O is for Oia

I struggle more often than I care to admit with the fact that my 3 year old has a significant expressive language delay, a delay equivalent of someone a third her age. Some days it never gets me down (okay, I'm lying) but too often it's on my mind and the older she gets the heavier it feels. Being around a toddler Oia's age who talks in sentences, tells complete stories, and spouts off random silly thoughts and questions leaves my heart a little achy. Aren't all parents supposed to be able to die laughing because of the darndest thing their child just said? I still remain hopeful for that day.

Despite the language delay, I never let myself underestimate Oia's receptive language and the potential she harbors. It could be an easy thing to do but I don't dare go there. Oia won't let me. Yesterday is an example of that.

After PT, we ran an errand to a local print shop to print a few photos. Oia was in her stroller as we waited at the counter for our order to print. The view from a stroller in front of a tall counter, as one can image, is less than appealing. Oia was ready to go as her patience were nearing the end. As I'm standing at the counter trying to be patient myself, I hear Oia below me saying her name repeatedly and with conviction, each name getting louder than the last. She grabs my attention with "Oia, Oia, Oiiaaaaa..." and as I look down I realize that all the while she is not only saying her name but frantically pointing to a letter O that she spotted within the sign that hung level to her sweet little face on the side of the checkout counter.

"Yes, Oia, that is an O for Oia! You do have an O in your name!"

And so those are the rare, beautiful moments I live for... a mere 3 seconds where Oia shows me a bit more of who she is and what she knows. I just love this girl, with or without the ability to speak many words, I simply love her.

In Defense of a Thoughtless Comment

I was recently on Facebook when a friend messaged me. This friend was near and dear to me in college, but as life often does, it took ahold of us and pulled us in entirely different directions. Sadly, at this point in our lives, our only communication is via Facebook. We began our chat and one of the first things she asked me was if I was still teaching or staying at home. Anyone who really knows me, knows that I stay home now and why so the question made me a little curious. Clearly, she did not know a thing about Oia (though I'm sure I once mentioned our situation in an email long ago).

Anyways, I told her I spend my days at home caring for Oia and have been able to do so since shortly after her diagnosis and her reply was "I'm sorry". I feel like that is the typical, safe thing to say when one doesn't know what else to offer. I hate hearing "I'm sorry". I dove in and asked her if she even knew about Oia and she apologized for not knowing. That's when I told her Oia has cerebral palsy. As I've heard a thousand times before, she said something to the effect of how God knew we would be the perfect parents for this girl and how lucky she was to have us but I quickly assured her that Rob and I were the lucky ones in this situation.


That must have been all of the topic she could handle because what she messaged next shocked me.... and kinda hurt at the same time.

Completely changing the subject, she says "On to a more positive note...." at which time she turned the topic into something insignificant regarding music.

No curious questions. No inquires about progress, Oia's current health, etc. No nothing. Just changed the subject, and in doing so left me feeling no colder then than I do on this 20 degree winter day in Virginia.

I'm just like any other mom. I want to talk about my kid too. Although Oia's different by medical definition, she is something worth talking about. She is not a taboo subject that needs changing. She is the most "positive note" I have to share with anyone. Who else can speak very little yet has so eloquently communicated and taught me some of the most beautiful lessons I'll ever learn?

There's no need to feel sorry. There's no need to change the subject. Next time, have a heart, show some compassion, and ask about my girl. She works too hard to keep her triumphs a secret. You'd be amazed and you just might even leave our conversation on a more "positive note".

Don't Be Fooled

A while back, Oia's school asked if I would be willing to sign a consent form to have my daughter evaluated by the their vision specialist. (Not sure if "vision specialist" is the correct term but I'm going with it.) I never deny such things so I signed. I figure, the more supportive hands and watchful eyes on my daughter at this young, pliable age, the better.

Yesterday this specialist phoned to set up a mutual time for us to meet. She stated she had some questions she'd like me to answer regarding Oia's vision. We met this morning after I walked Oia to her class. I learned at this time she had already been working with Oia for 3 weeks. I would've liked to have known that before now but, whatever. I answered a few typical questions like How would you describe your daughter? Does she wear her glasses all the time? Is she on any medications? How well does her vision serve her in new places? Is she sensitive to light? How does she explore new objects; orally, tactically, visually, etc? and so on and so forth.

After some discussion, the specialist shared with me that according to her evaluations, Oia sees quite well but I've always believed this. As far as all can tell, her vision does not interfere with her level of function within her environment. To read of her vision history and diagnosis, it's really quite amazing. When asked by the specialist, Oia correctly pointed to near and far objects. Distance objects were seen looking out a window and near objects were tiny thumbnail sized pictures in print. She appears to see colors appropriately, correctly identifying red, yellow, blue and green. Her depth perception is on target. She does not over or under reach for objects and she lifts her little legs to the correct height when navigating steps. Don't be fooled by those little, thick glasses... this girl can see. If there is ever a stumble, it's due to physical challenges, not vision.

In addition to PT, OT and ST during school hours, Oia will also spend some time along side this vision specialist for the remainder of the year. As I understand, the two of them will do tasks together that require great visual focus (threading beads, etc). As Oia grows as a learner, she may require more needs from a vision specialists (special texts, larger fonts, etc) but for now this girl is holding her own.

My only request to all these therapists and specialist who work with my child during school hours... please work with our girl IN the classroom and keep this girl among her peers if and when you can. Getting pulled out of the classroom for one therapy session or another means she is missing out on valuable, educational activities that go on in the classroom. Our social butterfly would appreciate it very much.

Post Botox: One Week

Oia showed no indication of soreness or pain after the two injections of Botox to her right calf. She carried on as I hoped she would. Doctor told us that changes would begin to be noticeable after a weeks time so we were shocked to notice a huge change in her tone just 24 hours later. To say that her foot was flat, meaning all the way down to the floor would be a stretch, but it was pretty darn close. In fact, while in motion, Oia's right heel is now closer to the ground than her left heel. The relax in her right calf seems nearly miraculous.



Since the injections, it's been safe to allow Oia some time sans AFO. She is no longer walking so high on her right toes which means her ankle is no longer as susceptible to injury. Preventing an ankle injury has always been a constant worry.

So, are we pleased with post-Botox results? Absolutely. And if Oia could talk, I'm sure she'd tell you that too. Too bad the relief is only temporary.

First Botox

After an awesome hour of PT this morning, Oia received her first Botox injections which consisted of two shots in her right calf muscles. It was certainly quick, but not necessarily painless. Within the big picture, although this particular use of Botox is not yet FDA approved, it's common and safe and proven temporarily effective in varying degrees for most CP kiddos. However, to say that I wasn't out of my mind nervous about actually signing my name on the dotted line to permit such a powerful toxin to be injected into my baby would be a absolute lie. I literally prayed while signing.


Oia did as well as I thought she would. She cried yet was so tolerant. After some tears and two cute penguin band aides later, we were on our way home. Once home, Oia took a long lap and woke happy and playful and seemed free of discomfort or pain at the injection sites. We'll see what tomorrow brings.

We've been told it could likely take up to a week to notice any relax in her tone. So, now we wait... and wait... and hope.

CIT Again?

It's been a little over a year now since Oia's last round of CIT. It was a modified version since she was under 3 years of age. I swore then that we'd do it again one year later but clearly that hasn't happened. Casting, followed by ankle injury/recovery period, and the constant, watchful eye over her spastic and tight right leg have really taken priority in the last couple of months. Unfortunately, we only have the fight within us to pick one battle at a time. However, even though the tightness of her leg is still a major issue, she is back to 100% and so the idea of a third round of CIT has crept back into my mind. Round 3.... can we do it? I think we have to.

Yes, Little Miss uses her right arm and hand more now than she ever has before but we can't stop here. She is still so young and this is when crucial gains can still be made. She has so much potential and spontaneous use of her right hand that I feel we wouldn't be doing her justice to settle now with her current functional level.


Since Oia is 3 now, she'll get the full-on, real deal, CIT "camp" if we move forward with this. Camp is 4 hours of OT a day for 5 days a week for a total of 15 days. Previous CIT's have been modified versions where the therapeutic responsibility rested upon Rob or I. We only visited an OT for one hour, twice a week and it was for a total of 30 days. It was exhausting but still very much worth every day of it.


It's a lot to think about but I'm mentally preparing myself to tackle this before winter is over. We have insurance inquiries and other minor things to consider before we get the ball rolling but my heart tells me we need to do this.

I'll leave you with a video of my little helper using her right arm, no prompting. She absolutely loves to help me out in the kitchen and it melts me to see her do something for the first time because she has observed me doing it before; like throwing food scraps in the trash. This particular day, she was done with snack and decided to clean up all by herself (although I would have saved them for later but that's okay). She even put her dirty bowl in the sink... how wonderful is that?


And FYI, Oia's Botox appointment was scheduled for today but since our provider decided to dilly dally around with the approval, we had to cancel and reschedule for November 30th. Stay tuned...


Photos are recent captures of Righty at work. I still do a happy dance every time.

Happiness is...

turning around to check on your child in the backseat to notice that she is voluntarily eating a cheese stick with her right hand.