Maura Fern: A Portrait of Infant Epilepsy

Yesterday was conceivably Maura Fern's worst day since leaving Children's Hospital of Philadelphia where It wasn't uncommon for her to have upwards of seven seizures per day. Yesterday she experienced five episodes (up from the two the day before that).

It's hard to believe her first episode occurred within the first 40-hours of life, and here she is almost 4-months-old. As you can imagine, the appearance of her seizures have changed with her age.

The seizures typically begin with a piercing cry. it is unmistakable, like nothing you have ever heard (and you can hear it across the house). Right then hear back arches upward and eyes roll to the back-left. They appear keenly focused on some distant object, and will not track faces or voices.

Maura's muscle tenses. Her arms fall to the side and fists start pumping. Every last muscle in her face starts to twitch… All of which is coordinated in a rapid, pulsing rhythm of contract, release, contract, release.

Even her breathing is gripped by the seizures as her lungs struggle against shallow, rhythmic breaths. When she was much younger, she would enter a state of apnea, sometimes requiring assisted breathing from the CHOP nurses. Now, she becomes quite pale… and you wait for her to regain control.

120 seconds of pure helplessness. There is nothing we, the parents, can do outside of just hold her lovingly, call her name waiting for some response, and count every tick of that clock, and wait for the typically, two-minute episode to end.

There is no rhyme or reason to the onset, though Caroline and I have recently associated a trigger upon waking. Right now that is purely speculation, as we are grasping at straws for any real answers.

Just imagine looking at a peacefully sleeping baby, and worrying about the next time she wakes. You might have some idea… Though, to be honest we aren't fearful… just anxious knowing it can happen at any time (and very grateful when it doesn't).

We are hopeful for a reprieve from Maura's epilepsy, and can have a least another month-plus seizure free; though we are really praying she grows out of this condition.

"What Sarah Said": a live action web comic (episode 2, Hurricane Irene edition)

"Sarah the roving weatherduck reporting from the West Jersey evacuation center where one person lined up to take advantage of services. Miss Maura, what did you think of... Oh wait. Did you just poop your pantaloons?"



"Sarah the roving weatherduck reporting the after effects of the storm. Here in West Jersey a plight of "downed" acorns litter the streets, and at least two squirrels seem to have fallen from the trees. And in other news..."



Stepping away from her duties as an on-the-scene action reporter, Sarah rubs elbows with the locals to toast smores during the West Jersey power outage. Marshmallows are sweet, good friends you can rely upon are even sweeter.



"Sarah here, joining with the benevolant, humanitarian efforts of the West Jersey communities to thoroughly clean up after the devastating effects of Irene... though, it looks like I brought more devastation upon myself. Oh dear God, I am really never, never drinking again."



"Local schools & businesses are closing due to flood conditions caused by storm water runoff. For those who braved going into work, it sucks to be you... unless you have amphibious inclinations like m'self. I'm rather enjoying the dip."

"What Sarah Said": a live action web comic (episode 1, Hurricane Irene edition))

Went with my neighbor Carl to pickup batteries & water from Lowes. Instead, I'm coming home with this present for Maura & Car. Perfect item to weather the storm together.



"Sarah the roving weather duck reporting from Bordentown, NJ. The weather appears... uh, wet... with severe flooding conditions as seen here on this sidewalk. Stay tuned, more news to follow..."



"Sarah the roving weatherduck here. Torrential downpour is 2nd only to heavy, hurricane-like winds blowing at umpteen-gazillion miles per hour... Just look at... how hard... it is.... to... stand..."



"Sarah the weatherduck reporting. Darkness continues to spread throughout the lands as the effects of Hurricane Irene continues to blot out the sun. Oh wait... Nevermind. That's just night. Next report at the 'quack' of dawn."



"BREAKING NEWS: earlier this evening a tornado was spotted east of Trenton. The only 'twister' here is the room is spinning out of control. Oh dear God, I promise never to drink again."



"This is a test of the emergency quackcasting service. Had this been a real emergency, you probably wouldn't be on FaceBook jamming reload to check for new notifications. No, I know you... Of course you would! Turn off the computer & head to bed!!!"

Calm Before the Storm

A light blanket of precipitation began to pepper the street outside, as the television continued to drone "news" of Hurricane Irene. This reporting mainly consisted of the same three-minute weather forecast interspersed with "man on the street" interviews. The media-frenzied descended upon supermarkets and hardware stores to ravage the shelves of fresh water and batteries.



I reached my saturation point, and needed to get outside to forestall any feeling of ennui that comes with being locked indoors on a rainy day. I turned off the television. Grabbed my running sneakers. And began to head for the door. My son Patrick asked "Daddy, I go running with you?" as he climbed up into the running stroller. Together, we took to the streets to observe the calm before the storm.



Our first destination was Bordentown Beach, where we could look out over the Delaware River. Ducks swam playful circles around one another, quite unaware of the impending storm. Small minnows darted in the shallows beneath the boating dock. The currents converged at the now-revealed sandbar, and reversed tides upstream towards the Trenton-Hamilton Marsh.



The difference between high and low tide is approximately nine feet on any given cycle. Given the perfect mixtures of storm runoff, full moon, and high tide, the forecasters expect the Delaware to swell over 25 feet. One-by-one, the more cautious members of the yacht club began to draw boats onto dry ground in anticipation of the surge. Fortunately, residential Bordentown is strategically located on a bluff above the marsh and flood plain.



We turned to head back into town, with me slowly trudging behind the jogging stroller uphill. All things considered, Bordentown was relatively quiet. A jogger here. A dog walker over there. Maybe the occasional buzz of power tools (which might suggest some final fortifications). A jog down Farnsworth Ave proved much the same business as usual. Even the liquor store/pharmacy didn't seem swarmed with those facing last minute preparations. All seemed well here in "West" Jersey. Rounding that last corner, I did stumble upon one business who took the storm a little more seriously.



It was a nice a quiet morning. It remains to be see what this evening might bring.