It's been almost two years to the day that we entered Vanderbilt Children's Hospital for our weeklong stay, when, let's be honest, this nightmare began. Leo turned 6 months old while we were in the hospital. Yesterday, 2.5-year-old Leo had a scheduled EEG to see if there are any firings in his brain that still suggest seizure potential since last August's frontal lobectomy.

It isn't a nightmare anymore; it's our reality. We're more equipped than ever to make decisions for Leo, and Leo's knocking everyone's socks off with his progress.

We limited his sleep the night before so he'd hopefully nap during the EEG; since his pre-op seizures occurred when he changed from one sleep cycle to the next, sleeping during the EEG was vital. This kid, he went to bed late, was woken up at 5 the next morning, and was a total dream.

Silly. Smiley. Singing.

He lay still while the tech applied the electrodes to his scalp, endured a 13-spell series of flashing lights to try to cause a seizure, and held my hand as he nearly instantly fell asleep.

Afterward, we did our best to shampoo the thick applicator gel out of his hair in the exam room sink. Then we went into another room to wait for the pediatric epilepsy medical director. Ever the toddler, Leo waited at full volume.

"FISH," he demanded.

We started singing, "Slippery fish, slippery fish, swim—"

"SHH," said Leo. "BUS."

The doctor confirmed what we'd guessed: The EEG showed no seizures or electrical activity that suggested those firings. This means it's time to begin weaning his meds. It's slightly uncomfortable to do this. After all, for years now, he's been on heavy doses of two medications he gets twice a day each and one he gets at night. All of these meds have to be administered at the same time, exactly 12 hours apart, and the one at night requires dissolving a pill in 25ml of water then giving Leo 10ml of that slurry.

(For that medication, there have been no studies on its performance in children. So doctors have basically made up the dosage.)

With rare disease diagnoses, there's so little the medical team can tell you about the prognosis. Will my child walk, speak, feed themself, hold a job, live on their own? The future can't be predicted, and often it can't even be guessed.

We know from the fellow PMG families we speak with in our online support communities that there's a range of experiences with this diagnosis. Some kids can't hold up their heads, are fed by G-tube, experience behavioral side effects from medication, live typical lives, have constant seizures, never have seizures ... So, yeah, it's incredibly frustrating to try to care for a child when you don't know what exactly their needs will be.

What can be done now to set them up for whatever success looks like for them down the road?

We leaned hard into early intervention therapies, and I believe it has made all the difference in Leo's case. He quickly started physical, occupational, and developmental therapies after his diagnosis, and we've since added speech therapy. We're forever grateful for the Tennessee Early Intervention System, which covers the balance of all these therapies until he turns 3, then possibly until age 5.

And now? Bear with me as this proud mama brags on her little guy.

+ He walks with and without his SMO (supramalleolar orthoses) braces.
+ He can go from sitting to standing without needing to pull himself up.
+ He can briefly stand on one leg.
+ He can draw vertical and horizontal lines, and he's working on circles — all necessary for handwriting.
+ He understands how to pretend with play food.
+ He can do a chunky puzzle like this.
+ He feeds himself (about as well as any toddler) and drinks from an open cup.
+ He can follow simple directions.
+ He's learning to help us get him dressed.
+ He helps brush his teeth.
+ He understands routines and will put his cup or water bottle in the sink.

Aside from walking, his most significant development has been in speech. He picks up signing really quickly, so there are many words we'll sign with ASL (yes, no, want, more, thank you, please, help, car, bike, etc.). He also talks up a storm. It's mostly labeling — pointing to a dog, saying "doggie," then barking. But he's also starting to form short sentences — "Bye-bye, Pop," "Thank you, Mama," "Get up," "Sit down," etc.

He's just so much fun. I really delight in Leo because our parenting experience with him was so hard for so long. Lonely, too, which is why medical parents seek refuge in these online communities. For every post from a parent asking about a specific medication's side effects, doctor referrals, equipment, and IEP advice, there's also a post from a caregiver needing emotional encouragement, someone wracked with anxiety and worry who clearly is overwhelmed with stress. (The phrase "SEVERE PTSD," in all-caps, makes frequent appearances.)

We absolutely felt on edge entering Vanderbilt yesterday, all those familiar feelings bubbling up, but then a grinning Leo pointed up at the waiting room's TV and declared, for all to hear: "BLUEY!"