Simply Smilin'

So we have now discovered one of the most majestically life-affirming things ...EVER!!!

SMILES

Suddenly, Mr. Row is expressive, emotive, adorable.

:):):):):):):):)

He has learned how to smile, and has some laughs in the making. 

If I go across the room then come upon him without warning, he sees me and can't contain himself. This is an incredible feeling, not only because it feels like he truly loves us, but because he CAN express himself. He is no longer merely a hapless, sluggy baby, resigned and numb to the events going on around him. He is responsive. 

With all the concerns about his development because of the seizures, seeing him make these wonderful faces (even the sad ones) is just empowering. It allows us to really see him, his personality. He is a real little boy, not a damaged, broken little baby that needs help. He is simply Row, my sweet, funny, wonderful guy. This is more comforting to Mommy and Daddy than I can possibly express.

He makes us proud every day.

This gives us such glorious hope for the future, and it makes the prospect of this next month we have with him (before his surgery) so appealing. We are going to have a world of fun, our calm before the storm.

This is amazing...

Next Time: Our new bouncy toy...

Guilt

      I want to take some time to discuss the gut-wrenching guilt I felt/feel regarding Row's condition. I will preface this by stating that I KNOW that there is nothing that I did or did not do, either during pregnancy or afterward, that caused this problem. I UNDERSTAND that as a fact, and I accept it as fact. Unfortunately facts are feeble when sent into battle against your own feelings. What I KNOW and what I FEEL are entirely disparate things.
      I KNOW that Row was born this way and his illness has nothing to do with his stint in my belly. I KNOW that there is nothing that Paul and I have done wrong since his birth to cause his condition. I KNOW these things.

                                 
  I, however, FEEL that I did this. I did this to my darling.
 I ate one too many cheeseburgers, had one too many coffees, pulled on too many shifts cleaning rooms at the hotel. I fell during rehearsals for ANNIE (though just to my knees, nothing affecting him). I didn't drink enough water, I didn't get enough exercise, I didn't eat enough vegetables. I walked through clouds of second hand smoke too often. I didn't get my body into great condition before becoming pregnant, I didn't do my Kegels, I didn't read enough about labor and delivery. I failed to deliver him properly and had to do the last minute C-section. I hated nursing, and I never wanted to do it, it made me feel like a soggy, wet animal and I resented it...he felt this from me, he must have, and we, therefore, failed to form a true nursing bond, so we quit and switched to pumping. Then I didn't pump enough. I didn't drink enough water and pump often enough and my supply ran out, so now he has formula. Just formula.
     He is broken, his quality of life is diminished and it is entirely my doing. There is no amount of logic, reason, or empirical evidence in existence that can change my opinion on this, no matter how unreasonable I know that is. It simply is. He's been my sole responsibility since April 21st, 2012...the day he began, and it has been my job to live for him, exclusively.

    I was too selfish and cut corners to satisfy myself, as I have always done, as I will, likely, continue to do. I try every day to do right by my son but I feel like I'm just on an out of control treadmill, desperately trying to keep pace. (I hate physical exertion, so this metaphor is particularly effective for me.)
      These feelings are understandable, but unjustified. Every Doctor has assured me that there was nothing I did to cause this and nothing I could have done to prevent it. Despite the evidence, I can't help blaming myself, because admitting that it just happened at random is terrifying. If I can blame myself, find a cause, then I can avoid this in the future, I can improve, I can make it right...I can fix it. If this was a random curse of fate then I am helpless, helpless to help Row or his subsequent siblings (assuming we are able/allowed to have them, genetic tests still hold the sword of Damocles above us on that one).
     I am fortunate, because my angel has a solution in store, one that will (theoretically, and based on many success stories) give him a real life that is barely affected by these early worries at all. Many parents are not so lucky. There are too many ailments to begin listing that affect the children of the world, and my heart aches for the fears their parents endure. Rowan is lucky; he is not in pain due to his seizures and he has a solution to his problem, one that should solve everything permanently. He is happy and developing well and has a vast web of love and support. He will be fine, and so will his parents.

In time.

Two Firsts

We had two firsts today.

The first first was vomit. Today was Row's first official puke. It came quite suddenly just as we were putting him in the car...luckily we hadn't driven off yet or...yikes!

The second, and far more enjoyable first, was some amazing face time with Daddy. Little man laid in beside Dad and took some time to stare intently at him. He then proceeded to reach out, touch face. He grabbed Dad's nose, beard, mustache, shirt. Over and over and over.

This is the first time we've seen him intentionally reach for something and successfully grab it. He only used his left hand, which is, of course, his dominant side, since the left side of his brain is seizure central, but it was great! He's making some much progress, day by day!

A New Hope

For a second opinion we ventured two and half hours from home to a world class facility ranked 7th in the nation for pediatric neurology/epilepsy, where a team of superb doctors caucused to discuss Mr. Row.

The unanimous decision from the team was that a complete hemispherotomy would be the best option for the sir. This procedure sounds, and is, scary, but will ultimately give him the greatest chance for a normal life and normal development.

His surgery will happen this summer, probably in July.

So now we're up to date...

Hemispherotomy Info

Begin the Beguine (part two)

We returned to the Children's Hospital on February 28th. We stayed for 15 days. During those two weeks Row had several more EEGs, a lumbar puncture, to test his spinal fluid for various genetic conditions, blood tests up the wazzoo and he went on and off of 6 medications, all of which had the potential to make him sleepy, listless, dizzy, and/or nauseous...in any combination. Despite all the drugs being maxed out in turn, his seizures continued. My husband and I counted each of Row's seizures and log them for the doctor and nurses, this could be dozens per day; most were one second or less but they come in clusters of 5-20 (later at home that number would grow to over a hundred per day). So we counted the number of seizures and the length of each one.

The worst part of this experience we the hours and hours of wondering, googling, and crying. (P.S. don't Google "Baby Seizures", it will never be a pleasant read) Our Pediatric Neurologist, the only one in the whole hospital system, would/could not give us any definitive answers the entire time we were there. Our numerous requests for a diagnosis were answered with vague claims that none could be made without the results of all the lousy blood tests that had been sent off to who-knows-where. So we were left alone to consult Dr. Internet, no matter how much we tried not to, we were desperate for answers, even terrible ones. So we read about horrible conditions and results for little ones with seizure syndromes, and we were frankly horrified. 

So there we were, sitting in a hospital room, eating mediocre food, watching mediocre television, sleeping on deeply uncomfortable beds, wondering if these lame, feeble days were some of the last we'd be granted with our beautiful son. We didn't know if we would be dealing with a completely destructive condition that would leave him permanently incapacitated, or if he would even survive at all. No on would tell us! Near the end of our visit the doctor  mentioned that we were running out of medications to try and that if we couldn't stop the seizure with these meds then his "last ditch effort" was to put him into a 48 hour medically induced COMA to give his brain enough rest to possibly stop the seizures for that time then to wake him up on a new medication to start fresh. 

All I remember after that conversation was weeping uncontrollably. I grabbed my darling, with shaking hands, cradled him in my arms and rocked back and forth on a stiff chair sobbing and trembling, fearing that he would be taken from me forever...possibly the very next morning. 

I hardly dare to make this statement, because I do not know the feeling of losing a child, and my heart breaks for those who do, but I feel like the anticipation of losing your child must be worse, somehow.   If it's done, then it's done, and there is nothing you can do. It's over. If, however, you know (or think) it's coming, and are watching, helpless, it is pure torture. 

It's the difference between falling onto the train tracks at just the wrong moment, and being tied to them for hours before the train comes. Anticipation. Horror.

Mercifully, we chose to forgo the coma option and asked simply to max out the medications he was on and give them a bit more time to work. Which was a great idea, because after a couple days his seizures decreased enough to allow us to go home. 

So we took our meds, out lack of diagnosis, and our handsome man and went home, planning to seek a second opinion....

(*Parents out there: DO NOT feel like you have to listen to everything a doctor says. They are not gods. It is OK to seek other opinions and do your own research. Ask every question as many times as you need to. It's too important. Ultimately YOU decide what care your child gets, they can't just take your baby and carve them up without your consent, so the control truly is yours, don't be afraid to put your foot down*)

Rockin' a Spider-Man Bandaid

Begin the Beguine (part one)

           On February 16th, 2013, when Rowan was six weeks old, he suddenly had a seizure. His eyelids fluttered, his head snapped back several times in rhythm and eyes strayed fiercely to the left. These movements lasted for about 40 seconds, then ceased. His Mommy, Daddy, and Aunt Rachel all paused for a moment, a little perplexed, and before they could even voice their concerns about what had just happened, it happened again. Daddy quickly whipped out his cell in order to capture a video of Rowan's "performance" to show the doctor. After calling Row's doctor everyone began getting ready to head to the children's hospital about half an hour away, then the seizures starting to grow in strength and number; they were right on top of each other. So we drove, quickly, to the nearby emergency room instead.
           After a veritable three stooges routine from the nurses, (it took three of them to land an IV and one of them walked in with her cell phone, keys, and shades, then proceeded to touch my son's blood without washing her hands), he was finally able to be shipped over the the hospital we'd intended to go to, in an ambulance, no less.
          This is when the horror set in. Standing around that room watching needles and tubes, and bumbling women in cartoony scrub tops muddle up my sad little convulsing baby began to send me into a genuine panic attack. I was trying desperately not to sob aloud because it would lead to an uncontrollable fit, which would be counter productive. So I held strong...as well as I could, and much more so due to the presence of my best friend, who was, fortunately, paying us a weekend visit at the time.
         Then we arrived at the Children's Hospital, where we thought we'd find some answers..ha! We spent several hours in the boiling hot emergency room...waiting and waiting to be admitted. Several very young girls with various initials after the names on their name tags came in to fumblingly poke and prod my poor man with various needles and vials, all the while taking it in turn to ask us the same series of questions over and over and over. We took advantage of this frustrating time to alert our family of the situation. All of them were hopelessly far away in the distant land of Florida, which is our fault, since we chose to migrate to the midwest about two years prior, but in those first frightening hours the distance felt insurmountable.
         We were finally admitted and began a four day stay that proved to be full of a great deal of testing, blood drawings, EEGs, and MRI and having my be-diapered darling tethered to his bed by heart monitors, etc. After trying three  anti-epileptic medications we were sent away with them to await the results of said tests at home. Little did we know just how quickly we would be returning...