Jingle Bells

There is something incredibly sweet about watching a bunch of four year olds sing Christmas songs at a school program. They made me laugh and cry at the same time.

Side effects

Sometimes the side effects of the medication are worse than the disease. Sometimes medication can even make seizures worse. Or can cause a different kind of seizure. Side effects include: blurry vision, fatigue, sleeplessness, upset stomach, slurred speech, irritability, aplastic anemia, memory loss, learning disabilities. Allergic reactions include: skin rashes, low blood cell count, liver damage.

out of options

Epilepsy medication is used to treat the symptoms of epilepsy, but it's not a cure for the disease. When a person starts a new epilepsy drug, it often takes time to find the right dose to provide optimal seizure control with minimum side effects. Since 1990, a large number of epilepsy medication has been approved by the FDA, increasing the treatment options for patients.

How well an epilepsy medication works may be affected by other medications the patient is taking. With Lennox-Gastaut there is no single medication that will control seizures. Also with Lennox-Gastaut, new medications initially improve seizures but within a few months patients develop a tolerance to the drug to the point of ineffectiveness.
Damonito is currently trying a new drug that has just been approved by the FDA. Just in the nick of time. He hasn't been doing well and we've been hoping for a new development.

now you see it, now you don't

When my dad had his stroke there was a guy who shared a room with him in the rehab hospital we called Houdini. Unfortunately I don't remember his real name, but my sister and I gave him the name because the minute the nurse would leave the room he'd take off his clothes. Which was really a feat since he was strapped down.


Damonito is never strapped down so it makes taking his own clothes off much easier. And he does. Immediately. Although he manages to keep his clothes on at school, mostly, he rarely has clothes on at home. He'd take his diaper off if we didn't tape it. Even then sometimes he gets it off. Which never ends well.
I don't know if there is some connection between his epilepsy and him taking off his clothes. Maybe his skin is overly sensitive and it just feels better without them. Maybe he just likes to be naked.

Mom knows

Damonito's mom, Nicole, is amazing. She is the backbone for the rest of us. I'd call her The Rock but the nickname is already taken. She has crystal clarity even at the worst of times. In those times I feel pretty worthless, although I am good at yelling for help. I take my cues from Nicole and I've only seen her actually break down twice throughout this whole ordeal. Really lose it.
She knows everything about Damonito. She knows exact amounts of every medication Damonito has ever taken. It's been a lot. She knows his weight in kilos. She knows how he'll respond in any given situation. She knows how many hairs are on his head. She can tell when he's going to have a grand mal. She knows everything. It's amazing.
I've never once heard Nicole say, "Why me? Why us? Why him?" I've never heard her say that she can't do this anymore. She's never blamed anyone, she's never felt sorry for herself. She gets up everyday and she is The Rock for the rest of us (now I can't say what goes on in her head in the middle of the night but that is her own and she's entitled). All I know is I feel like she's taking the bullet for the rest of us. And I am in awe of her.

Robust Frame

One year for Halloween Damonito was The Incredible Hulk. It was the perfect costume but not so much a costume because he is, after all, incredible. And he is a hulk. Not so much in size as in strength. The kid has guns. From across the room he seems a little helpless. Get closer and he holds his hands up to take your hands and the next thing you know he's pulling you down to the floor. You think because he's only four that he can't be that strong. He is.

the ability to spring back

The resiliency of children is amazing. Damonito has managed to find his way back from places that there was no return. Sometimes no worse for wear. He's a fighter. We're lucky. We are amazingly lucky.