a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Monday, December 17, 2012

The Inevitable

Post Oia's 2nd EEG in early '09, her neurologist shared two things with Rob and I that have stuck with me ever since. The first thing he informed us of is that Oia's brain activity is most "aggresive" at night. Seems odd that while her tiny self is at complete rest, her irregular brain triggers and fires like a tiny warzone, a potential breeding ground for seizures. The second thing he shared with us was that there would be no mistaking a seizure should she ever experience one, noting that her entire right side would jerk rapidly. He was only right about one of those things. As we learned in the early morning hours of last Sunday, her seizures look nothing like he predicted.

Instead, her first seizure just a day and a half ago, was absent of any jerking at all. Oia remained heavy, limp, somewhat unresponsive, and appeared to have an "aura" beforehand that resembled the need to vomit (gagging, excessive thick secretions, and dry heaving). These behaviors, or "aura", quickly manifested into eyes that locked in a leftward gaze and a girl whose arms and legs splayed from her body. 'Twas the peak of her seizure, only a few minutes that felt like an eternity, and the moment I rushed for her Diastat.

A seizure was bound to happen sooner or later. I considered it the inevitable and feared one almost every day. But the good news is... it happened at home with both Rob and I at her side. The good news is... it wasn't as violent of a seizure as our neurologist said it would be. The good news is... my sister was visiting us from out of town the night it happened so there was no frantic rush to find someone to stay with Esme in the middle of the night while Rob and I were with Oia in hospital. The good news is... we never started Oia on Adderall as we were advised to weeks ago, which now I am certain would have more than likely caused a seizure. This seizure just came unexpectedly and on its own. And more good news is... the Diastat that I had been toting around just in case for the last couple of years freed Oia of the seizure just moments after it was administered. She was sleeping soundly by the time the squad arrived.

We remained in the ER from about 630am - 1130am Sunday morning. Oia slept on Rob for a good bit of our short stay but while awake she cried for home. She was tired and I'm sure confused. Neurology confirmed, based upon our descriptions, that Oia had a partial complex seizure. And now that the inevitable has happened, it's been suggested that we begin a daily anti-seizure med and it appears as though we get to welcome the new year with an EEG as well. It's time for an update of that sweet brain since obviously activity appears to have changed.

My heart tells me that Sunday's seizure has been in the works for a long while now. There have been some suspicious happenings/behaviors with Oia in the past that left us puzzled (inconsolable crying, eye gazing, similar aura, etc). Now after Sunday's episode, those suspicions were more than likely atypical neuro activity that fizzled before anything manifested into a full seizure as it did this weekend. My heart also tells me that the daily anti-seizure med is the right choice. It's time. First dose was given tonight.

Five years of seizure free living was nice. Kiddos with Schizencephaly are supposed to have seizures and neurologists all along have been confused as to why Oia didn't have them. I count my blessings. I know how fortunately we were. And I also know how fortunate we still are. We hope we are able to keep these monsters under control and at bay forever. We'll give it nothing but our very best. But only time will tell. Unfortunately though, some things are just out of our control.

Thursday, December 6, 2012

House and Ho-Ho

If I had a dollar for every time I have sat down at this darn computer in the last month or so to pound out a post, I'd be one really rich individual. But, I can't seem to put it all together. A hand-written list sits beside me of all the things I need to share but lately I've fallen short every single time. So much is swimming in my head and unfortunately there's never enough mental energy by day's end to make it happen. I remain busy in the shadows of two beautiful and very demanding little girls who are literally changing in big ways with each passing day. I'm smiling a lot. And praying for patience a lot too. And then smiling some more. I'll take their smile inducing antics over money any day.
The weather here in Virginia has been very warm and mild. After Oia gets home from school each afternoon, we find ourselves playing outdoors for a short while. Outdoors is better than indoors in our book and we shall savor all the sunshine we can until Ol' Man Winter runs us back inside.

At the top of that list I mentioned is something rather exciting. And kinda' big. Rob and I have finally put our first step forward in making one of our biggest dreams come true. About a month ago, we made it official and drove a "for sale" sign into our front yard. We have talked about building a home for years now. But it all really is a big leap of faith right now because we actually have no place to go yet. We just know that somewhere, just somewhere, there is a handful of acres with views of the Blue Ridge Mountains, situated inside the exceptional school district of our neighboring county, and a single level home floor plan waiting on us to turn this dream into a reality. I guess you could say we have jumped, but we haven't landed anywhere yet.

Currently, we live in a two-story home with a full walkout basement. There are steps, and not just a couple, at EVERY door. I have no control over what the terrain or set-up is in the real world for my kiddo with CP, but we do have control over the set-up in our own home. Homes are to be safe and non-restrictive. Steps, in our situation, are far from ideal. Nor are they safe. Living in our current home is my first experience with two-story living and I'm not a fan. The safety gates at both the top and bottom of the staircase prohibits Oia from freely roaming within her own home as she should please. She's restricted. With that said however, I'm thankful she can navigate steps and I still haven't for a second taken for granted the fact that she can. BUT, she can not and will not for a long time be allowed to venture up or down a series of them without an adult beside her. Period. We have caught and saved her on many occasions from what could have been a serious fall backward or forward had Rob or I not been right there. One slip and fall would be one slip and fall too many.

So, yeah, we've leapt, and now we hover in mid-air as we wait for a buyer. It will more than likely take some time. In the meantime, we exchange emails with builders, thumb through floor plan books, search for potential properties (although we think we found one if only it doesn't sell before we are able to buy) and wait patiently. It's exciting but as someone who frantically checks and rechecks whether or not I remembered to shut the safety gates a zillion times a day, it can't happen soon enough.
On to other news. It seems Oia has an understanding of Christmas this time around. I have explained again this year, as we brought out our nativity scene, that Christmas is Jesus' "Happy Day". Such a hard concept to understand when Jesus isn't someone she can actually see but one day it will all come together. For now, Christmas for her is more about "Ho-Ho", Christmas trees, and the bright lights that we admire hanging from Mr. Joe's house across the road. She tells us that "Anta" will knock or use a key to get into our home and that Daddy will let him in. Makes good sense to me.

Which leads me to another item on my list; Speech. Oia is talking more and more. I find that I am not scripting half as much for Oia as I once was. Incredible. It's funny how a once dreaded and tear inducing topic to me is currently one of my most heart-warming subjects. I have a 5 year old who is finally using at least an approximation of words to ask, answer, and engage in basic conversation and a 16 month old who is speaking in 2-3 word phrases already. Each girl's language developement is equally mind-blowing. But it's Oia who has spent all her days shaping my perspective that has allowed me the opportunity to stand in utter awe of what I would otherwise be taking for granted.