04/23/2026
January & February 2026
We’re getting closer to present day!! 🤗
January brought a new year… and with that, another round of appointments.
In the first few photos, you’ll see Braxley going through some of her routine testing. Because of her smooth muscle disorder (MSMDS), it affects all of the blood vessels in her body. Most people don’t realize it, but there’s smooth muscle in all of our blood vessels—it helps regulate blood pressure and blood flow by controlling how wide or narrow those vessels are.
One of the most serious aspects of MSMDS is how it impacts this system.
There is also smooth muscle in the aorta, which helps maintain its structure and function. In Braxley’s case, her aorta is dilating—meaning it’s continuing to grow larger. This is something we watch very closely, as it can become dangerous if it grows to the point of dissection, which is life-threatening.
Right now, her aorta is already about three times larger than it should be. She has echocardiograms every six months to monitor it closely.
On the opposite end of the spectrum, she also has severe stenosis (narrowing) in both of her internal carotid arteries. So while one area is enlarging, another is closing. This narrowing can limit blood flow to the brain, increasing her risk of stroke.
In the second photo, she’s having a transcranial doppler test done. This measures how fast blood is moving through the arteries in her brain. It’s another tool we use every six months to monitor if things are changing.
MSMDS is complex. It doesn’t follow rules. And it forces us to live in this constant balance of watching, waiting, and praying.
But January wasn’t just appointments.
It also brought joy. A new kitchen set from her Great Aunt Cathy, lots of imagination, playing with her babies, figuring out her own outfits, and sweet (and sometimes not-so-sweet) moments with her little brother.
February brought our first hospitalization in over a year—but thankfully, it was a short stay.
It also brought a princess party, where she got to be her favorite—Elsa. A beautiful book written by Jenny Brown 💜. And even a rare warm February day that we soaked up outside.
This is the part that’s hard to explain.
How life can feel so heavy and so normal all at the same time.
How behind the smiles, dress-up, and everyday moments… there’s something very serious always running in the background.
That’s why we share.
To bring awareness.
To help people understand.
To remind others that not everything you see on the outside tells the full story.
And most importantly—because education leads to research, and research leads to hope.
For Braxley.
And for every family walking this road.
💜🩵
