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.

Message of Hope

About two years ago, I voluntarily submitted material for a video project in the making. To my excitement, I received word via email today that the project is finally complete and now public. It requires no further explanation...

The Birthday Party

When I began thinking about planning Oia's 5th birthday party and picking a theme, if any, the only thing that repeatedly came to mind was "bright and happy". "Bold" even. Oia doesn't live and die for any certain movie/cartoon character, or Barbies, princesses, etc ~ you know, most kids love something. But honestly, she could just play with her favorite babydoll all day long or better yet, shadow me every waking moment as my little not-so helpful helper. No girlie themed party would suit Oia's personality but all things bright, happy, and fun would. She's a girl who lives her life in bold, always seeking fun, so with my head full of colorful ideas, I went with it...

Think all shades of the rainbow. Bright like tie-dye. That's Oia.

Her party was Saturday. Unfortunately, the rain forced our originally planned outdoor party inside. The outdoor activies we had planned for the kiddos could not be done in the house with me as a conscious participant so we had no choice but to treat our guests to nothing but the best ~ our lovely garage. The last minute Plan B had me a little flustered at first but we pulled it off anyways.

As the rain began to fall that morning, I sent Rob and Oia out for the pick-up of cakes and balloons and while they were out, my sister and I quickly worked our magic on transforming the garage into something a bit more party friendly. We had a kid sized picnic table covered with white butcher paper where kids could sit and create with markers or paint. We layered the table with multiple sheets of paper so once one sheet was full, we could tear it off and start anew. Simple. Even the babies liked it...

Another activity was along one side of the garage. We hung a white king bedsheet that served as a canvas for kids to spray paint with water bottles. Fill a spray bottle with part water, part tempera paint, then allow kids to spray or squirt away. Perfect for tiny Picasso's in the making.

For the water lovers, we filled one of our kiddie pools with shallow water. Then we allowed the kids to each have a frozen water balloon (or 2 or 3!). The object ~ tear open the balloon and melt the ice away from the treasure that was frozen inside. Kids got to melt the ice by rolling it in the water, by blowing on it, or by rubbing it in their hands. Some even thought to crack the ice on the ground to get to the treasure from the middle a little faster. It definately kept them busy for a while.

But the party's main event was T-shirt tie-dying! Remember I said bright and happy, right? I was so excited to do this with the kids. It was on my summer's bucket list for Oia and I to do together but in all reality, tie-dying is for multiple shirts at once so what better time than at a kid's party. I provided all the materials necessary for each kid to dye their own shirt. I love the symbolism; 10 kids, all as uniquely different and special as the shirts they created that day. Everyone did a great job, listened and followed directions, and very little mess was made.

First round of kids dampening their white shirts in warm water:

Shirts soaked in soda ash, rolled, rubber banded, and ready for dye:

Elena carefully planning her masterpiece:

Natalie getting a little help from her mom:

Once the dye was applied, the shirts were to be left undisturbed for at least 12 hours before rinsing and washing. We sealed the kids shirts in a plastic bag for safe travels home and provided them with take home directions. Since the party, we've seen some of the finished products, and they look awesome!

Cake and ice cream was last for which we headed inside for. Oia felt special, I could tell, during the singing of Happy Birthday. She stood calm for the song, as if soaking it all in. Her smiles were infectious and once the singing of Happy Birthday was complete, Oia voiced the sweetest "Happy Day, Oia" to herself. And she blew out all five of her candles, one by one! That was definately the icing on my cake!

Note the colorful layered cake!

Oia's party was a memorable time for our family. I can't help but feel so blessed not only for the most amazing five year old we have the priveledge of calling our own, but also for the supportive and loving individuals who helped us celebrate the occassion (some present and some here in spirit). I hope they all enjoyed themselves as much as we did. We've filed the day under one of the most memorable birthday's yet and we can't wait to do it all over again next year!

FIVE

At some point, clearly when I wasn't looking, my firstborn was whisked away and replaced with such a beautiful young girl that today I fail to adequately describe. My poor attempts at painting her picture with words, words that do her no justice, only muddy the vibrant and unique soul she is still becoming. She is more than words. More than I am capable of explaining. More than I can yet to comprehend. She's wonderous and mighty. And today, she is five. One whole hand old.

Five is a big deal. Five years with Oia has taken us here, there, and everywhere. Literally and emotionally. But still, not one day has slipped by us in the last five years that we haven't celebrated her or something of her. Each and every day she has worked hard to overcome what most never have to think of. Her victories are hard earned and tackled with grace. Her daily slivers of progress continue to poke through and inspire us. Her progress makes us laugh and cry all at the same time and how wonderful that feels. She's come a long way from that quiet baby who once made me question one of the professionals in our lives, "when will she ever reach up to let me know she wants held?" I barely remember that baby. Seems so long ago.

Oia, I've said it before but I must say it again, no one has or ever will deliver so eloquently the lessons you have taught us thus far. The beauty and joy you bring to our life is more than we deserve and the pride we experience while you walk us through this life is absolutely overwhelming. You are the third in this family of four, wedged so tightly in the middle that should you ever venture out of your independent (ehem, hard-headed) ways, then I guarantee you'll find one of us right beside you. Please reach out for a hand that I promise will be there should you ever need it. We know you'll do the same. Until then, carry on and just be you ~ because you are something else. Thank you for the sweetest of five, colorful, fabulous years. We love, love, love you unconditionally from the very bottom of our hearts. Happy Day, Beautiful!

Preschool Year #3

Summer break is officially over and Oia has begun another year of preschool, her third and final year. Technically, this year could have been the "big one", her beginning of Kindergarten. But it is not. She's young, just days away from turning 5. Developmental delays aside, age is reason enough for me to allow her one more year of preschool. One more year of absorbing. One more year of learning peer interaction. One more year of overall development ~ in the safe and familiar environment of her self-contained preschool class. She needs it. I'm calling it our year of cushion. My expectations are high.

This year will prove to be eventful, I am sure. Especially with full-on potty training in the picture. Her day begins with an 8am drop-off (Esme and I walk her into her room each morning). We return around 3 for pick-up, nearly an hour and a half longer than her previous school days because this year I have opted to make her stay for nap/rest time. Previously, I did not. I would pick her up just as the class was winding down for nap and then she would, under great protest, nap at home. Bed is better than mat and dirty school floor in my book. However, now that naps are no longer a part of her day because she simply has refused them shortly after Esme entered the picture, I feel there must be some time allotted for her to simply slow down, stay in one place, be quiet, and REST. Only the structure of school can teach this to her, she refuses for me. This rather simple idea is far from simple for Oia and those who know her well understand this. Learning to rest her mind and body will be a valuable lesson for her and maybe one of the hardest lessons she encounters this year. She has no settings; she is simply on or off. It's a blessing in disguise for an individual originally diagnosed as a spastic quadriplegic. But rest does a body good.

Also, her preschool class has been transferred into another elementary school. The school is huge, to say the least, with hundreds of students. This transfer into a different building brings a different speech therapist. It's the one therapy we are so intently focused on right now, and fiercely adamant that her instruction be specific to her apraxic needs. The adjustment to and the unknowns of a new therapist rocks my boat slightly. It's only day two and I've already requested to meet this therapist, observe a session, and asked that she watch the recorded sessions between Nancy Kaufman and Oia from our week of camp. And at my request, our private ST has informed the new ST of current goals and summer progress post camp at KCC. At this point, I hold no patience for dilly-dallying around when it comes to her language development. We all need to be on the same page.

And so another school year means more of those dreaded IEP meetings, more questioning, more watching, more hoping for perfect situations. I dream of nothing less. It means more progress, more growth, more of knowing and learning about our girl, and more celebrating. We will be vocal and wide-eyed all year long, all for the girl who is so sweetly naive to the long road that precedes her.

Tackle it, Oia. Show 'em what you're made of. May your third and final year of preschool be the best yet. We are forever right behind you. And proud of you no matter what.