is still the same, everything we’re doing is working—thanks to your prayers, kindness, and generosity (because Medicaid doesn’t cover it all).

We are decreasing one of his seizure meds completely over the next 2 weeks. Please pray Benny stays seizure-free through this transition. I have such peace about this and believe it’s the right time. We are noticing some irritability but it’s to be expected. He is still remaining on one seizure med, and he also takes 7 others a day- some 4 times a day! 

We also stopped his middle-of-the-night medication. After a year of waking up nightly to give doses, Benny’s sleep has improved enough to try without it, and after 2 nights in everything is going good. That feels like such a gift!

Lord, please continue to bless our Benny with more miracles. Please guide us as we navigate therapies, care, and every opportunity placed before us.

Looking ahead:
• We are actively researching a place that fits Benny’s needs for stem cell treatment. Our hope is that over the next few years there will be more options—not only for Benny, but for the next family walking this road.
• Starting Monday, we begin 15 days of hyperbaric dives with our doctors in Pittsburg & Wichita—5 days a week until we head to Indiana October 5. I’m excited to see how he responds with these stacked on top of each other! 
• Next week, Benny will also do a mini intensive in Andover (Wed–Fri). Thankfully this intensive therapy itself is covered by insurance, and we are so excited to see how he responds. If it goes well, we hope to continue these more often.