Conversation

Communicating with Oia takes some skill and a good dose of interpretation. You can't just ask her any ol' question and expect to get a clear answer. That's not to say she doesn't know the answer or have an opinionated response. Too often though, the words just fail to come from her mouth correctly making many of her words unintelligible. Conversing with questions that require a yes or no response works best for us which means give-and-take conversations are almost non-existent in our home, although we do try. But recently, her expressive language has picked up some speed and is developing into something we had always hoped and knew it would (though the road is still long). Last night's conversation with Daddy is proof that expressive language is indeed still emerging...

Daddy: Hey Oia, tell Daddy where the kitchen rug is.
Oia: (pointing to the back deck door) Out.
Daddy: Why is the rug outside?
Oia: Pee!
Daddy: It's outside because there is pee on it! Who pee'd on the rug?
Oia: (tapping her chest and smiling) Me!

It came and went just like that. A "real" conversation concluded with laughter. Her words, not to mention her honesty, made our hearts smile.

Tiny Change

The tiny cotton candy pink glasses with original lenses no bigger than that of a quarter, had to be custom made to fit Oia's face when she was just 16 weeks old. Over the years, they have been chewed, stratched, stepped on, bent, twisted, broken and fixed, thrown about and even temporarily lost. You name it and they have been wiped clean of it ~ food, drink, rain drops, dried tears... the list is endless. They have been modified on multiple occasions to fit our growing girl. And they have been life changing. From infant, to toddler, to preschooler, and now big Sis ~ these tiny glasses have witnessed so much. But from a different perspective, these glasses have allowed Oia to witness so much. Her dainty face is still so perfect with them on, yet a tad lost without them, as they have just become a special part of her. They have aided in her view of the world and in turn have been imperative to her progress and development. But the time has come. The one and only pair of glasses she has ever worn have become too small. In recent days, they have been replaced with a slightly bigger pair and the cotton candy pink is now more like watermelon. Most who know her haven't noticed the change and that's just the way we like it. The original pair have been neatly tucked away inside her special box of keepsakes. There they will forever reside with her first Onesie, first pair of lenses, first splint and cast, first AFO's. I imagine the day when both girls and I are seated together on a bedroom floor, reminiscing as we dig through each ones little box of treasures. I pray that when Oia discovers the tiny, worn glasses and pulls them out, that she'll have the words by then to look up at me and say "Oh my, Mommy! These were mine? They're so cute and little!" To which I'll smile and reply, "Yes, I know, Honey. And so were you."

Bits and Pieces

Oh, how I miss this space of mine... I hope the feeling is mutual. I wouldn't call this my best post ever but it is my best attempt at letting everyone know we are here, staying afloat, and trying to savor all the crazy details amoung the chaos. Here are some bits and pieces of what's going on around here...

Oia had been sick for all of last week and demanded a lot of monitoring and TLC to make a full recovery. Therapies and school were a no-go all week long. Whatever the illness, it rendered her fatigued and couch ridden with a fever for 3 days. It's taken a number of days after that for her to find her normal again but yesterday she woke up smiling, and in a delightful mood, so we can say life is good again. Now it's Esme's turn to battle the mystery illness. I'm new to having a coughy, raspy, feverish baby and it's a pitiful, worrisome sight. Oia never even got the sniffles as an infant... perhaps we can say that's because she never had a big, preschool sister hovering over her every move. I do hope our tiniest Teaster gets better soon.

Aside from trying to kick the yuckies in this house, we are trying to tackle some um, let's just say undesirable behavior as well ~ from our biggest Miss. We believe most of Oia's outbursts are the result of a mixture of things but regardless of the reasons, it is still not cool with us and we make no excuses. Her frustration can quickly turn into biting, scratching, or hitting someone. If she becomes frustrated with a toy or any other object, she'll launch it and let me tell you, the girl has a dangerous arm. All ill actions land her in time-out immediately. Some days, she never sees a time-out because she's an absolute angel. Other days, it seems she lives there with horns atop her head. And those are the days when it seems like the whole world and everyone in it is standing on my last nerve and leaves me questioning my success as a mother thus far. It's a phase (I hope) but it's still not settling well with me. I could live without this particular parental challenge as we have enough challenges without this one. Maybe the "terrible two's" are finally catching up to us at 4... but Lord, have mercy. It seems to be my daily motto.

We took the month of February off from private ST. I sensed Oia was getting burned out with the same activites each session and her attention span (which already is that of a gnat) was growing shorter and shorter by the session. Quality is always better than quantity in my book so hopefully when we resume ST in March, it will seem fresh and new again. Breaks are nice and we all need them from time to time. Even when you're just 4.

As most of you know, growth is a bittersweet word when your kiddo has CP. Growing bones make for tighter muscles. Tweeks and changes to Oia's orthotics must be made along the way to minimize the compensations she makes in her stance and gait pattern. Her walk is constantly evolving. Oia's left leg has been brace free for (I believe) about 2 years now. She currently wears an SMO and KiddieGAIT on the right only. In recent months, we have been monitoring the inversion of her left foot, due to the tightening of a muscle aside her calf area. At our last appointment with the ortho doctor in January, we all agreed it was time to support the left foot with an SMO. We picked up the new brace today and Oia seems to carry on with it just fine though I imagine it feels a little odd to wear a brace on a foot that has been free for so long. I don't own a crystal ball but I'm willing to bet that lengthening surgery for the left leg will be a topic of discussion at some point in her life but for now, the new SMO should do the trick.

CVI and Visual Clutter

I recently met with the new vision specialist that services Oia's school. She is different than the specialist who assessed Oia last year and thankfully so. This recent meeting has shed some light on things that were going unnoticed by both myself and Oia's teachers. Namely, visual clutter and the behaviors that stem from it.

If you Google the term "visual clutter", you'll get all sorts of articles pertaining to messy desks and unorganized spaces. Refine your search to something pertaining to clutter and visual impairments and you get more than enough on CVI, Cortical Visual Impairment. Those with CVI can have normal eye capacity (healthy eyes) but once the image reaches the brain, it is often difficult to interpret or process correctly, usually due to an interruption of information as the result of a severe injury to the brain or a brain malformation. Focus and concentration are not amoung the easiest of things to do when the brain doesn't play nicely with the eyes. Is this why my child never stops to sit for long, or at all most days, not even to eat? Anyways, I digress...

Oddly, until now, CVI has never been mentioned to Rob or I by neither a neurologist or an ophthalmologist... and remember, Oia has a significant congenital brain malformation. Because the term has never been bounced in our direction, we assumed Oia wasn't effected by it and therefor we've spent no time researching it or living life as though she has it. But after doing the smallest amount of research on CVI since our meeting, it seems like CVI is almost a given when brain injury or malformations are present. The vision specialist noted that many of the behaviors she observed while working with Oia were classic behaviors for kiddos with CVI. For example, Oia gets "lost" before some activities even begin if the activity involves multiple objects/materials. Objects must be sequenced, and introduced one at a time in an uncluttered environment to increase Oia's ability to focus. If her sweet brain is trying to channel and process too much at once, she's over the task before it even gets started.

Another example, the specialist noted that Oia looked at an object on the table in front of her, glanced away from the object, then while looking away, reached and picked up the object with accuracy. For reasons that are unexplained, seeing objects is sometimes easier for CVI folks when not looking directly at them. Think about trying to walk around your house in the dark... ever turn your head slightly and look away from the direction you are trying to head to find that you can see your destination a little better? Perhaps this is the same concept for Oia in the daytime. And is this why she so reluctantly looks at our faces, or makes eye contact when speaking or being spoken to, especially during speech therapy? She will and can look at someone when asked to but quickly chooses to look away... hmmmmm.

I realize a vision specialist is by no means a doctor but her input is definately something to think about. We will just continue with the visual accommodations we have been using and be more mindful of and implement the visual strategies I've found in my searches that are helpful for kids with CVI. I'll be adamant that Oia's teachers are mindful as well. CVI or not, Oia is amoung the visually impaired population and these strategies can't hurt her. The vision specialist will schedule with Oia's teacher once per grading period for 30 minutes to offer suggestions that will hopefully enhance Oia's learning environment by avoiding the visual clutter. One of the comments on Oia's most recent IEP report stated that "Oia is interested in learning new concepts however her vision is a major obstacle to her learning at this time." Reading that sucked and it was the first time vision difficulties have ever been noted on her report. But it is what it is. Visual accommodations are a must for our preschooler now more than ever. Bolder prints, larger fonts, contrasting objects, simple generalizations, minimal "clutter", realistic pictures, and whatever else we need, we'll do... all for a girl who deserves to see and learn the world like anyone else.

Happiness is...

... a lot of things. It's finally having a moment to sit down and reacquaint myself with this blog. It's having a husband that works his hiney off so that I am able to stay home and man the family ship and not miss out on a single moment. Some days though, I'd like to opt for a co-captain er, a nanny. Particularly so at any hour of the night when my high-maintenance, yet oh-so beautiful 6 month old wakes for the 4th, 5th or 6th time. Every night. She never misses a beat. That, my friends, is not happiness. Although she'd beg to differ...


Happiness is scribble that's slowly turning into an "O-i-a". It's not pretty (yet) but who says signatures have to be? For Oia to stabilize her paper with her less dominant hand and correctly grasp a writing utensil with the other, go "around and stop" to form an /O/, then go "up and down" to make an /i/ is purely an accomplishment. The /a/ is most challenging but she'll learn to perfect it soon. With only verbal cues, our girl has put her name to paper and that's just plain awesome.

Happiness is the ever-growing list of new sounds, words, and phrases that come from the mouth of my 4 year old. With each new word or phrase, I feel as though I'm learning more about who my daughter is. Thoughts are turning into words. Words introduce me to my child. And never, ever do I underestimate the power of a single word.

"I need wheeeeee!" So off we go... to the swing to go wheeeeeee! And "I need go pee-pee!" so off we go to sit for a different purpose entirely!

While pointing up and into the dark sky from the living room window, "Mommy, Mmmmmmm". A child whose visual impairment doesn't stand in the way of her view of the moon, she shows us the big light she discovered high in the sky.

When Esme finishes eating, Oia questions "All done ba-ba?" in hopes I'll answer "yes" so she can take the empty bottle and in turn feed her baby. She's a little mommy, no doubt.

In asking for her glasses, "I need eye", as she closes her eyes and points to one of them. It's a remarkable request coming from someone who only ripped them off countless times a day as an infant.


Happiness is a week of warm, 60+ degree weather in the middle of January. Stroller-riding, walking, and wheeeeee-ing in the warm, winter sun is good for the soul.



And happiness is found in the space between Oia and Esme. The space between them is my dream come true. Really. I wanted so badly to have a second daughter long before I became pregnant with Esme. I imagined an older Oia. An Oia who would need a best friend, no matter what. An Oia who had come home from a really awful day at school, maybe feeling lonely. Maybe feeling down about being different. Maybe feeling the need to vent about what hurts, physically or emotionally. Maybe feeling the need to simply share a joke, or a secret ~ with someone other than mom. Maybe feeling overjoyed of a recent achievement, bubbling inside to share it with someone who truly cares. A sister. I knew she needed one. Esme needs Oia too. I really believe these two ladies were made to compliment one another. Many heart to hearts, good cries, laughs, and memories await them. In fact, the laughs have already begun... and that's true happiness.

Fixed

A little over a month or so ago, after Oia's nightly brushing, Rob noticed Oia had a cavity on one of her left bottom molars. The cavity seemed to happen over night but it was quite noticeable and even discolored. We suspected that this cavity could have been the cause of those inconsolable crying spells that occurred a few weeks earlier*. So the following day, I took Oia to her dentist to take a look and she wouldn't allow the dentist to get a good peek. Obviously, the consensus was that the tooth needed fixed, and since this girl does not tolerate dental appointments well, I had to schedule her for admission into UVA for dental work under general anesthesia. That lovely procedure took place yesterday morning.



While under anesthesia, the goal was to x-ray her teeth, clean them, apply sealant, and fix any and all cavities. We went in there knowing that she had one cavity and a congenital defect of another tooth that needed to be checked out. Half way through the procedure however, the dental team called to say that they found more cavities and it would take them longer than expected. So 3 hours, 3 caps, and 6 cavities later, we were finally called back to recovery. One would think after hearing that news that a toothbrush never entered her mouth on a daily basis but I assure you one does... and often times more than once a day. AND, she's been going to the dentist regularly for about a year and half now with no concerns.

But I must say, the risk factors have been stacked against us. Oia has low tone in her mouth, hence the drool. Therefor, she doesn't clear her mouth of food and drink as one should be able to. She often times is unaware when sticky foods are stuck to her teeth. Dentist said that the enamel of Oia's teeth is soft so having both of these factors on board just leaves the door wide open for dental decay. Joy. We found out the hard way.

But even after knowing all of that, I still feel sick about it. Like I'm a horrible mommy kind of sick. Her teeth are our responsibility... and look what happened. Shiny metal caps are NOT supposed to be a part of my child's smile. Can I look on the bright side and say that at least these teeth are her primary set and she'll one day get all new teeth? That thank goodness teeth can be "fixed" and that the caps are in the back of her mouth? It doesn't really make me feel any better but that's what I'll keep telling myself.

So, I guess we eliminate some juices and replace them with waters and just be more mindful of the foods she eats. I refuse to eliminate certain foods from her diet though simply because of sugar content. I'm not that mom. She is four and has a love and curiousity of all food types and I love that about her. I'll just moderate but not eliminate... poor girl. She handled the whole day in true Oia fashion ~ like the trooper she is.

*And a little fyi... none of the cavities effected the roots of her teeth therefor none of them should have caused any pain or ache. Crying spells still a mystery but none have returned.

Reflection and New Year

Happy New Year. Remember me? I'm here, barely. It's been since July that I've slept through the night and I feel and look as though I've aged nearly 10 years since I found out I was pregnant just 14 months ago. I keep telling my husband that a little sand, some sun, and a warm ocean breeze would work wonders on my spirits, not to mention my looks, but he's not buying into it. I'll chalk it up to unconditional love.

Anyways, life has plopped us into 2012. And I'm so glad. 2011 looks really nice in the rear-view mirror. It felt like a rough 365 days. High risk pregnancy, questionable health of our unborn baby, the sudden and tragic passing of my dear Doberman, Oia's surgery and a consuming summer therapy schedule were all bumps in the road. But, silver linings do exist and they were always present when I remembered to just stop and look for them. Life is good like that.


The toughest decision we made in 2011 was to have Oia undergo lengthening surgery while I was nearly 8 months pregnant. To date, it's been the best decision we've ever made for her. And trust me, we've made a lot. Cutting her hamstring and Achilles tendon did more than just release the tone in her leg... it provided our girl the freedom to be, to bloom with some ease. CP still does and always will have a mark on our girl but moving around post-surgery without having to fight muscles does wonders for a developing 4 year old. Oia's tolerance for the surgery, the recovery, and for the summer of subsequent therapy simply amazed me.


The absolute highlight of 2011 happened on the morning of July 20th as we became parents all over again. My pregnancy was riddled with fear, anxiety, and tears of all kinds. But in the end, our sweet baby Esme is proof that prayers can be answered. Born with a heart as unique as she... the most beautiful, alert, brown-eyed baby we've ever seen. To think she's all mine, all ours ~ it just baffles me.


There have been ups and downs over the last 12 months but no life would be complete without either. I am here, able to reflect, able to look back. Looking back is only possible if you've been fortunate enough to make it through. And that I have. With all the strength and wisdom another passed year provides, I move on a better person and into 2012 as the blessed mommy of two extraordinary girls and as the lucky wife to a man I don't deserve. 2012 will bring great things to this party of 4. I will make sure of it.




Photos by Kari Davis Photography, October 2011