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Our Journey, Part III - The Unexpected Discovery

Funny face, I love you!
To say that I was nervous about our first appointment with Dr. Khan would be an understatement.  Just the word "neurologist" brings to mind all of the possibilities of what can go wrong with the human brain.  I kept telling myself that everything would be fine, and that was the attitude I tried to keep as we got ready and left the house on that cold morning in February.
 
To help reassure myself, I tried to find out all that I could about what to expect from this kind of preliminary visit.  After all, the brain is hidden inside the skull, and I didn't expect the doctor to just start hooking my daughter up to wires right away.  From what I had gathered, both from the doctor and online, this first visit would just be to see how Penny performed on a battery of basic tests.  This sounded fine, but the amount that was still unknown made me nervous.
 
Once at the office, after we got all of the insurance stuff out of the way and they called for us to come back, the first thing on the agenda was height and measurement.  Just as I suspected, Penelope was the same as she is now - petite.  Nothing wrong with that, of course, and it actually provided a bit of much needed humor to a nervous mother.  My baby is bitty, and I'm proud of her. ;-)
 
Dr. Khan and her assistant soon arrived in the room, and things went smoothly from there.  Penelope did well on the tests, though I still don't know exactly what they were looking for.  Giving high-fives, hopping on one foot, following the doctor's finger with her eyes - basic stuff, and I was glad for it.  The testing didn't last long, and I was a little surprised to learn that the next step would be to schedule three different specialist visits - an EKG, EEG, and MRI, all at different times and locations.
 
One detail that didn't go unnoticed was the type of EEG that would be required - the sleep deprived kind.  Spoiler alert: it was exactly as fun as it sounds.
 
A few weeks later, we went in for the EKG test.  It was super easy, painless, and Penelope did a great job.  Just a few stickies on the chest, wait a few minutes, and boom, it was over.  I could only hope the rest of the testing would be so easy.  Unfortunately, it wasn't.
 
The next test on the agenda was an MRI.  Neither Ian nor I had ever had one before, so we didn't exactly know what to expect.  What we did know was that it was scheduled for early in the morning (6 AM) and that Penny couldn't eat or drink for 8 hours leading up to it.  That part was easy enough, since she was asleep for most of that time.
 
Once again, Penny shone in all of her bravery and spunk, and was in a great mood the whole time.  The most impressive part came when she had to get an IV for sedation.  You see, kids can't be trusted to sit still (for good reason, let's be real here) and the MRI machine is freezing cold and very loud, so sedation is standard protocol.  The nurses came in and did their nurse thing, and though I could see the fear in my daughter's eyes as Ian moved in close to distract her (I couldn't move in as close, since my baby bump was getting pretty big by this time), she said she didn't want to look away from them putting the needle in her hand.  She didn't cry once, but when she was bandaged up she only remarked, "That was kind of scary!"  I couldn't be more proud of my little trooper.
 
The supervising anesthesiologist told us that it would take about a half hour to take all the images they needed.  Time slowed to a crawl as we tried to pass the time with distracting phones, sips of coffee, and words of reassurance to each other.  We tried to peek in once or twice, but since I was pregnant, I was told I had to keep my distance from the machine across the hall where my first baby lie there helpless, hooked up to tubes and unconscious.  My heart broke in that moment, and even now I can feel that sense of helplessness creep up on me.
 
The time was soon up, and they wheeled Penelope back into our little prep room, with its décor of balloon wall stickers and a little corner TV forever etched in my mind.  She came to somewhat slowly, but showed no signs of nausea.  The anesthetic worked exactly as they said it would, and within minutes she was ready for sips of water and juice, and hungry for the crunchy snacks we had brought along.  Before long, she was back to her old self, and we were ready to go home.  However, there was one more thing the doctors wanted to discuss with us before we left.  Something we could not have possibly expected.
 
You see, the good news was that the initial review of the MRI showed no visible structural anomalies in her brain that would be responsible for her seizures.  But, she does have something called a Chiari Malformation.
 
A what now?
 
As we learned at that time, and from subsequent follow-up research, Chiari Malformation Type I is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area.  This is fancy doctor talk for "the base of her skull is too small, so the bottom part of her brain is sticking out more than it should."  Needless to say, we felt pretty surprised and confused by this news, though I'm sure we tried our best to put up a good front at the time.
 
We thanked the doctors for everything, Penny graced the staff with her usual charms, and we soon found ourselves back into the rhythm of everyday life.  The only thing was, now it was a life lived with a constant fear hovering around the back of our minds.  You see, the most common treatment for Chiari Malformation is something called decompression surgery.  Basically, the idea is that the surgeon would remove that extra bit of skull at the base, hopefully bringing it back to a normal state.  This is not a 100% effective procedure, and since her skull is still growing, it is hard to predict what the effects would be down the road.  And while Penny has not yet been recommended for this surgery, the possibility of it being required in the future is not off the table.
 
And so, after a visit which we hoped would solve the mystery of Penny's two seizures in the Autumn, we ended up learning nothing about them.  Instead, we found out something totally different which would require more follow-ups and yes, more worrying.
 
The good news is, if we were looking for an answer to why she had those seizures in November, we would soon have an answer.
 
But that's a story for another time.
 
Until then, thanks for reading, and thank you for your support of the Brave Bambino Clothing Company!
 
XOXO,
 
Leslie (aka Mom)


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