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.

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.

More on Oia

On Election day, we took Oia to her standard 6 month ophthalmology appointment in Northern Va. This was the "every other" appointment where her eyes did not need dilation. These kind are much quicker appointments. Her eyes seem to be holding out at status quo which is not a bad place to be. But, we are to be patching still in one form or another; via eye patch or Atropine drop. I suppose you could slap us with a bad parenting award because to be very honest, we haven't dropped her eyes in a looooong time. Too long. We have our valid reasons but we really need to jump on this again. So we will... Sorry sweet Oia, just following Dr. P's orders.

A few posts back, I mentioned Oia was seen by a Developmental Behavioral Pediatrician. Our area of concern was Oia's lack of focus. It seems to be a common thread all across the board; school, therapies, and home. At the appointment, it was suggested we try putting Oia on a short acting attention med which would hopefully be just the intervention she needs to improve her focus during school hours. Our only hurdle in trying the med was to get Oia's neurologist to approve the script as the particular med we were advised is known to lower the seizure threshold in patients at high risk for them already. Oia is that patient. Long story short, script was cleared by neuro, and the tiny pills now sit inside our kitchen cabinet. Unopened. And out of sight. The idea to medicate her right now just doesn't feel right.

I know of many people who have children that seize on a regular basis. It's often something out of their control. Not really sure how these parents get through it. So to think that one morning, I could break open one of those said pills, sprinkle it on Oia's first bite of her beloved yogurt, feed it to her, because I chose to, then potentially soon after witness one of my worst nightmares unfold, well... it just seems like the absolute wrong direction to take. That's not to say the med would, but it could cause seizures, and I'm not one who enjoys playing with fire. So, Rob and I have come to the consensus that we should back up a bit and start with an overall different approach in the area of integrative/alternative medicines. Think vitamins, supplements, dietary changes, etc. Maybe as a child who is not neurotypical, her makeup is missing something essential hence her inability to concentrate. We don't know, but it's definitely something to think about. We are currently searching for such resources/doctors in our area who specialize in integrative meds to fully guide us and educate us about it. It may or may not work. But bottom line, it's harmless. Seems like a smarter and safer place to begin. Oia deserves that. Those other little pills can just wait.

In some lighter news, this girl is still a fabulous handful of will, spunk, onery, and sheer fun. No one frustrates me quite like she can and no one makes me laugh quite like she does either. Her love for Esme is fierce. Her expressive language is still developing beautifully. Potty training is nearly behind us. And her IEP report last week made us very, very proud. Allowing her one more year of preschool before venturing the big, bad Kindergarten was absolutely the right decision. Afterall, you just can't rush perfection.

Halloween at UVa

There are only a handful of holiday traditions that this tiny party of four cling to each year. Attending Halloween on the Lawn at UVa is one of them, and probably one of our very favorites. This year marked our fourth Halloween at UVa; our very first one was just 2 months after Oia learned to walk at the age of two. Attending such a big event then with our wobbly daughter who was finally on foot was a celebration in many ways. I relive that memory every Halloween and will forever. But this year, make that daughters on foot.

Dressing in costume wasn't what Oia considered to be a good idea but with some serious coaxing, she gave in. Thank goodness, because she made a lovely Tinkerbell even though she demanded to remain wingless for most of the night. Adorable, nonetheless. She roamed, observed costumes, found delight in walking up and down small hills in her sparkly shoes, nibbled on M&M's and smiled a whole lot.

And our littlest was quite the attention-getter. If we heard "That's the cutest outfit ever!" once, then I promise you, we heard it 100 times. The awwww's were endless. I can't even begin to tell you how many people beelined in our direction to stop and snap a picture of our knee-high garden gnome, who aimlessly wandered and weaved in and around the festive chaos as if the place was truly her own. Scooping her up every now and then to smooch her sweet gnome cheeks to then put her back down again to wander on her way was pure and utter happiness. For me.

Both of our girls shiver in fear at just the sight of the Chic-fil-A cow who frequents the mall so one might assume that an occasion like Halloween would be purely terrifying for them. It's always interesting for us to see their reactions but surprisingly, Oia made friends with Bee and Esme tolerated the Chickens, although you should note that she kept one foot safely pointed towards her emergency escape. You know, just in case...

The evening was closing in and despite the layers, the girls were becoming chilled and hungry. Even Tinkerbell and garden gnomes must eat dinner on time. So home we headed... It was indeed another happy Halloween and yet another day, among many, to be thankful for.

Appointments and Blogoversary

What a week it's been... appointment central. I'll start with our first appointment on Monday, which was just a standard follow-up with Oia's ortho doc. There were no concerns heading into our appointment and the visit with Dr. R was brief. Simply put, he was pleased with Oia's current range and mobility. Very pleased. We left with the orders to "wean her out of these braces" by only making her wear them during school hours. I wasn't sure I'd ever hear those words and I promise you that I never expected to hear them this soon if I ever did. I passively questioned our doctor's sanity by asking him if he was certain this idea wouldn't come back to bite us in the backside later and he said we just need to continue stretching and keep a close eye on things. Braces for school only... yeah, I'm still trying to process that one. Unbelievable really, and thankful too. We head back for another follow-up in 6 months.

The following day, we took Oia to visit with a Developmental Behavioral Pediatrician. Unlike the ortho appointment, we did have concerns for this one. A lot actually, all pertaining to Oia's attention span, or lack thereof. Here's the deal. Oia's brain is abnormally formed with a cleft which leads to an irregular EEG, to say the least, and the cause of her CP. We've known this since Oia was 7 months old. As a result, Oia's brain does not take in, process, and file information as a typically developed brain can. This irregularity causes our girl to struggle to focus and maintain attention in structured settings, among other things. The lack of attention is one of three areas negatively affecting her academic performance. Her cognition and language deficits complicate the situation. While none of this is new news to either Rob or I, we have still come to the conclusion, with our doctor's input, that medical intervention may be key to helping Oia overcome her attention deficits. It seems like an obvious and easy solution but the decision to medicate my child just so she can simply maintain in a structured environment, like school, is scary for many reasons. But like all else we have ever done with Oia, we weigh the risks and ask ourselves if this is worth a try. Oia will have a long and stressful school career ahead of her if we don't find a way to help her with these attention issues now.

So, we have a plan. If Oia's Neurologist clears us for the trial of a short acting stimulant (Adderall), then we give it try. The script must be cleared by our neuro first as Adderall has been known to lower the threshold for seizures in patients who are at high risk for them. My child falls under that high risk category. The idea to move forward, should we get a thumbs up from neurology, scares the ever-living hell out of me. If we get a thumbs down from neurology, we revisit with our developmental ped to discuss a Plan B. Right now we are currently in a holding pattern, hoping for a thumbs up and praying to God that whatever we do is to Oia's benefit. Emotionally, this one is a bit of a struggle for me.

And finally, today was Oia's referral appointment with Audiology. I mentioned that the hearing test she was given during her 5 year old check-up with our regular pediatrician suggested a referral. I suspected poor conditions the day of the test but thought it best to attend today's appointment just to be sure. And I was right... a few speakers and a couple obnoxious singing and dancing battery operated animals tucked in the corners of a dark examination room confirmed that Oia can hear just fine. She didn't miss a beat and was ready to get the heck out of there. So was I.

And of less importance, this week marked year three of Unexpected Lessons. I've hit "publish" 235 times since then. To date, my dashboard claims that I have had 99,964 visits, nearly 2,000 comments, and at least 98 regular followers. I have met some fabulous families through this tiny slice of cyber space and felt supported many times by even the smallest of comments. The emotional road one travels down after life post diagnosis is one not for the faint of heart. The road is hilly and full of speedbumps and potholes and absent of any road signs. But I'm a different mom today, much different than the one I was 3 and 4 years ago. I have a great teacher. She has delivered lessons that have thickened me. And softened me too. And transformed me completely. I like the person she has made me to be and thankful to call her my first Daughter. There's only one Oia Teaster... and I hope I'm around these bloggy parts for a long time to come because I know our family's story has only just begun. Good things are waiting and there's lots more to learn. To all who have ever dropped by for a second, third, or hundredth time, to read my mumble, I thank you.

Not That Girl

Our house has been a sick one lately. Oia is back to her old self now but last week she did miss a day of school and a PT session. Rob worked from home the day Oia was most sick to help out with both of our sick girls (and to allow me to stick with Oia's afternoon IEP meeting). Once I returned home from the meeting, Rob needed a quiet house to attend to a conference call so the girls and I headed out across the street where some neighbor kids were playing. Both girls happily rode in the wagon.

As we became part of the neighborhood gang, Oia wanted out. Of course. I love that about her, always willing to be a part of the action. About 6 kids, ranging in age from about 3 yrs to 1st grade, ran around the dead end street, happy to be out of school and/or out of the house. Oia was just happy to be feeling better.

The first grader, C, who we have ran into occasionally says to me "Hey, I see her in the cafeteria all the time." I act surprised/excited, and turn to Oia to join her in the conversation.

"Oia, C sees you in the cafeteria at school. Do you ever see him?" She smiles and reaches for his hand. I guess she must.

C holds her hand for a while until Oia directs him to pull the wagon that Esme is still riding in. He follows Oia's orders as I step aside to allow for the new driver. Suddenly, everyone wanted to pull the wagon and suddenly it became a lesson in taking turns. Lucky Esme. Then, C randomly shared out loud the fact that Oia always wears glasses, to which I reply, "You are so right! And so does J (who was an adult standing near us) and guess what? I do too!" "Oh" he said, as if he suddenly realized that wearing glasses wasn't so out of the norm after all.

Kids continue to play around and few moments later, as C has control of the wagon again, he felt the importance to inform me that Oia was drooling. I just shrugged my shoulders, "It's okay, that happens". And God love Oia... she acts unfazed by all of the commentary involving her.

Then, still amoung the swarm of busy kids, I hear C as he points to Oia and begins to exclaim to his buddy, "Hey, that girl... " and he never got to finish what he started out to say. I intercepted. "Wa-wa-waaait a minute... she has a name! Do you not know it or did you just forget what it is?"

C pauses. "Ummmmm..."

"If you think you forgot her name, then you should ask her what it is." He then asked, and Oia answered.

"That's right. Her name is Oia so from here on out that is what you will call her, okay?"

C nods. Our conversation ended. He ran off to play some more. Oia veered in attempt to play with other friends. And I never got to hear what C was going to say about that girl, the one who happens to be mine.

Perhaps a compliment to Oia was on the tip of C's tongue and I ruined it. Maybe he was just going to tell his buddy that he sees Oia in the cafeteria, just like he told me. I can only hope it was something nice. But the term, that girl, sounds isolating. Probably feels that way too. Who wants to be that girl or that boy in a crowd of peers? No one, I assure you, especially when blending in as a typical and equal part of the whole is often a challenge. The situation warranted as a teachable moment in my book, because even though Oia may not fully understand or be fazed by such things now, one day she will be. We all deserve to be known by name, not by differences. We include and if we don't know one by name, we introduce. We gave our child a name, and for all who interact with her, she shall be known by that name, not as "that girl". An over-protective momma bear? I make no apologies. It's just that simple.

Sharing Some Good

All is good in the Teaster house. Allow me to elaborate and share some goodness because I have enough to pass around.

I'll start with the star of this blog, Miss Oia. Her 5 year old well visit revealed that she has grown about 3.5 inches since the first of the year. Growth is good but as we all know, growth spurts and spasticity don't play well together. Thankfully though, we have not noticed any significant change in her range or flexibility as such growth spurts have always rocked the boat in the past. Perhaps the ortho doc will state differently after our appointment with him next month but I feel pretty good about it all. The well visit also revealed that Oia needs to be referred to audiology for a more formal hearing assessment. Nurse tried to give Oia a hearing test in the peds office, with chatty Esme in the room and ruckus in the hall, and the results suggested a referral. Poor conditions for a hearing test if you ask me. I'm not too worried about it though. We'll just wait and see what the results conclude after her October 2nd appointment and go from there.

And speaking of chatty... beautiful, beautiful words continue to come from Oia. Daily progress. Progress that has been 5 long years in the making but the Apraxic door inside her little head is slowly cracking open. I attribute every bit of where we are today to our 4 days with Nancy at the KCC. She, with the master key, unlocked the heavy, jammed shut door and has made all the difference. Carrying over our learned strategies at home and during private speech sessions has been the umph necessary to further push open that damn door. Spontaneous words are slipping out. Simple commands and even questions are emerging. Some where's, what's, and why's. Conversing with an adult who doesn't know her is not only possible, it's happening. If only even a tiny bit.

On the OT front, all is moving right along there too. We are about 2+ months into the private sessions and I am not only pleased with the goals we created and activities that our OT is bringing to the table but equally pleased with the attentiveness and progress coming from Oia. Fine motor, bilateral activities for a visually impaired girl with upper extremity weaknesses has all the potential in the world to frustrate to no end, to say the least. The good news is, she actually likes it. Loves to have control of her scissors. Loves to draw lines and circles. Loves to fiddle with a hard-to-open package or container. Feels proud to write her name, even though her little name fills the entire sheet and she signs like a doctor. Her OT skills are far from Kindergarten ready, but like all else, she continues to blaze her own curve and that's alright by me.

And let's not forget, the star of the show has a little sister. Our Esme. With all that we have learned, witnessed, and been through with Oia, we are savoring a greater appreciation for the natural development of a neurotypical child. Esme is the epitome of "time flies". I hated that phrase when Oia was an infant/toddler and I'm still not the biggest fan of it but fact of the matter is that now I get it. When you have a typically developing child, yes, time does fly. One day Esme is crawling, the next she is standing. Then cruising and walking. And talking. Today she walks more than she crawls, roams room to room, often alone, and on foot. And climbing in and out of toys, on and off of chairs, like it's her mission. Not a soul showed her how to move her legs, or arms, or body to tackle such feats. Not a soul manipulated her legs to form those shakey steps. It came organically and almost overnight. Her brain and body paired together and just instinctively did it. Dare I say we are experiencing a new dimension of parenting that we missed out on the first time. Rob said to me over dinner earlier this week, "I guess I just didn't fully understand and appreciate what this scenario would look like!" This scenario means two mobile children, both who require constant monitoring. Both who express wants and needs. Both, who together, have given busy a whole new meaning in this house. But no matter how crazy it may be sometimes, I'd be a fool not to feel blessed by this chaos and the two cuties who create it. It's all good.