First encountered Wilco as an alternate stage act during the mid-90's H.O.R.D.E. tour. I still have that "A.M." era demo/single somewhere in my tape collection. Didn't really become a fan until the late 90's when my wife started playing "Yankee Hotel Foxtrot" and "Summerteeth" in heavy rotation. Then I fell in love.
Recently heard a friend sing an acoustic cover of "Forget the Flowers" from the Wilco's "Being There" album. Decided to revisit their earlier material and was really captured by this particular song. The song has catchy lyrics over a simple chord progression with some banjo and country guitar licks in the background.
I feel comfortable with chords & strum patterns and would eventually like to learn the electric guitar parts. Here are a two notable acoustic cover versions I found on You Tube (none of which are my friend's).
Randomized Header
Saturday, September 24, 2011
Wednesday, September 21, 2011
"What Sarah Said": a lo-fi, live action web comic (episode 5, Duck Season)
This afternoon Comic Life suggested I upgrade to the most recent version. After running the install, I was prompted to upgrade for only $9 on what would be a $30 new software purchase. What a great deal! Comic Life 2.0 offers the same easy publication with twice the templates and formatting options. I felt inspired to immediately bring the next issue of "What Sarah Says" to publication a few days early. Enjoy!
Tuesday, September 20, 2011
My Toddler is the *rain Man
Earlier this summer the family took a day trip to the Jersey shore. Having spent a major portion of that day in the sun and sand, we readied to head back home. My three-year-old son refused to put on his sandals, even after taking a few sizzling steps onto the sun-soaked blacktop.
"What are you, a BEACH BUM," I cracked, mildly amused that he would rather endure the treacheries of walking barefoot.
"No dad, you a beach bum!" he asserted.
We exchanged words a few times, and then I allowed him to get the final word. Needless to say, my son walked barefoot all the way back to the car.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcdW9GYa8C-J010yCyqN0JxjF-rDltKTii2oopTQWFf2j8xVz60HrXpaYwrDDc-KJfzqXnY5FqQqsL7T702F-aK4CjirfLUh9u37BKloC0cuwPuj1U_6_HbBIIe8lvil1d5HWdOgtceI0/s400/Beach+Man.jpg)
A few weeks later, the family took a camping trip up to Vermont. Having parked the car, my son kicked off his sandals and proceeded to run about the campsite barefoot. Yes. Sixty degrees, raining, with that brisk New England late summer chill. And there he was, digging his toes into a carpet of pine needles.
"What are you, a MOUNTAIN MAN," I cracked. This time I new the rules of the game meant he now had to volley back a remark.
"No dad, you a mountain man."
"No, you're the mountain man!" I shot back, attempting to best this toddler.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjq68ciMsbW6JGcgzdNYlcSwtAce80tj0Wufb4UDVyVJgut1V4qgufn3b3x3w2en3YLyMPgb5CdjOq5QkZzFji8gwvvupYZVJQg9IEZLJ9a2w9yzDPTh0aIUpFdn19OFJnA-3RKtYXZ8lg/s400/Mountain+Man)
This time, he looked at me in earnest and replied, "No dad, I'm a *rain man."
I blinked. A rain man? My wife and I exchanged looks of befuddlement. What did my son know about autism and Dustin Hoffman? Yeah, my son's a keen observer, but this definitely didn't make sense.
"A rain man?" I asked.
"Yes dad, a *rainmain. Choo choo."
Oh yes, of course. A TRAIN man. Of the Thomas the Tank Engine variety of train man at that. "Why yes, you are a train man, aren't you." And to that, he nodded in agreement.
Toddler is a language of all it's own; apparently I am not all that fluent.
"What are you, a BEACH BUM," I cracked, mildly amused that he would rather endure the treacheries of walking barefoot.
"No dad, you a beach bum!" he asserted.
We exchanged words a few times, and then I allowed him to get the final word. Needless to say, my son walked barefoot all the way back to the car.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcdW9GYa8C-J010yCyqN0JxjF-rDltKTii2oopTQWFf2j8xVz60HrXpaYwrDDc-KJfzqXnY5FqQqsL7T702F-aK4CjirfLUh9u37BKloC0cuwPuj1U_6_HbBIIe8lvil1d5HWdOgtceI0/s400/Beach+Man.jpg)
A few weeks later, the family took a camping trip up to Vermont. Having parked the car, my son kicked off his sandals and proceeded to run about the campsite barefoot. Yes. Sixty degrees, raining, with that brisk New England late summer chill. And there he was, digging his toes into a carpet of pine needles.
"What are you, a MOUNTAIN MAN," I cracked. This time I new the rules of the game meant he now had to volley back a remark.
"No dad, you a mountain man."
"No, you're the mountain man!" I shot back, attempting to best this toddler.
This time, he looked at me in earnest and replied, "No dad, I'm a *rain man."
I blinked. A rain man? My wife and I exchanged looks of befuddlement. What did my son know about autism and Dustin Hoffman? Yeah, my son's a keen observer, but this definitely didn't make sense.
"A rain man?" I asked.
"Yes dad, a *rainmain. Choo choo."
Oh yes, of course. A TRAIN man. Of the Thomas the Tank Engine variety of train man at that. "Why yes, you are a train man, aren't you." And to that, he nodded in agreement.
Toddler is a language of all it's own; apparently I am not all that fluent.
Friday, September 16, 2011
Tuesday, September 13, 2011
McGuire-Dix-Lakehurst "Beast of the East" Mud Run, 2011
When my neighbor Carl asked if I would be interested in creating a five-person team for the Joint Base McGuire-Dix-Lakehurst "Beast of the East" September 10th, 2011 mud run… my only answer was, "Hell yeah." A few keystrokes later and our testosterone-filled impulses committed us to running this hellish 10k.
I've run for endurance. Run for speed. Never quite had the opportunity to participate in an adventure race (except for the Morris Mauler 5k where I had to crawl up an icy hill). This would be my first opportunity… and I certainly didn't want to pass up the possibility of forming a team.
Forget training. We had no real chance in completing the race with any respectable finish time. Therefore we set upon the strategy of style above substance. We needed flash, not fast. You might compare this against starting up your first garage band. Picking a good band name and style of performance art is sometimes more important than the song choice, or being able to play instruments for that matter.
We set to task with heart and determination. Skimming through the team registration online, we knew we were up for a good battle. Cereal Killers. The Asstastics. FudMucker. It was then I had a moment of brilliance. Run For Morass.
Carl gave me a squinty-eyed look, and pointed out that pulling together a team of five men under the banner of Run for Morass might give the wrong impression Forget that we are all straight, happily married men… a name like that might draw scowls from the Don't Ask, Don't Tell military crowd.
So, we set our sights for a team name that exuded uber-masculinity. In terms of 80's action flicks, it came down to two simple choices: Arnold Schwarzenegger or Sylvester Stallone. This was a no brainer. We immediately agreed upon the team name Rambo, First Mud.
Fast forward our lackadaisical late-summer, training routine to the week before the event. Hurricane Irene swept through New Jersey in a downpour, flooding wetlands, streams, and rivers. Another round of cloudburst activity came through on a separate storm front. Considering the ground was already saturated from Irene, the runoff from the second wave caused even worse flooding conditions.
To be perfectly honest, I wasn't sure whether or not the race organizers would need to cancel the event due to extreme flooding. This suspicion was stoked by a lack of information and updated regarding race-day logistics. With very little time until race-day, an email came blazing through my inbox with "Working on last minute stuff" frantically types into the salutation. This was the final confirmation: the race was on.
The day prior, Carl and I drove down to the base to pickup our registration bibs and runner's booty. In casually speaking with some of the event staff, we learned that some of the obstacles still needed to be drained. Yes, drained. It was then I realized that the mud run might better described as a marsh run. Another volunteer imparted that we had better bring bug repellant, as the combination of high humidity and standing water was fertile grounds for breeding mosquitoes. With that last bit of advice, we departed.
Route 68 is a two-lane highway that narrows down to a single lane. It exists for one reason only: to bring visitors off the New Jersey Turnpike and onto Joint Base McGuire-Dix-Lakehurst. And we were bumper to bumper with a few hundred other cars waiting to pass security check to enter the base's main gate.
An officer on the side of the road spotted the driver's Department of Defense identification and suggested we bypass the wait by driving to a military-only entrance. Following command, we drove off (only half-remembering the directions) in search of this alternate entrance. Truth be told, someone didn't have their stories straight, as we were redirected back to the main gate upon arrival. Fortunately, everything onward operated like a well oiled piece of machinery.
The race was staggered into multiple heats-- at least eleven if rumors were correct. We anticipated many of the military-grade obstacles would be relatively free from grunge since we were schedule for the third heat. Our cohort was a mixed bag: costumed amateurs (bonus points goes out to the BraveHeart group who ran in kilts), military personnel, a few crazed adventure seekers, peppered with some die hard runners.
This wasn't a traditional race by any means as evidenced by the lack of passers by or even a passing lane. Participants patiently waited his or her turn to take a whack at the obstacles. A generous amount of time between heats proved an effective means of crowd control; I did not experience bottle necking at any point in the course.
The course was naturally flooded. I was soaked within the first half-mile. Running the next six miles with waterlogged footgear over a sandy surface was one of the more challenging aspects of the race. The three mile mark felt like running a full 10k. Running through mud puddles felt reminiscent of puddle stomping as a kid, and wading through the swamp was mildly amusing. There's nothing like feeling unidentified objects brush past your legs beneath the murky depths.
Scores of plastic "Jersey Dividers" were spread throughout the corse. A few showoffs with bravado would either hurdle or leapfrog over, whereas most others approached the highway medians one leg at a time. Climbing up sheer embankments of festival-grade mud required knuckle deep finger holds to gain better traction. Each aspect of the race layered another coating of filth: sweat, festival-grade mud, swamp water, duck weed, and a dusty film of sand.
Rounding that last bend, I spied something better than the finish line: fire hydrant's rigged to spray into the running lane. Not even caring for my finish time, my team and I soaked in that the direct blast, watching as layer after layer of grime melted away leaving me drenched and mud-stained. After crossing the finish line, I removed my sneakers to reveal a bed of sand having accumulated in the toe box. Another stratum of sediment came to rest inside my socks.
My old running sneakers found their way inside a dumpster and I began the walk back to the car barefoot, with a satisfied look on my face. The Beast of the East was unlike anything I had ever run before.
Monday, September 12, 2011
Maura's Story: Diagnosis & Treatment of Infant Epilepsy in Retrospect
It started to become complicated about half-way through my wife's pregnancy. She was diagnosed with placenta previa, a condition where the placenta comes to implant itself right over the cervix. A very serious condition considering the placenta is a massive organ of blood an nutrition, obstructing the baby from being naturally delivered. God forbid the placenta were to pull away from the lining of the uterus, it would quickly threaten the lives of both mother and daughter.
We hoped the situation would resolve by itself. Best case scenario would be for the placenta to move away from the cervix as the uterus grew in size. Although there was mention of scheduling a C-section, my wife's OB was agreeable to postpone any decision making until Caroline was much closer to the expected due date. She never even came close. Nearly four weeks before the expected delivery, my wife experienced heavy bleeding and had to be rushed to the Virtua Hospital in Mount Holly.
After three days of close observation, the OB decided it was too risky to allow for her to go home. It was decided to schedule the C-section later that afternoon. This decision was necessitated by the urgency of bleeding with placenta previa. Although we were disappointed the option deliver naturally, we knew it was in the best interest of mother and daughter. We only wanted a healthy child. We only wanted what was best for him or her.
![](http://farm6.static.flickr.com/5184/5681788173_91bdc96f61_m.jpg)
The operation was marked by some 'excitement' (as the OB later came to call the event). The baby was both breech, wrapped in the umbilical chord, and didn't naturally take the first breath. The medical professionals were very cool under pressure, and we only came to learn about the riskiness of the delivery well after the fact. Maura Fern was born May 2nd, six pounds five ounces. Because she was four weeks premature, the doctors took Maura into the NICU for observation while mom recovered from her operation.
That was the longest three hours of my life. Well, at least up through the life I had lived. We anticipated the worst. Concerned that the complications with Maura's birth had cause some sort of serious condition. Our fears were belied when Maura came back to us, healthy, content. For all the hardship my wife had endured with the complications of her pregnancy, here was the perfect baby. The next day gave way to a never-ending cycle of visitations from family and medical professionals.
With the exception of jaundice, it appeared we would be able to finally take Maura home. We made the necessary preparations and following every prescribed checklist. By the end of the day, she only needed to pass a car-seat test. This baby exam mainly consisted of having Maura buckled into a car seat, under close observation, for a 90-minute period. I was so certain of ourselves, that I had started packing the car with every last possession.
![](http://farm6.static.flickr.com/5293/5685744032_f3ea8a5d26_m.jpg)
Just as I was organizing the last round of baggage, the nurse came back with disappointing news: Maura had a blue-spell towards the end of the study, and would need to stay in the NICU for observation.Sleep deprived. Emotional. Worn down from the preceding days. We were both absolutely crushed. I slowly trudged back down to the car and started regathering all the bags for at least another night's stay. Another night. We had already spent the last five nights at the hospital, and now we had to contemplate the possibility of a much longer stay.
My wife and I turned our thoughts on the "What-To-Do" with our 2-year-old son, Patrick Finn, who was staying with my parents. It seemed unfair to have him stay much longer. Caroline and I made the tough decision to split up. We had two children, both who dearly needed us. Again our options were forced. Patrick couldn't come to stay in the hospital room just as Caroline couldn't leave Maura. With a kiss, I left my wife and infant to care for my son.
![](http://farm3.static.flickr.com/2683/5752402726_ee239d4b26_m.jpg)
Later that night my wife called with an update: since my departure, Maura had experienced several more blue spells. The nurses started to suspected these apnea-life events were the manifestation of seizures. My daughter was immediately placed on EEG monitoring and administered the drug Phenobarbital. At the bare minimum, the NICU would need several more days to monitor the situation and adjust medication if necessary. Things had gone from questionable to worse. I felt so powerless as my wife and daughter were so many miles away… and there was nothing I could do to help.
Little did I know this was only the beginning. Maura suffered seven seizures on the following day. It took my every last reserve of energy and emotional strength to teach the final session in my graduate level course. The day thereafter my parents took Patrick for the day while I visited Caroline and Maura at the hospital. The NICU decided the situation called for more specialized services which could not be provided by Virtua. We would need to send her to either St. Christopher's, Dupont, or Children's Hospital of Philadelphia. There was no question, as CHOP's reputation was unsurpassed in our minds.
![](http://farm6.static.flickr.com/5064/5689068864_dba1089764_m.jpg)
For the first time I outwardly cried. Such a small child. Vulnerable. So many miles apart from her parents. Separated. I cringed to see her securely placed in the incubation box as the emergency transport staff rolled her out of the NICU towards the ambulance. There we stood, speechless, my wife and I holding one another. We were now entirely devastated. This was our seventh day in the hospital, and any trace amount of optimism was now utterly quashed. Caroline and I entered the car to drive home, empty handed.
Upon admittance to CHOP's NICU West Ward, Maura was fitted with a 24-hour video EEG and placed under Bili lights to address her jaundice. A highly expert neurology team administered a battery of tests to determine the cause through process of elimination. Blood work. Cat scan. Blood work. MRI. Blood work. Genetics. Blood work. Metabolism. Blood work. On and on and on. For every test that came back negative, leaving possible the outcomes as entirely more simple or exotic without middle ground. Caroline and I were trapped in the limbo between testing and results.
Poor Maura. She knew no other life other than monitors, needles, nurses, and sleep. Seedy little ideas creeped into our minds, and germinated the doubt that our little girl would ever survive this whole ordeal, much less ever leave the hospital. That was a dark place, filled with the despair of not-knowing. We were very fortunate to have the best team of nurses and doctors who made every attempt to put us at ease. In my limited experience with hospitals, I have never met a staff that so delicately balanced medical realism with the comforts of consideration.
![](http://farm3.static.flickr.com/2714/5708126859_6e00a3eb53.jpg)
Treatment, not cure or even diagnosis, proved to be the only forward movement at this time. The team started to adjust medications. Upped Phenobarbital. No impact upon her seizures. Added Keppra. Little impact. The nature of the seizures began to change in manifestation, from apnea "blue spells" to all out tonic clonic (the old grand mal). One doctor finally dropped the "E" word, clarifying that epilepsy is defined as two or more unproved seizures with an unknown etiology (or known cause of origin).
One week. Two weeks. It would have been all too easy to loose the meter of days and nights in that room if it wasn't for us having to go home at night for our son. Having utilized paid leave (an upgrade from Family Medical Leave thanks to my empathetic administration), I had to return to work. Caroline spent every morning down at CHOP. I would visit nights when I could. We both managed to balance time with my two-year-old, even managing our "Thomas the Tank Engine" crazed son to CHOP via the Trenton to Philadelphia line as a special treat. Family life was wrapped around our new routine visiting Maura. This was our new normal.
Things began to quiet down. Maura's seizures started to slowly abate. Morning rounds were starting to entertain our questions of "when" with the conditions of three-days seizure free. Two. And then one. There was the matter of choosing another coming-home outfit. The feeling that we had put everything behind us. Friday seemed like the perfect day, as it would leave an open weekend ahead. The car ride home was filled with the breath-holding worry that another seizure would send us right back into CHOP's NICU.
![](http://farm3.static.flickr.com/2248/5797698294_deda17eda2.jpg)
Saturday was absolutely perfect, a perfect script for an unfilled movie. We proudly marched Maura up and down our Town's street fair at the amazement of all our friends and neighbors. There we were, finally a unified family happy in the the late arrival of our second born. We should have seen it coming, with the moment seeming too perfect. Sunday saw to our unnamed fear. In stepping out the door, Maura was caught in another seizure with an uncomfortably long blue spell.
We whisked Maura up to Princeton Medical, an affiliate of CHOP. There we waited five hours in the ER for the transfer order back down to Philadelphia. We panicked. In retrospect, it would have made more sense to make the forty-minute drive back down to CHOP rather than thirty-minutes in the opposite direction. If anything, the experience humbled us into completely acknowledging CHOP as pure heaven on earth (especially in comparison to the present condition of waiting in a sickly ER). Sadly, watching the emergency transport team take Maura away was an all to familiar feeling. An hour later, she was readmitted to the NICU.
![](http://farm4.static.flickr.com/3223/5763750054_18f76465d1_m.jpg)
Pushing aside her feelings of doubt, Caroline became a steel rudder, resolved to see Maura back home. At night, she would Google every known iteration of infant, seizure, epilepsy, etiology, neonatal convulsions. Most of what she read were the absolute nightmare stories other people choose to blog or forum post about. A smaller fraction returned links to medical journals riddled with professional jargon and acronyms. She stumbled across studies conducted at the Children's Hospital up in Boston where a researcher had marked success using Topamax with infant seizures. After some amount of persuasion, the medical team acquiesced to my wife's request.
Phenobarbital. Keppra. And now Topamax. Three medications administered through an nasal-gastrointestinal tube four times daily. It was a rough going as the medical cocktail was adjusted to therapeutic levels. Blood work. Blood work. Blood work. Still more testing. The seizures persisted, with upwards of seven tonic clonic episodes per day. And then… and then they started to dissipate once again. This time the medical reevaluated the terms for Maura's release: less than three seizures per day, less than three minutes in duration, without the characteristic blue spell.
For every two good days, a bad day followed in its wake. Like a pendulum swing coming to rest, the instances grew less frequent. And then, release. Having spent the past 35 days in the hospital, Maura was finally ready to come home for good. Although Caroline fought to nurse and pump, Maura didn't thrive in that clinical environment. All that time laying prone in a NICU crib. She had gained only a few ounces during her stay. Little to no development of gross motor skills. We knew we had handwork and setbacks ahead, but this time we were better prepared to live with Maura's epilepsy.
![](http://farm7.static.flickr.com/6018/5917532094_24e8432c5f_m.jpg)
We hoped the situation would resolve by itself. Best case scenario would be for the placenta to move away from the cervix as the uterus grew in size. Although there was mention of scheduling a C-section, my wife's OB was agreeable to postpone any decision making until Caroline was much closer to the expected due date. She never even came close. Nearly four weeks before the expected delivery, my wife experienced heavy bleeding and had to be rushed to the Virtua Hospital in Mount Holly.
After three days of close observation, the OB decided it was too risky to allow for her to go home. It was decided to schedule the C-section later that afternoon. This decision was necessitated by the urgency of bleeding with placenta previa. Although we were disappointed the option deliver naturally, we knew it was in the best interest of mother and daughter. We only wanted a healthy child. We only wanted what was best for him or her.
![](http://farm6.static.flickr.com/5184/5681788173_91bdc96f61_m.jpg)
The operation was marked by some 'excitement' (as the OB later came to call the event). The baby was both breech, wrapped in the umbilical chord, and didn't naturally take the first breath. The medical professionals were very cool under pressure, and we only came to learn about the riskiness of the delivery well after the fact. Maura Fern was born May 2nd, six pounds five ounces. Because she was four weeks premature, the doctors took Maura into the NICU for observation while mom recovered from her operation.
That was the longest three hours of my life. Well, at least up through the life I had lived. We anticipated the worst. Concerned that the complications with Maura's birth had cause some sort of serious condition. Our fears were belied when Maura came back to us, healthy, content. For all the hardship my wife had endured with the complications of her pregnancy, here was the perfect baby. The next day gave way to a never-ending cycle of visitations from family and medical professionals.
With the exception of jaundice, it appeared we would be able to finally take Maura home. We made the necessary preparations and following every prescribed checklist. By the end of the day, she only needed to pass a car-seat test. This baby exam mainly consisted of having Maura buckled into a car seat, under close observation, for a 90-minute period. I was so certain of ourselves, that I had started packing the car with every last possession.
![](http://farm6.static.flickr.com/5293/5685744032_f3ea8a5d26_m.jpg)
Just as I was organizing the last round of baggage, the nurse came back with disappointing news: Maura had a blue-spell towards the end of the study, and would need to stay in the NICU for observation.Sleep deprived. Emotional. Worn down from the preceding days. We were both absolutely crushed. I slowly trudged back down to the car and started regathering all the bags for at least another night's stay. Another night. We had already spent the last five nights at the hospital, and now we had to contemplate the possibility of a much longer stay.
My wife and I turned our thoughts on the "What-To-Do" with our 2-year-old son, Patrick Finn, who was staying with my parents. It seemed unfair to have him stay much longer. Caroline and I made the tough decision to split up. We had two children, both who dearly needed us. Again our options were forced. Patrick couldn't come to stay in the hospital room just as Caroline couldn't leave Maura. With a kiss, I left my wife and infant to care for my son.
![](http://farm3.static.flickr.com/2683/5752402726_ee239d4b26_m.jpg)
Later that night my wife called with an update: since my departure, Maura had experienced several more blue spells. The nurses started to suspected these apnea-life events were the manifestation of seizures. My daughter was immediately placed on EEG monitoring and administered the drug Phenobarbital. At the bare minimum, the NICU would need several more days to monitor the situation and adjust medication if necessary. Things had gone from questionable to worse. I felt so powerless as my wife and daughter were so many miles away… and there was nothing I could do to help.
Little did I know this was only the beginning. Maura suffered seven seizures on the following day. It took my every last reserve of energy and emotional strength to teach the final session in my graduate level course. The day thereafter my parents took Patrick for the day while I visited Caroline and Maura at the hospital. The NICU decided the situation called for more specialized services which could not be provided by Virtua. We would need to send her to either St. Christopher's, Dupont, or Children's Hospital of Philadelphia. There was no question, as CHOP's reputation was unsurpassed in our minds.
![](http://farm6.static.flickr.com/5064/5689068864_dba1089764_m.jpg)
For the first time I outwardly cried. Such a small child. Vulnerable. So many miles apart from her parents. Separated. I cringed to see her securely placed in the incubation box as the emergency transport staff rolled her out of the NICU towards the ambulance. There we stood, speechless, my wife and I holding one another. We were now entirely devastated. This was our seventh day in the hospital, and any trace amount of optimism was now utterly quashed. Caroline and I entered the car to drive home, empty handed.
Upon admittance to CHOP's NICU West Ward, Maura was fitted with a 24-hour video EEG and placed under Bili lights to address her jaundice. A highly expert neurology team administered a battery of tests to determine the cause through process of elimination. Blood work. Cat scan. Blood work. MRI. Blood work. Genetics. Blood work. Metabolism. Blood work. On and on and on. For every test that came back negative, leaving possible the outcomes as entirely more simple or exotic without middle ground. Caroline and I were trapped in the limbo between testing and results.
Poor Maura. She knew no other life other than monitors, needles, nurses, and sleep. Seedy little ideas creeped into our minds, and germinated the doubt that our little girl would ever survive this whole ordeal, much less ever leave the hospital. That was a dark place, filled with the despair of not-knowing. We were very fortunate to have the best team of nurses and doctors who made every attempt to put us at ease. In my limited experience with hospitals, I have never met a staff that so delicately balanced medical realism with the comforts of consideration.
![](http://farm3.static.flickr.com/2714/5708126859_6e00a3eb53.jpg)
Treatment, not cure or even diagnosis, proved to be the only forward movement at this time. The team started to adjust medications. Upped Phenobarbital. No impact upon her seizures. Added Keppra. Little impact. The nature of the seizures began to change in manifestation, from apnea "blue spells" to all out tonic clonic (the old grand mal). One doctor finally dropped the "E" word, clarifying that epilepsy is defined as two or more unproved seizures with an unknown etiology (or known cause of origin).
One week. Two weeks. It would have been all too easy to loose the meter of days and nights in that room if it wasn't for us having to go home at night for our son. Having utilized paid leave (an upgrade from Family Medical Leave thanks to my empathetic administration), I had to return to work. Caroline spent every morning down at CHOP. I would visit nights when I could. We both managed to balance time with my two-year-old, even managing our "Thomas the Tank Engine" crazed son to CHOP via the Trenton to Philadelphia line as a special treat. Family life was wrapped around our new routine visiting Maura. This was our new normal.
Things began to quiet down. Maura's seizures started to slowly abate. Morning rounds were starting to entertain our questions of "when" with the conditions of three-days seizure free. Two. And then one. There was the matter of choosing another coming-home outfit. The feeling that we had put everything behind us. Friday seemed like the perfect day, as it would leave an open weekend ahead. The car ride home was filled with the breath-holding worry that another seizure would send us right back into CHOP's NICU.
![](http://farm3.static.flickr.com/2248/5797698294_deda17eda2.jpg)
Saturday was absolutely perfect, a perfect script for an unfilled movie. We proudly marched Maura up and down our Town's street fair at the amazement of all our friends and neighbors. There we were, finally a unified family happy in the the late arrival of our second born. We should have seen it coming, with the moment seeming too perfect. Sunday saw to our unnamed fear. In stepping out the door, Maura was caught in another seizure with an uncomfortably long blue spell.
We whisked Maura up to Princeton Medical, an affiliate of CHOP. There we waited five hours in the ER for the transfer order back down to Philadelphia. We panicked. In retrospect, it would have made more sense to make the forty-minute drive back down to CHOP rather than thirty-minutes in the opposite direction. If anything, the experience humbled us into completely acknowledging CHOP as pure heaven on earth (especially in comparison to the present condition of waiting in a sickly ER). Sadly, watching the emergency transport team take Maura away was an all to familiar feeling. An hour later, she was readmitted to the NICU.
![](http://farm4.static.flickr.com/3223/5763750054_18f76465d1_m.jpg)
Pushing aside her feelings of doubt, Caroline became a steel rudder, resolved to see Maura back home. At night, she would Google every known iteration of infant, seizure, epilepsy, etiology, neonatal convulsions. Most of what she read were the absolute nightmare stories other people choose to blog or forum post about. A smaller fraction returned links to medical journals riddled with professional jargon and acronyms. She stumbled across studies conducted at the Children's Hospital up in Boston where a researcher had marked success using Topamax with infant seizures. After some amount of persuasion, the medical team acquiesced to my wife's request.
Phenobarbital. Keppra. And now Topamax. Three medications administered through an nasal-gastrointestinal tube four times daily. It was a rough going as the medical cocktail was adjusted to therapeutic levels. Blood work. Blood work. Blood work. Still more testing. The seizures persisted, with upwards of seven tonic clonic episodes per day. And then… and then they started to dissipate once again. This time the medical reevaluated the terms for Maura's release: less than three seizures per day, less than three minutes in duration, without the characteristic blue spell.
For every two good days, a bad day followed in its wake. Like a pendulum swing coming to rest, the instances grew less frequent. And then, release. Having spent the past 35 days in the hospital, Maura was finally ready to come home for good. Although Caroline fought to nurse and pump, Maura didn't thrive in that clinical environment. All that time laying prone in a NICU crib. She had gained only a few ounces during her stay. Little to no development of gross motor skills. We knew we had handwork and setbacks ahead, but this time we were better prepared to live with Maura's epilepsy.
![](http://farm7.static.flickr.com/6018/5917532094_24e8432c5f_m.jpg)
Wednesday, September 7, 2011
Day In A Sentence: Sept. 7, 2011
"Day In A Sentence" is brought to you by Kevin's Dogtrax blog. This week he was asking for the blogosphere to submit the D.A.I.S. in haiku format. Here's my take on the first day of (middle) school.
The quiet stillness
of anxious first impressions
is far too short lived.
of anxious first impressions
is far too short lived.
Tuesday, September 6, 2011
"What Sarah Said": a lo-fi, live action, web comic (episode 3, Back To School)
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi5n5vADWEnUFU2_YMg8uhks6f_sWc_iLdgcWEPaxjsc2uHz1VS4-ZLiujZEYrw5dW-j6EqKrocp0T1lx8SE6uNzWs6OSkV-7WWVGZtrz7HswpGEOSpFpI6doCdYnRy1RYgmVrkIO_i0Y/s400/What+Sarah+Said+Welcome+Back.jpg)
I wanted to bring the life of my first few "Sarah" FaceBook postings into a more fully realized web comic. So here she is: the disciple of the obvious (who is a few clicks counter-clockwise off kilter), ready to report her observations of a slightly idiosyncratic world. ***Please click the comic to magnify the image.***
Monday, September 5, 2011
The Boy's Badge of Summer
My son lacks the finesse of eye-foot coordination (it must come from his mother's side of the family). Anything faster than a trot, and my son is nearly guaranteed to stumble and fall flat on his face. Prepping him with the parental warning of "no running" has little effect, and apparently pain has no memory... Otherwise P-Finn would have learned his lesson many times over.
I'm somewhat at odds here. On one hand, the kid clearly needs to burn off pre-nap energy, not to mention the whole bit about learning to run for enjoyment. Sure, give him a rolling park. Grass stains have a fairly quick recovery time. But oh, just a little bit of concrete is enough to grate away layers of skin and scabs. Damn, that sucker would bleed bright, bright red. Just enough to garner the attention of any onlookers.
The kid knows how to play sympathy's fiddle. "Daddy, I have a boo boo. It's bleeding. Pick me up." He would just stand there, paralyzed, one hand lifting his pant leg, giving the trickle of blood an unobstructed path towards his ankles. Depending on his audience, he might either give the sobbing performance of a lifetime, or laugh it off and jump right back into playing. You never quite know, though trust me: the remedy is not the answer he was looking for.
I did had some minor success in daddy triage utilizing a rolled paper towel to bandage the knee. This approach exaggerated the painful appearance of his injury. "I don't wand a band aid," he would pine on with a grimace that would suggest the cure more painful than the injury.
So... I quickly changed my approach and called it a "boo boo badge." It sounded somewhat tougher to me. Yeah, that didn't work either. It all came down to a moment's distraction while I slapped that band aid on his knee. Let me tell you, peeling away a half-way removed band aid was cause for an even bigger production!
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxgA2O023cFk3wVcXrlhJz628P1nFu4j7bT064al7GThGRO_-BNYFU6OtYpApZUngmdF3IbBdTGiQx1tIl8O3YTmtnjKzQxorIJqUAlI-e11jbtU1W0t2tQXRf2bKl4etGFJ3B0keM2NA/s400/P-Finn+Skinned.png)
The mosquito bites. The unexplained bruises. A blotch of what might be poison ivy. Splinters. Bee stings. And the skinned knees. These are the perpetual marks of a boy's badge of summer.
I'm somewhat at odds here. On one hand, the kid clearly needs to burn off pre-nap energy, not to mention the whole bit about learning to run for enjoyment. Sure, give him a rolling park. Grass stains have a fairly quick recovery time. But oh, just a little bit of concrete is enough to grate away layers of skin and scabs. Damn, that sucker would bleed bright, bright red. Just enough to garner the attention of any onlookers.
The kid knows how to play sympathy's fiddle. "Daddy, I have a boo boo. It's bleeding. Pick me up." He would just stand there, paralyzed, one hand lifting his pant leg, giving the trickle of blood an unobstructed path towards his ankles. Depending on his audience, he might either give the sobbing performance of a lifetime, or laugh it off and jump right back into playing. You never quite know, though trust me: the remedy is not the answer he was looking for.
I did had some minor success in daddy triage utilizing a rolled paper towel to bandage the knee. This approach exaggerated the painful appearance of his injury. "I don't wand a band aid," he would pine on with a grimace that would suggest the cure more painful than the injury.
So... I quickly changed my approach and called it a "boo boo badge." It sounded somewhat tougher to me. Yeah, that didn't work either. It all came down to a moment's distraction while I slapped that band aid on his knee. Let me tell you, peeling away a half-way removed band aid was cause for an even bigger production!
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxgA2O023cFk3wVcXrlhJz628P1nFu4j7bT064al7GThGRO_-BNYFU6OtYpApZUngmdF3IbBdTGiQx1tIl8O3YTmtnjKzQxorIJqUAlI-e11jbtU1W0t2tQXRf2bKl4etGFJ3B0keM2NA/s400/P-Finn+Skinned.png)
The mosquito bites. The unexplained bruises. A blotch of what might be poison ivy. Splinters. Bee stings. And the skinned knees. These are the perpetual marks of a boy's badge of summer.
Friday, September 2, 2011
Star Wars Pancakes
I was psyched the day Caroline came home with Star Wars™ Vehicles Pancake Molds she acquired from a clearance sale at Williams Sonoma. Saturday morning breakfast was elevated to a whole new level: not only could I cook a nutritive breakfast, but now my family could be 'force'-fed (pun intended).
I ripped through the cardboard packaging, quickly discarded the directions and special recipe, and readied up the batter. C'mon. Who has time for reading instructions with a hungry family ravenously waiting for their morning meal? Cooking pankcakes is an inherent part of fatherhood, along with BBQ grilling and potty training your son to pee on trees. How could I fail?
ANSWER: quite easy.
The molds are quite complex in shape. Intricate appendages stem off a central body. I found that my pancake batter proved to be too thick for the smallish spaces and didn't completely fill the mold from a central pour. I adjusted by trickling in more batter, nearly overflowing the mold. Way more cake'ish than I was aiming for, though I thought it seemed the lesser of two evils than eating a half-formed X-wing fighter.
I distinctly remembered the words NON-STICK advertised alongside a glossy image of a perfectly formed Millenium Falcon. Could not be farther from the truth.
The half-cooked batter stuck to the mold like you wouldn't believe. I found myself tracing the outline of the mold with a butter knife to pry the pancake from the frame just so I could cook the other side. My once 'rebel rebel' Jedi Knight X-wing fighter looked like it had been struck down by the Death Star. Next time I'll need to generously coat the mold with a non-stick spray or bathe it in an immersion of vegetable oil.
Not wanting to disappoint my 3-year-old son, I fell back on an old standard: the three-pour Mickey Mouse pancake. Despite having a busted appearance, the X-wing fighter was quite tasty with a liberal dousing of butter and Vermont maple syrup. A pancake breakfast never fails.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgliVOvCOuD-qPQeEwDn4myVJlmQwbznBov8_q3b_Xx8NVOLlOYMHYcdci25SdDoqoKBKuM-kcP22zK8WQZWm-qQKGUpokpyhT8S_l9Hz4O-zCssM-borJ2je7PuXOi6tYr6S53oelAJCE/s400/Star+Wars+Pancake+Form.jpg)
I ripped through the cardboard packaging, quickly discarded the directions and special recipe, and readied up the batter. C'mon. Who has time for reading instructions with a hungry family ravenously waiting for their morning meal? Cooking pankcakes is an inherent part of fatherhood, along with BBQ grilling and potty training your son to pee on trees. How could I fail?
ANSWER: quite easy.
The molds are quite complex in shape. Intricate appendages stem off a central body. I found that my pancake batter proved to be too thick for the smallish spaces and didn't completely fill the mold from a central pour. I adjusted by trickling in more batter, nearly overflowing the mold. Way more cake'ish than I was aiming for, though I thought it seemed the lesser of two evils than eating a half-formed X-wing fighter.
I distinctly remembered the words NON-STICK advertised alongside a glossy image of a perfectly formed Millenium Falcon. Could not be farther from the truth.
The half-cooked batter stuck to the mold like you wouldn't believe. I found myself tracing the outline of the mold with a butter knife to pry the pancake from the frame just so I could cook the other side. My once 'rebel rebel' Jedi Knight X-wing fighter looked like it had been struck down by the Death Star. Next time I'll need to generously coat the mold with a non-stick spray or bathe it in an immersion of vegetable oil.
Not wanting to disappoint my 3-year-old son, I fell back on an old standard: the three-pour Mickey Mouse pancake. Despite having a busted appearance, the X-wing fighter was quite tasty with a liberal dousing of butter and Vermont maple syrup. A pancake breakfast never fails.
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdrxmIWZLyAuQqvNDfuNWz0WKZhIngQv7DiTJ2U2dzJH2MHNCA6KcRJWS7920xEzSqxeKc4IDfgB5J4thTimuj4AXn8TMjHATbUwQmkD6kMDjArID8LJDQkVfnEzm0Gk0clqDEOylDPlQ/s400/Mickey+Pancake.png)
Subscribe to:
Posts (Atom)