Hello, Hola, Ciao, Bonjour

This...is Leahness Stephanie Pinilla.

There is no one on the earth, speaking as a bias mother of course, quite like this little girl. The bottom picture is a picture of her a few years ago, but I chose it for no other reason except it portrays who she is through and through. These were the stay-at-home days for me. Ah, the days! Those dreadfully brilliant, preoccupied with nothing more than the pursuit of domestic bliss days. HA! The days I, in brutal honesty, felt compelled to voluntarily be dunked head first in a vat of boiling tar, Tower-of-London-style. Due mainly to hours of tugging and pulling my little angel into obedience and some resemblance of a routine. Looking back from my Herman Miller executive chair atop my newly resuscitated career, I would absolutely eat fire ants for those days back. In seriousness though, every moment from the peanut butter slathered living room fiasco of '04 to endless hours at the zoo learning animal names, I wouldn't trade my 6 years raising my daughter for all the money in the world.

Now that Her Royal Highness is 6 years old, the trials have mounted. She started Kindergarten, bravely and excitedly (uh that was her, you should have seen the mess I was!). She started Ballet and is pirouetting herself into opening day at the NYC Ballet, or at least Little Ballet end of semester performance. She's very close to reading by herself and sings remarkable on key! To top it all off she has developed something I am quite proud of...an English sense of humor.

With the pretty butterflies and rainbows stuff out of the way I can move on to what we've recently been given to figure out as parents of this remarkable girl. Leahness started having moderate seizures about a month ago. I'd noticed for a while that she would very suddenly, for about 5 seconds or so, stare into space with a look of complete blankness. As a mother, you know when something is just not normal. People would just tell me that she probably has stomach pains, or that she was overwhelmed by something...but I just had a gut feeling something wasn't quite right with her brain. It made me sound horrible to my family and friends. I'd always say with all due seriousness, "I think something is wrong with her brain". It made me look like a horrible mother, I guess, because people would chuckle uncomfortably. Even the pediatrician would tell me something like, "I'm sure it's just her tummy or sleepiness". Well she was wrong, wrong, wrongo. One Sunday morning as we were leizurely getting ready to get ready for church, she froze in tracts and her head began to jerk and her entire upper body was just constricted. Her eyes were rolled back in her head and she was gasping uncontrollably for air. It lasted for about 30-40 seconds. However, when the doctors were asking me how long, I just kept thinking 10 minutes?!?!? It felt like it! After a month ago, everyone who laughed or scoffed it off when I would say something was wrong, now knew I was right...AAAAAAAAWH! After that first trip to the ER, they sent us home with, "Just go see her Pediatrician." They did blood work, a CT scan, and found nothing....I wanted to scream. Especially because I was the only one who saw it happen and it didn't happen at the hospital, so it looked like I might be making it up! So when it happened 2 days later and my husband witnessed it, we went to the ER demanding they figure this out NO MATTER WHAT IT TAKES!!! Let me digress to say this: A seizure is NOT something you want to see your child do EVER! It is a type of emotional charge that strikes you to the core, shakes your ground, makes you feel like you've been transported to another planet where the inhabitants only want to completely turn your world upside down. You are powerless. As any mother can attest, being powerless to help your child in a time of need is like pure torture... to put it very lightly.

After being admitted to Children's Methodist Hospital, she underwent some more tests. The one that gave us a lot of answers was the EEG test. It turns out my daughter had been, we don't know how long, having seizures inside her head every 5-7 minutes. The ones we see are only more severe. They came to a diagnoses of Epilepsy, and we were discharged with prescription in hand and instructions to go see a Neurologist and get an MRI. She has been doing good on the Keppra and B6; very little seizure activity. She has some staring sessions once in a while. She had the MRI and we are being told to wait until April 9th to see the doctor about the results. The only problem has been her anger and frustrations on this medicine. The doctor put her on another med called Depakote which has a mood-stabilizer in it, but it too isn't keeping the emotions from running rampant.

Her having epilepsy explains a lot about her now. For instance, she has literally had a major freak-out cry at least once every single day of her entire life, save 2 days....ever.....literally (a second literally to drive home the point that this is in no way an exaggeration). Now that we know there really is a physical problem, we can start to figure out how better to raise this special child, who up until now we just used the psycho-babble term "High Spirited Child".

So, that is my Leahness. The reason why God has made it clear that one child is enough for our home. We would love to have another one, but we are still taking precautions to prevent it for now. Our Lord God is the ultimate physician and gives her, me, my husband, and my mother (who takes wonderful care of her after school and beyond), strength daily to not strangle her! No, we wouldn't dream of it. It is very hard though for all of us to remember that her problems are VERY chemical/physical and are not our fault and definitely, God bless her, her fault.

I hope to use this blog as a journal, if you will, to try and make sense of some things. Get ideas from ANYONE...I'm very open to ideas, if they make sense and apply. That said, I do not want this to become all about her epilepsy. I also want to just post as a mom raising a rather amazing kid in her own natural right. I want to post triumphs, events, ideas, rants, pictures, videos and art of Leahness' life. It is important she knows she is just like all the other kids, only with a challenge in her life that will ONLY make her a stronger person.