Liss Not Less

WHAT IS HAPPENING?!

What I did on Sunday with Part II 😮‍💨

The Women’s Initiative Network (WIN) is a volunteer organization dedicated to raising awareness and funds for Kennedy Krieger Institute. So when they reached out and asked if they could share Callie and Nola’s story to help highlight the importance of accessibility and raise funds for an accessible playground, the answer felt pretty obvious. 💜

Here’s a small snippet from the video they created for their Hope In Bloom event earlier this month. The funds raised support a new, fully accessible playground for Kennedy Krieger Institute’s Fairmount Rehabilitation Programs — a joyful, inclusive space where children can play, learn, explore, and build confidence alongside their peers.

Because every child deserves a playground built with them in mind.

If you’re interested in supporting the project, you can find the donation link in our bio!


playground

No AC day 3… which feels fitting considering Callie woke up looking like her own version of the Heat Miser 🔥

Unfortunately, the resemblance isn’t just because of the wild morning hair…

Callie’s lissencephaly actually causes poor body temperature regulation, meaning she consistently runs warmer than average. Temperature regulation issues in lissencephaly are often tied to abnormalities involving the hypothalamus, the body’s built-in thermostat. Most individuals with lissencephaly statistically struggle more with hypothermia, but Callie continues to be an atypical presentation in more ways than one.

So naturally, during the hottest stretch of the year so far… our HVAC decided to fully clock out 🫠

For now, we’ve got a portable AC unit running in one bedroom while we wait for the new system to arrive. Which means Callie and dad are bunking up in the luxurious temperature-controlled suite while yours truly is sleeping in a toddler-sized big girl bed fighting for my life.

Thoughts, prayers & cooler weather 👌🏼