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

Wednesday, October 31, 2012

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.

Thursday, October 11, 2012

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.

Wednesday, October 3, 2012

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.