Extraordinary Evan

05/23/2026

Happy 13th birthday to our ! We are celebrating you big today while on vacation. What a gift from God Evan is! We are so grateful. Now we officially have two teenagers in our house! 😱😂 🎂🎉🥳

05/22/2026

05/12/2026

had a good day at the zoo! Alexandria Zoological Park

05/05/2026

Not the best picture. Not the best morning.🫠

I had to use my rudimentary nursing skills to fix bleeding around ’s g-tube this morning.

And then Evan had a seizure at therapy. 😞

Did I mention Stewart is out of town? 😩

Send prayers, Diet Coke, coffee, and chocolate. Mostly prayers. Those others are not good coping skills. 🤣🤣🤣

04/25/2026

The internet describes "Nap trapped" as “the phenomenon where a parent or caregiver is unable to move because a baby or toddler is sleeping on them, often forcing them to remain in one spot for an extended period. This common occurrence can feel restrictive, limiting productivity and mobility.”

Not many mamas of 12 year olds get nap trapped.

One of the many blessings of is that I still do.

Grateful. 💙

04/16/2026

“They’re still in there, aren’t they?”

had the worst seizure he has had in months tonight. I heard his helmet hit the floor all the way from the kitchen. It was a tonic clonic - a grand mal. I sat by him and watched my phone for the time. If we hit 5 minutes, I have to rescue him. He woke up about 30 seconds before then. I sighed in relief.

Evan has been doing GREAT. We have had seizure free days even. But tonight reminded me that the seizures are still there. I asked Evan that question as he sleepily closed his eyes. Yes, they are still there. So we remain on guard, ever watchful, ever prayerful. 🙏🏻

04/01/2026

We love RPDHC! 💜