As the mid-morning sun burst into the living room window, the sunlight accented his golden hair and warmed his porcelain skin on this blustery morning. I hugged him quietly this morning, reflecting upon, how just days ago, he could barely stand and he could hardly focus visually.
My gentle hugs transitioned to a cradling embrace as my sweet boy drowsily slipped into a morning nap. This nap was effortless, unlike the normal naps where we’d struggle and tears would often precede shut eye.
But if there’s anything I’ve learned in with in the past two years when it comes to medical scenarios, “normalcy” seems to be a far-fetched concept.
In June 2012, Josh began having seizure episodes late at night, after we’d spent a day at a water park. It was hot, he’d been fed formula for one of the first times and we were about to embark on a whole host of unknowns.
My baby was just 4 months old.
He was still in his bright blue rash guard when we arrived at the ER. I shoved his pajamas and clean diapers into my bag. The towel draped over his pantless legs doubled as a blanket while he slept.
As soon as they transitioned us from a gurney in the hall to an actual room, his eyes enlarged, his limbs tensed and energy pulsed through his tiny body again. This time, they positioned a small oxygen mask over his face. My cries were audible and my fear was heightened; no one was talking to me, everyone was focused on him.
His weeklong stay at the hospital revealed that Joshua has a complicated and tricky seizure disorder, but one that could be controlled by medicine. The kicker? Anti-seizure medicine is typically accompanied by a long list of side effects. Side effects, that we would learn, would beleaguer an already-trivial time.
Josh would have almost a dozen more seizures while in the hospital. the first medicine, Keppra, they found, wasn’t enough to dispel the clusters of seizures. A second anti-seizure medication, Dilantin, was introduced. About three days into our ordeal, this combination of drugs stabilized my baby.
After a myriad of tests ruled out birth defects, abnormalities or genetic disorders, the neurologist found this cocktail of meds that would “improve” my baby’s quality of life.
While in the hospital, Joshua still didn’t have the capability or strength to roll over. Except for when they put in his IV, he rarely cried. He was the most agreeable baby, at least that’s what I thought.
Over the past year and a half, we’ve had to learn the ropes of Josh’s new needs and nuances. We learned that his low tone correlated with his neurological condition, and that Early Intervention has been a saving grace as we navigate these turbulent toddler roads.
Since the summer, Josh has been receiving Developmental Therapy, Physical Therapy, Speech Therapy and Occupational Therapy. After one of his EEGs revealed scarring on his brain, it was determined that Josh will have a harder time learning how to communicate. And thus, we increased his therapy to get him “caught up.”
What I’m learning, though, is that “getting caught up” is interchangeable with keeping our ground…because in this uncertain terrain, anything is possible.
Josh’s epilepsy, we’re told, is a tricky one that can occur in cluster. Fortunately, though, as we’ve seen, his seizures can be controlled with drugs—the right drugs.
Last week, after having blood tests done at a private lab, and then again at the hospital, one of Josh’s medicine levels was almost 4 times the amount they were supposed to be. Toxic levels.
Josh’s neurologist made the decision to take my sweet boy off of Dilantin and upped the dosage of his Keppra. The Dilantin and Keppra cocktail is what his body has known, and so, I questioned his recommendation.
“If we know Dilantin works, then why are we taking him off of it?
“It’ s a different time, mom” he said in a very matter of fact manner. As if, I haven’t been at his bedside every waking moment for the past two years.
This rocking the boat thing? It never works for us.