Tulip Farm

I'm a sucker for flowers. Stargazers and Tulips are my weakness. Plop me in the middle of a sea of blooming tulips and I'm in Heaven. Today's visit to EcoTulip Farm was the perfect way to spend such a gorgeous, spring Sunday as a family. We took tons of pictures, picked our own bucket of tulips, ate a picnic lunch, and soaked in all the charm that such a tiny tulip farm has to offer. Enjoy our day in pictures...

"Just living is not enough... One must have sunshine, freedom, and a little flower." ~Hans Christian Andersen

Disney Live!

I know there are countless of parents out there who wished their kiddo didn't watch so much TV. But, I admit. I wish my child would simply slow down and sit down long enough to watch a cartoon in its entirety. Actually, if she just slowed for 10 minutes I'd be happy (although for a child with CP, I realize what a blessing this is). But NEVER has my sweet Oia done such a thing. So, when I suggested to Rob that we should take Oia to a local performance of Disney Live! Three Classic Fairy Tales, I felt a little out of my mind as such shows are generally over an hour long.

It's one of those you-never-know-until-you-try kind of things and Rob was game. But first, I knew our seats had to be good and close since its safe to assume that Oia's visual impairments play a role in her attention span, or lack of. I called the venue prior to ordering tickets. I explained Oia's needs and explained that the proximity of our seats to the stage could determine the quality of Oia's experience. We were offered 8th row on the floor. Quite close. I was hopeful this would be the perfect ticket (no pun intended) for a quiet and still, fully engaged, mesmerized Oia. And it was. For all of about 5 minutes.

Despite talking up the show in the days prior, she wasn't that into it. She clapped a couple of times and jumped with a few loud noises but quickly lost interest. Socializing with the faces that sat around us and climbing the steps of the arena were her only interest. I wrestled to keep her in my lap while Rob held Esme ~ who by the way ~ was the quiet, fully engaged, mesmerized one. We left at intermission. Oia was over it and the tighter I squeezed to contain her busy little body, the more frustrated she became. What do ya' do?

The only picture I got of the girls decked out in their princess shirts was this one after we got back to the car (sigh). We tried. Looks like we won't be heading to Disneyworld anytime soon...

Happiness is...

There's always something to blog about when the title reads Happiness is... In no particular order:

Happiness is the view from my new double jogger. Feels so good to finally be able to dust off the running shoes and work up a good sweat again. I've so missed it. Oia weighs somewhere in the ballpark of 35 lbs, and Esme is close to 20. Lord knows how much the jogger weighs but no matter how you slice it, the workout is a good one. And I love it. Despite my efforts to trudge along as fast as I possibly can, my sweet Oia says Run, Mommy, ruuuun! She's brutal I tell ya, and quite possibly the best personal trainer I've ever had.

And speaking of the view from my double jogger ~ Happiness is simply saying "my girls". Plural. Two. I have TWO girls. Holy cow, when did that happen? Eight months later and I'm still trying to soak it all in. Rob and I are so fortunate. We have a blonde-haired, blue-eyed, petite Daddy's girl and a red-haired, brown-eyed, nubby Momma's girl. Both seem so different from one another yet they absolutely adore each other. Esme only laughs for Oia. And Oia is still introducing Esme to those who already met her 8 months ago. Despite what any medical textbook says about either, they are so undoubtedly perfect. And perfect for us. Already two peas in a pod. I think I'm in trouble.

And lastly, happiness is witnessing Oia tackle and master new terrain. Actually, happiness is an understatement on that one. Take this tiny hill:

It's the hill on our side yard. Perhaps our front steps give the slope some perspective. It's fairly small yet relatively steep. Perfect for pint-sized ones to sled down. It's nothing too extreme for most yet it's always been too dangerous for Oia to navigate on foot independently. Oia has been a walker now for a little over 2 years but never has she been able to navigate this slope. Always an instant tumble and for a girl with delayed protective reflexes, a dangerous one. But last week, she decided to give the hill another try, her first try since last Fall. I was hesitant but forced myself a step back. Success. She made it to the bottom, with control, then giggled and turned around to head back up and do it again. Her face was smothered in sheer pride. After some obnoxious cheering, I ran inside to grab my phone for this quick video...



Happiness indeed!

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.