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

Wednesday, December 22, 2010

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.

Wednesday, December 15, 2010

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".

Thursday, December 9, 2010

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.

Tuesday, December 7, 2010

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.

Tuesday, November 30, 2010

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.

Tuesday, November 23, 2010

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.

Tuesday, November 16, 2010

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.

Thursday, November 11, 2010

Can She Run?

Oia's routine neurology appointment yesterday afternoon went smoothly. Dr. T covered the basics by diving right into the forbidden topic of seizures. "Have you seen any yet?" Praise God, we could shake our heads and answer no. (The watched pot theory is still working.) Still, he's a little surprised by this but is just as thankful as Rob or I that her little, irregular brain is playing so nicely. He gently reminded us that she is, and always will be, at high risk for these nasty things but we'll continue to leave her medicine free as long as she is seizure free. Dr. T shared with us though what one of hers would look like should one ever rear it's ugly head and now I know there will be no mistaking one if God forbid, one ever does.

And then some minutes into our conversation, he asked what we have never been asked before.... "Can she run?"

Think about that.

We have been so accustom to questions like Can she crawl? Can she stand? Can she walk? Does she walk by herself? How well does she walk? Walk.... walk.... walk.... and then finally someone asked if she can run. It didn't even dawn on me until the drive home while I was comprehending the details of the appointment but that's a question we haven't heard before. Running is a physical activity that has been out of our league, not even a distant focus or goal, because quite frankly, who cares? We just wanted her to walk and walk safely. To many, that's a fairly nonchalant, unimportant question but to my ears, that question is a true testimony to how far she has come and to all that she is, and will be, capable of. Needless to say, those were three very small words that made my day a whole lot brighter.

So, can she run? One day she will... but for now, she can walk pretty darn fast and I guarantee that's good enough for her!

Tuesday, November 9, 2010

Ortho Appointment: Botox

Oia and her entourage, which today consisted of Rob and I, her PT, and the student PT, all attended her ortho appointment at Kluge. Oia's PT is so involved in our ortho appointments and is always a great support for us. We had some things on our mental list of concerns to bounce around at this mornings appointment. Namely, questionable leg length difference, a hip x-ray, and Botox.

I'll start with the first, Oia's leg length. By quick physical examination long ago, it was mentioned that Oia's left leg (the dominant, stronger leg) was a tad longer than the right. No exact measurements were taken at that time and Dr. R believed that the AFO worn on Oia's right foot makes up for the difference. Our PT measured Oia's legs last week before beginning session and as accurate as she (and I) could tell, the length in Oia's legs differ by at least 1 cm, maybe closer to 1.5 cm. We questioned Dr. R today whether or not this needed to be addressed with a shoe lift of some sort but he felt that wouldn't be necessary at this time. He still believes that her AFO is corrective enough in making up the difference and that this length discrepancy is simply par for the CP course. As I've come to understand, an extremity with tone issues will not grow at the same rate as an extremity with normal tone. So there we have it, something else to keep an eye on. One leg is shorter than the other but no need for concern at this time.

Second on our agenda of concerns was a hip x-ray. Dr. R mentioned once some appointments ago that Oia should get a hip x-ray, the routine procedure around age 3. Oia has yet to have one. Dr. R said Oia's hips were fine and there really was no immediate need much less any concerns but in order to establish a baseline for any future need or shifts in her leg/hip structure, she'll get x-rayed at her following ortho appointment in 3 months. Painless and quick, why not?

And onto the biggest concern that is dangling in front of us which unfortunately won't be so painless is the idea of Botox injections in Oia's right leg. We are about 4 months post casting and subsequent ankle injury. Oia gained some good range in both ankles post casting but in retrospect, it's not for us again. Oia was immobile for too long follow casting due to the stretched and weakened muscles so in our case, the cons for casting outweighed the pros. It makes sense.... immobility in anyone with CP can be more harmful than helpful and in our situation that rang true. Our only other option right now to relax Oia's right leg is to try Botox. Two shots, hamstring and calf muscles. Aside from soreness at the injection sites, the risks are minimal. We have to do all we can now in the hopes to avoid more invasive procedures later down the road. I don't even allow myself to think of those "invasive" procedures now. Scares the hell out of me. BUT, for now, Botox it is. Just need to schedule the appointment... will more than likely have it done this month.

So, that's one appointment down for the week, off to a neurology appointment tomorrow after preschool.

Friday, November 5, 2010

Sleep, Oia, Sleep

I remember way too many details of the day Oia was diagnosed with cerebral palsy. Details of the hospital, the appointment, the doctor, the ride home, and the subsequent hours of that afternoon when the world expected us to move forward but we had no idea how to and not even an ounce of will to do so. The details will never fade. Shortly after returning home from that appointment, Rob and I layed on our bed, both propped up on one elbow as we lay facing our world; little Oia, who was peacefully napping in the center between us. We were many things that afternoon, but mostly tearful and silent.

I remember feeling confused as I teetered the line of denial and hope. I scanned Oia's body head to toe as she napped between us, looking for any outward sign that might convey that what we had just heard about our daughter's future was all a big mistake, a misdiagnosis. She napped with her chubby legs relaxed and slightly bent. Her tiny hands were relaxed and unclenched, her thumb untucked. With some lingering hope in my soul I remember saying to Rob as I rubbed her hands, "But see, her hand is not fisted right now...." to which he softly answered, "Yes, Mo, because she's sleeping".

From that moment on there was no more denying it. We were a family who would forever live with cerebral palsy.

As I did then, and still do, I love to watch my little girl sleep but doing so can be so deceiving. Once Oia closes her eyes, I should make a dash for my to-do list and prepare for another day but instead I hover over her bed for just a few extra minutes and stare. I stare at what looks like a girl who lives absent of a life-long disability. It's as though her cerebral palsy drifts from her tired body into the still of the night, leaving her alone to be a typical child. It's the only glimpse I get of a girl who doesn't battle to overcome spastic muscles on a daily basis. A girl who is free of therapy, one who can run and jump and talk and see well. In slumber, there seems to be no stiffness, no tightness, no one-sided weaknesses, and no overflow. Only a girl whose stiff body becomes limber and restful and completely comfortable. But despite all, I can still say that I stare over my sleeping baby with ease... because I know that regardless, whether she's asleep or not, she is still so absolutely perfect in every way.

Sunday, October 31, 2010

Halloween at UVA

Last year, we experienced Halloween on UVa's Lawn. The Lawn is a beautiful and historic part of UVa's campus that houses honor students and some faculty who generously open their doors to pass out candy to swarms of cleverly disguised kiddos. I'll always remember Halloween at UVa as one of the first places we were eager to take Oia to once she began walking independently, which was around this time last year. Our hearts were swollen with pride as it was a big deal; a celebration of sorts, to witness her finally participate at such an event on her own two feet. We had such a wonderful time there last year that before even leaving, Rob and I told each other we'd be back with Oia again this year. Tonight was the night.

Our ladybug wasn't feeling completely herself, thanks to the sniffles courtesy of preschool, but she still managed to work the crowd for a few pieces of her beloved chocolate. We trick-or-treated our way through a few stops but Oia was perfectly content to people watch by simply poppin' a squat right in the midst of it all to enjoy her chocolatey treats.

After a belly full of chocolate, she decided to mingle a bit. She led the way, Rob and I followed.

We stumbled along many other lady bugs, lots of bumble bees, princesses; you name it, we saw it. But the highlight of our evening was stumbling into a very special gnome along the way. Oia was intrigued and actually shook the little fella's hand as if to say "Nice to meet'cha!" Probably one of the cutest things we've ever seen.

Good times. More memories. What else could we ask for?

Wednesday, October 27, 2010

PT: Obstacle and Ladder

Since Oia began therapy at just 7.5 months old, she has been nothing but complacent and willing to do all that has been expected of her. Sure, there have still been tearful moments during more challenging sessions but she'd always, and I mean always, work through the tears. Her will has always amazed me and still does. However, in recent days physical therapy has been a little challenging for all involved, which is myself, PT and of course the star of the show, our Oia.

Challenging for a couple of reasons. Let's state the obvious. Oia's been in therapy pretty much all her life. Right now, an average week generally consists of 5 or more therapy sessions in one form or another, either at school or privately. Is she getting burned out? I don't think so, sessions still involve lots of singing, toys, and any diversion that Oia finds particularly motivating. As her abilities grow, the exercises become more demanding, more challenging, especially so in private CME sessions where she is often pushed past her comfort zone. Combine all the above with a 3 year old and you sometimes get a healthy protest. In recent CME sessions, Oia seems to hit her limit with about 20-30 minutes left. This translates to major attitude, saying "No", crying, bending knees, and refusing to stand. There's nothing to be done at that point. Sessions are pretty much over or let's just say a whole lot less productive.

But, it doesn't really bother me. I don't blame her. The behavior isn't ideal but I am still thankful to be experiencing it. She is in many ways like every other 3 year old, full of opinion and able-bodied enough to perform such drama. It's a phase. This too shall pass and I'm not sweatin' it.

Witness for yourself a very small taste of the Teaster 'tude. This glance is very mild in comparison because this particular day she remained on her feet and still stepped on. This was not her best attempt at the obstacle course as protest throws off her game a bit, however, subsequent trails were better. Note: You'll hear her say "bye-bye" which means she's done and ready to go home. (We've been working on this course since about spring. The goal is for Oia to do this independently.)

Once sessions become "less productive", we have to switch gears, step away from CME exercises and focus on what Oia does like to at least work on whole body strengthening. This ladder followed by a huge tube slide dried up a few tears which means we ended the session on a positive note.

Happy, mad, smiling or cryin'.... I'm still pretty darn proud of this girl.

Monday, October 18, 2010

New AFO, New Shoes

Waiting on a new AFO in this house, at least for me, is a little like waiting on Christmas Day. You know it's coming and waiting just one more day for something you so badly want (and need) feels like eternity. But finally, on Friday, it was Christmas here yet again. Oia and I picked up her new brace.

She has been in her previous AFO since mid-March, which means she's been in the same pair of tennis shoes that long as well. For the last 7 months, she's wore the same shoes from the time she woke in the morning until she bathed in the evening; only AFO/shoe free time is during nap. Honestly, her shoes may not have held up another day... but I'm not complaining. A lot of miles and hard work goes into wearing out a good pair of tennis shoes!

Obviously a new, larger brace needs new, larger shoes. Ahhh, shoe shopping for Oia. Not my most favorite of times to say the least, considering Oia needs a missized pair of shoes to accommodate the brace which no one has been willing to sell us in the past. Left foot is currently a size 8-8.5 and right foot with AFO is a 9-9.5 WIDE. Previously, we had to buy 2 pairs of shoes; one pair in each size. Then pull one shoe from each pair to make Oia's odd pair. It's wasteful and oh so ever aggravating when the sales clerk offers a minimal discount on the 2nd pair as if to do us a favor, if they even bother to offer a discount at all. But headache and cuss words no more.... thank you NORDSTROM. Nordstrom sold us a missized pair of shoes last weekend without blinking an eye. And, (it gets even better) they offered to order any shoe we needed, regardless of whether or not it was currently on their display, in whatever sizes we needed. My life just got a whole lot easier and Little Miss now has two, DIFFERENT pairs of shoes to wear this winter with her new brace because every girl deserves some variety. She will be either sporting around in pink and gray Saucony tennis shoes or a 'dressier' pair of brown and pink Stride Rite tennies. A choice. A first. This is nice.

One new pair: right insole and tongue removed = the perfect fit. And the velcro strap on this pair didn't need lengthened, another first. I think I heard angels singing at check-out.

New AFO is slightly different than what we've had before. It is a two-part brace, for a lack of better terms, and the hinge functions a bit differently than what we're used to. The hinge is springy and gives Oia's leg more input to flex at the ankle. This gives her a bit of assistance in lifting her foot into dorsiflexion so her foot/toes don't drag as much with each step. It really seems to be helping. Also, we must first insert Oia's foot into a "shell", making sure her heel is all the way down. Then once that is in place, we slide her foot back into the brace itself and strap her in tightly, making sure again that her heel is down and ankle is as close to 90 degrees as possible. The whole purpose of the "shell" (SMO I think it's called) is to give her foot the extra hold it requires to keep her properly positioned in her brace. Kiddos with CP who experience muscle tightness have a tendency to "pop out" of their brace and this extra casing around her foot really keeps her heel down. Her calf muscles and hamstrings are getting tighter as she continues to grow so having her heel down is crucial. One bad thing about the extra layer of plastic though... her feet sweat terribly inside of it.

Brace shown separated, shell inserts back into hinged portion.

Brace as a whole

Oia is usually able to wear each brace anywhere from 6-7 months before outgrowing them and getting recasted for another. New brace will get us through the winter which translates to no more shoe shopping until spring. Yay!

Friday, October 15, 2010

Happiness is...

...enjoying your first ever cup o' goodness from Starbucks!

Monday, October 11, 2010


Oia and I made a small venture this morning to our nearest Home Depot. Our mission: paint. After two years of living in this house, our interior walls will finally get the paint they so need. I called in our order before leaving the house so I expected the trip to be quick and uneventful. When we arrived at the paint counter, there was no one available to help us but we were in no rush, just two girls out enjoying our day. As we waited for someone to appear, I picked up Oia and placed her on the only stool next to the counter where she sat feeling like royalty of the paint department.

Our wait was short as help arrived momentarily. I watched our help round the end of an isle and then proceed behind the paint counter. He greeted me and I greeted him. We had a mutual, unspoken connection once he noticed Oia by my side and within a matter of just seconds, although I knew nothing about this man, I felt great admiration for him.

He asked if he could help me. I told him about my order of paint and he gestured to the bucket on the floor. I then requested 2 more gallons of another color. We smiled at one another and then he gladly began working on our request. I remained at the counter because I wanted to wait and watch this young man work his magic but instantly found myself with glassy eyes and a lump building in my throat. Just like that. I wanted to kick myself for the sudden surge of emotion. I quickly scooped Oia up off her throne and headed a few isles away to gather myself before anyone could notice. While Oia turned every knob on every grill she could put her hands on, I stood trying to comprehend all that I had just saw.

I just saw a man struggling to walk with a crooked and palsied body, knees that rubbed in stride, but a man who still offered to help lift a 5 gallon bucket of paint into my cart.

A man in AFO's, noticeable as his pants lifted ever so slightly as he walked.

A man with eyes obviously misaligned, but who still found it easy to look up and smile at a stranger.

A man with bent, stiff, uncooperative fingers, who managed to slowly but accurately type in my paint order.

A man who softly spoke words that many must struggle to understand, slurred and slow, but a man who didn't resist conversation with me or anyone else who came to the counter.

A man who wore a shiny wedding ring; a man who seemingly found someone who vowed to love him unconditionally.

Today, I saw a man who lightened my heart. Pure and simple. And in the first glimpse of him this morning, I felt so hopeful for my own daughter and for her future. He was more than a man who mixed paint for a living. He was an inspiration.

In the beginning, we wondered if Oia would ever walk or talk. Today we have our answer. But with each ounce of progress and milestone achieved, I still drift and wonder about her future. All moms do. Thoughts of slumber parties, dances, high school, college... Will she be able to drive a car? Will she have a profession? Will she experience true love and be married? Will she grow up happy and proud of who she is? Will she find acceptance in this world? The wonders are endless but the man who happily wore his bright orange apron this morning unknowingly filled my heart with even more hope and assured me that yes, most of this, if not all of this is possible... one just has to want it.

It's funny what inspires us. If I encountered this man just three years ago I would have never left with the same impression and outlook as I did this morning and I certainly would have never had to hide myself while I wiped away hopeful, happy tears from my face. But, lucky am I today because that is exactly what I did. I went to Home Depot to pick up 7 gallons of paint and instead I came home with that and much, much more.

Saturday, October 9, 2010

Hippo: Righty Rides

Another session of hippotherapy... another great morning. B, Oia's therapist, recently added noodles to the barn which Oia really enjoys riding through.

The noodles have several great therapeutic purposes; reaching up/out, grasping, etc. Here is a video of Oia stopped under the noodles to encourage the use of Righty. She is getting by with bonking one of the volunteers on the head with a noodle, simply because she is actively using two hands. (This girl can get by with just about anything as long as Righty is involved.) Notice that once she is turned around facing forward again, she grabs a hold of the handles with both hands, just before B gives her the verbal cue to do so. Awesome.

"She's Smart"

When Oia's first neurologist diagnosed her has a spastic quadriplegic with cerebral palsy, he in the very same breath advised us to "familiarize ourselves with mental retardation" because he strongly felt this was what we'd be up against. Our girl... mentally retarded, a hole in her brain.

Numb. Words that stung. Still the worst day of my life.

To this day, the words of that less-than-desirable doctor make me tear up every single time I revisit that moment. So why relive the moment?

Because I'm a remember-where-you've-been kind of girl. Because I appreciate the path that lies behind me since after all, that path has brought us to today. And today is good.

Because when your child's preschool teacher informs you that she'd like to move your child into a class of 4 year olds; saying things about your child like "she's smart" and "she's ready for pre-academics" makes it really hard not to remember the once spoken words of that painful moment, but suddenly, they're not so painful anymore for someone else sees the potential we knew she had all along.

We know a girl today who is bright and inquisitive. We know a girl who is identifying colors, learning letters and numbers. She is participating in literacy centers, math centers, and calendar time. She is enjoying recess and PE with her classmates; on her own two feet. She is socializing and her personality is blooming. She is aware. She understands completely. And we never, ever doubted it. Not for one second.

Monday, October 4, 2010


Rob and I took Oia to the park yesterday. Weather was remarkable and there was no other place we should have been than outside on such a beautiful day. The air was cool so Oia was toddling around in a comfy pair of pants, pink of course, the first time since last winter.

She played and smiled and enjoyed having the both of us there with her. The park was all ours and life was good. Then shortly later, a mom or two arrived with their young children which always has a tendency to set my mind in motion. And yesterday it did. The thoughts come without warning and for reasons that I could never find the right words to explain.

And, suddenly, those cute pink pants seemed to be in the way. And I'll admit... those pants are in no ones way but my own. Those pants cover up the ticket, the pass, the explanation; call it whatever you want, of who we are. They hide an important piece of our story. That little brace that accessorizes every one of Oia's outfits has become my sense of comfort. It answers a lot of questions before they even get asked. Being in public without it, like the pool of course, or when the weather is cooler and it's hidden under pants like yesterday, makes me feel no different most days than a fish without water. That brace is my security.

One may notice the cute glasses that rest on Oia's sweet little nose, or the eye patch that hides behind them, but glasses and patches are not entirely all that uncommon. One may notice the drool that hangs from Oia's chin or even her dampened shirt but she is a toddler after all, and for now that is within the realm of acceptance. Maybe some notice her microcephalic head but doubtful; she's been blessed with a beautiful blond ponytail that catches all the attention, not to mention the most glorious smile you have ever seen. They probably notice her limp or uneven gait but may assume she is a new walker and just tall for her age. They may notice her right arm functions a bit differently, a little slower than the left, but not always. If they're lucky, they'll catch an earful of one really important story known and told with conviction by no other than Little Miss herself, but likely to not understand a word of what she spoke. Then the question of "How old is she?" pops up which seems to fill strange faces with question. Maybe they know something is special about our girl... or maybe they don't. But, I can read their minds... they glance and they wonder.

Security comes in all shapes and sizes. Mine these days seems to come in the form of a molded piece of plastic that wraps around my daughter's right leg. It allows us to be who we are without question or rather it is the answer to the unasked questions. It allows us to be uniquely different. I'm proud of that little brace but no more proud of it than I am of the little girl who wears it. And needless to say, I'm thankful for it; it's functions are many. I just wish the whole world could see it... and all the time.

Picture from 10.2.10 while spending the day at Belvedere Plantation.

Friday, October 1, 2010

PT: Balance and Step Ups

Oia had 2, one hour PT sessions of CME per week during Early Intervention with our wonderful PT. Since she now receives PT services through her preschool and is no longer in EI, we still chose to continue with private PT sessions but 1x/wk with the same wonderful PT. The once a week private session is where she practices CME, a method of PT that we attribute much of Oia's mobility and strength to.

First 2 videos are exercises that T will sometimes do with Oia. The goal of balancing while in mid air is for Oia to stand tall, potentially reach upward, to provide a decent stretch throughout her hip flexors. The student therapist is trying to encourage Oia to reach up and touch the ceiling (most CP kiddos have some degree of compensation which makes standing tall and straight very difficult, which is the case for Oia). Also, the movement in mid air is dynamic which creates a greater and constant challenge for Oia to maintain subtle weight shifts thus remaining balanced.

Same dynamic movement, different approach with beam:

The boxes below are greatly challenging. Oia must step tall, shift weight forward throughout her trunk and hips, while bending the lead leg knee. Tall order, especially without hand holds. She does fairly well but this CME exercise will be a part of our routine for a long time to come.

Not bad, really. More PT videos of CME coming soon...

Oia's Week

Our new life, that is post-early intervention, is moving along fairly well. I'm enjoying the change of pace and scenery as therapies are now at the therapy center, instead of at home. I feel a part of society again to actually have a reason to leave the house and drive Oia to school or therapy. The addition of preschool into our lives has only been minimally stressful and I know it will prove to be so instrumental to Oia's social development. Change is good.

I'm sure it goes without saying (as most of you in this boat well know) that any part of our day, scheduled or not, lends itself to countless therapeutic opportunities that we are, and forever will be, mindful of. Daily routines always turn into mini PT, OT or ST focuses however, here are the scheduled portions of Oia's typical week:

M: Preschool, 8-noon, PT and OT during school
T: Open for appointments, or 9:30-11:30 playgroup
W: Preschool, 8-noon, ST during school
R: Preschool, 8-noon, PT and OT during school
F: Private PT at center, 1 hour session of CME
S: Hippotherapy, 30 minute session
S: Open

Oia's a busy girl and life is good; but therapy makes it even better.

Thursday, September 23, 2010

Potty Talk

Parenting is a day by day experience and I find myself just learning the ropes one day at a time. Crossing each bridge as we get to it and moving on to the next; that's just how we do things around here. So, the bridge that is currently stretched out in front of us is one that I'm not thrilled about crossing, mainly because I have NO. CLUE. how to.

Potty Training.

It's been on my mind for a long time now. I just bought Oia size 6 diapers today for the first time since the 5's are getting a little small. As best as I can tell, 6 is the biggest size stores sell, unless you special order these things. That made me panic a little; I felt the pressure to push the issue and really begin tackling this process. I have mentioned in previous posts that Little Miss has in fact christened her mini throne and not once but three times, by the way. However, these pee-pee's on the potty have turned into once in a blue moon ordeals. She knows where the potty is, what it is used for, and she even knows how to flush one all by herself. She thinks it's great fun. She loves to have her own square of toilet paper and she shows me she knows just how to use it.... problem is she doesn't GO while on the pot. Most days, I set her on the pot after she wakes in the morning and after naps which one would think are likely times to pee but Oia doesn't. Sometimes she may even refuse to sit down at all, arching her back and stiffening her whole body. I don't force it. But what in the world does one do??

I talked to Oia's developmental pediatrician about how to potty-train a kiddo with CP. I questioned whether Oia 'feels' the urge or sensation that signals one to use the bathroom. Afterall, this is a muscle related issue and what does CP affect? The muscles. Doctor said this may be an issue but Oia, as any kid typical or not, has to 'learn' these urges and how to control them, it's just something that will take more time for us.

Diapers these days are so technical and wick away any moisture so quickly that kids don't even feel wet. Oia has yet to be bothered by a wet or soiled diaper (which is a sign that one is ready for toilet-training) so I thought perhaps a pair of wet undies may get her attention and alert her to what she just did. So, that was my experiment this evening. I put Oia in a pair of teeny undies for the first time, no diaper, to see how she'd react once she pee'd in them. Mind you, I kept asking her if she wanted to go sit on the potty and go pee pee and she'd say yeah but then once we'd get to the bathroom door she'd say no and smile. Somehow, she's turned this into a game.

Well, after about an hour of wearing her undies, she pee'd. And then laughed HYSTERICALLY as her pee ran down her legs and splashed into a puddle on the floor below her. Massive amount of pee, all over. And who wanted to proceed and carry on about her evening after she just pee'd all over herself; as if nothing just happened? I'll give you one guess.

I'm not convinced she's ready. But maybe she is. Rob says she is but let me mention he's the one who frantically hollered upstairs for me to come down and take care of our daughter after she just soaked herself and the floor. He hates messes and wanted no part of it. Umph. PT says don't force it until Oia and I are both ready, otherwise we'll both just end up frustrated. I just don't know. Quite frankly, I don't mind having a toddler in diapers. I still find myself focusing on physical gains and Lord knows getting her to wear an eyepatch for a total of two hours a day is enough of a chore; potty training aside. It just hasn't made it's way to the top of my priority list yet. Bad Mommy, I guess. What in the world do I do? How in the heck do we cross this bridge? I'm just not sure.

Pictures of Oia were taken today while she was checkin' herself out in her first pair of undies.

Saturday, September 18, 2010

Back in the Saddle

Hippotherapy just resumed from summer break which was during the month of August. So today, we ventured our beautiful 45 minute drive outside of town, for Oia's 30 minutes of therapy time, priced at just over a dollar every minute on horse back, then traveled another 45 minutes back home... and it's worth every minute and penny spent because this girl absolutely loves it (and so do we).

I told Oia last night while I was lying her down in her bed for night-night that once she woke in the morning we were going to see Ms. B, ride Kasper and go "bouncy-bouncy"; which means trot really fast. She smiled a smile that extended way beyond her binki and said Yeah! with wide eyes.

Today's session was spent 'off-road' as Oia rode Kasper out of the barn and down into the woods for a taste of her first trail riding experience. Along the trail were hidden friends which made the ride more interactive. Here is just one of the few friends we stumbled upon along the way...

The unpredictable terrain created more of a challenge for Oia to remain upright and centered on the horse; slopes, uphill, downhill, bumps, logs/water to cross over, and sharper turns. BUT, she rode like a pro.

Like I said... worth every stinkin' penny!

Tuesday, September 14, 2010

High on Preschool

I knew Oia would be a bit hesitant with the transition into Preschool. Despite being a social girl, she is still very much a girl who appreciates the company of mommy and/or daddy at all times and we can't blame her. She depends on us for many things; things that are beyond her control. In addition, we sent her during a time of immobility and shaken confidence as a result of her ankle injury. And so it was no surprise that after a couple of clingy and tearful mornings in the first two weeks, my predictions were proven correct. Red face, bottom lip, tears...hard on the both of us. The rocky start led to Oia's teacher suggesting that Oia come an additional day (3 full mornings instead of 2) to help Oia get comfortable with the change and the suggestion has made all the difference; and almost immediately.

Now, as far as I can tell, this girl loves Preschool!

How do I know this about a girl who can not fully communicate with me? Well, she's beaming with an ear to ear smile when I pick her up; not a washed look of relief on her face as in the tearful beginning. At one pick-up, she motioned and reached back for the classroom once we exited and made our way into the hall to leave the building which translates to "I'm not ready to leave yet." She toddles out of the school on her own two feet, carrying her own backpack, proudly saying "bye-bye" to all she passes; not clingy to my neck and being carried out of the building while saying a pathetic "Go, Mommy, Go" as she once did. She jabbers up a storm on the way home as if to tell me all about her morning; while I drive, listen and wished to hell that I knew what she was tell me but still thankful to "hear" all about it. She gets home, one day refusing to take off her backpack and appears to be high on Preschool as she aimlessly 'runs' the length of our house, laughing at herself and playing like tomorrow may never come. Our fridge is filling fast of Oia's Preschool masterpieces that she proudly shows to daddy once he makes his way in the door from a long day at work. Oia's actions are her words and I hear them loud and clear because on school days, she is as happy as I have ever seen her.

And I hope this never changes...

Ortho Update

Oia's right foot was measured for a compression sock about two weeks ago. The world's-most-expensive-not-covered-by-insurance sock should be ready for us any day. And no, it doesn't come in pink. The sock should alleviate the constant edema she experiences in her right foot and will be worn under her AFO. For as long as we can remember, since early infant days, edema has been a part of our story but hopefully the sock will zap the problem.

Also, we returned today to the same practice that fitted Oia for her sock to seek other options for a better, more functional right AFO. Previous braces have come from elsewhere (KCRC) and our experience with this ortho department has, for the most part, been easy. No complaints. But, like anything else we deal with, we are constantly asking ourselves if the brace we currently have is the best option for Oia thus giving her optimal potential for mobility. Her gait is always a work in progress and constantly changing and we have to make sure that Oia is getting the most out of her current orthotic, which for starters, we know is too small right now. Below are the soles of Oia's shoes; the only pair she wears with AFO. Notice the extreme wear on the inner right sole (which is the shoe pictured on the left). Oia leads with her dominant (left) leg and her weaker (right) leg has minimal dorsiflexion which causes a slight drag of her right foot. The shoes tell all...

Today's new perspective and second opinion on a revised AFO was found beneficial and a refreshing twist on what we current have for her. So, Little Miss was casted today for the new brace and she will be getting a better insole support for her left foot as well. Hopeful that the new brace, in connection with PT exercises, will support her foot better and allow more toe clearance/less drag and better leg/hip alignment. Tall order, I know, but worth aiming for.

Hope to have the new brace by the end of Sept, early October.

Thursday, September 9, 2010


"There is no chance, no destiny, no fate, that can hinder or control the firm resolve of a determined soul." ~ Ella Wheeler Wilcox

Thursday, September 2, 2010

If The Shoe Fits

I have to give credit to Katy at Bird on the Street for inspiring this post. It pains me to know that others go through the emotional chore of finding shoes for their kiddo in AFO's. For many, looking for these shoes can be a daunting task. I have stood in the middle of a shoe store before, admittedly crying, surrounded by boxes of shoes that just didn't work. It probably didn't help that the particular store was swarming with bounding toddlers who were picking out glitzy sandals and sassy flip flops while I was forced to select from a minimal and rather crappy choice of extra wide, not so cute, bulky, tennis shoes. I've toughen up to the process over the years because I've learned the requirements and tricks of the trade that make a good fit, for us at least. So I've come here to share a few pointers:

1. For starters, we always pick-up and feel a shoe. It must be lightweight and flexible or it's an immediate no-go. And yes, some toddler shoes are just plain too heavy.

2. We always look for a shoe that has a low toe, meaning the less the shoe covers the top of the foot, the better. Since we're buying girly shoes, this is fairly easy for us to find. This one of Oia's shoes and it is an example of what we call a low toe:

3. Another requirement of ours, so far, has been velcro straps. They're practical, quick, and easily adjustable. However, the one obstacle to some straps is that once the shoe is on over the AFO, the straps become too short to wrap over the top of the foot to fully fasten. We always take our shoes to a local shoe repair/alteration shop who beautifully lengthen the straps to make them work. Or, a handy neighbor with a sewing machine can do the trick too. We have had several pairs of Oia's shoes altered this way. This is her current pair with straps lengthened on the right shoe to fit over her AFO:

4. We all know the rip-out-the-insole-of-tennis shoe trick, but do not be afraid to cut out the tongue of a tennis shoe either. We did this to a pair of tennies that Oia wore a year or so ago and it made no difference in the function of the shoe but it did eliminate the bulk thus making for a better fit. Here is that shoe, you'd never know they originally had a tongue:

5. And when the sky parts and the angels sing because you have finally find the perfect fit, do yourself a favor and buy the same shoe in a couple different sizes larger so that perhaps you can save yourself from going through the same search later. I was given this advice some time ago (Thanks, Amy!) and it's been well worth it. The first shoe pictured above is the style of shoe that Oia wore last summer which worked perfectly. We purchased the same style two sizes larger and it will (hopefully) be her shoe for next summer.

6. Spending a lot of money on a pair of shoes is not my idea of fun, not even for myself. However, finding a functional and attractive shoe that fits is priceless in my book, regardless of what the price tag says. We find that Stride Rite shoes are easiest to accommodate, always have wide and extra wide, is the most durable, and I can always find what I need there. Plus, they have never denied me a return or exchange, even months after the purchase and they are always willing to work with me. This is very helpful, particularly when trying #5.

We all learn as we go, just like anything else we do as parents but knowing the above has been beneficial to us. Here's to happy, rather happier, times at the shoe store.

Wednesday, September 1, 2010

Happiness is...

when you take your little girl to preschool, help her to her table, watch as she tries to pull out her own chair, then look up at you before sitting down to smile bravely and say "bye-bye".

Bye-Bye, Sweetheart. Have a great day.

Saturday, August 28, 2010

Beating the Odds

In recent years, I've stumbled upon a startling statistic that roughly 80% of all married couples raising a special needs child end in divorce. That's alarming and heartbreaking all at the same time, but not surprising. The constant emotional and financial strain is often too much for one couple to handle. The special needs world provides a continuous and often unwelcoming ride of emotional ups, downs and all arounds and if we're not holding on tight, we're guaranteed to be knocked off.

Although I would never dare say that Rob and I have it easy, I do know we have a lot to be thankful for. We have more than enough to fight for, to celebrate, and to keep alive as long as we can. We have chosen to check our grips daily, hold on tight and tackle this life as a team. We may have our moments but at the end of the day, we are still best friends ready to do it all over again. Two people who have found balance. Love and Oia; our glue.

Somehow, we're doing it. We're beating the odds and making it work; one day at a time. We've accomplished a lot in our 12 1/2 years together and today marks our 6th year of marriage. But who's counting? We're just ready to face whatever comes next... and looking forward to whatever that may be.

Happy Anniversary, Rob. I couldn't make sense of life's craziness without you. You always have a way of making everything just a little bit easier.

Friday, August 27, 2010

A Day at the Museum

We recently spent a day at The Children's Museum of Richmond at Short Pump. This is the best museum suited for toddlers that I have ever been to. Oia had a blast. Actually, Rob and I did too. We let Oia roam and explore as she pleased. Rob and I were merely her spotters, keepers of her safety. A fairly new thing for us. She navigated the museum with minimal assistance; us mainly assisting or spotting her on steps and unlevel surfaces (mats, ramps, etc). She did great.

There was a Wild Safari Train (which Oia did not care for), a water play area, bouncy whales, a Jack and the Beanstalk themed jungle gym, a 2-tiered pirate ship, a 'sand' box, a toddler garden, a play stage, and a HUGE crafts room for the older kids. The Jack and the Beanstalk jungle gym was Oia's favorite, particularly its slide.

But this was really the way Sassy preferred to go down the slide each time...

Fine with us. It was fun and good therapy all at the same time!

Thursday, August 26, 2010


I had all weekend to fume and stew over the comments that were shared with me regarding Oia's 'touching' on just the second day of preschool; which was last Thursday. My fiercely protective instincts that weekend were at an all time high and I could have downed a bear in seconds, no doubt.

So come Monday's drop-off, I informed Oia's teacher to check her schedule and find a time that we could discuss some concerns of mine. She agreed. At pick-up that same day (I pick-up Oia at noon), she asked if I could come back around 3 after her last student leaves. I agreed. No time like the present.

I returned on time at 3 with a mental agenda to run through. I'll tell you, I've held hundreds of meetings/conferences before, but as the role of teacher, never as the parent. Whole new ballgame that is...I was nervous sitting on the other side of the table, so to speak. PT just 'happened' to be in the room filling out paperwork when I arrived, but good for me, I had questions for her too and I'm all about killing two birds with one stone.

In a nutshell, teacher explained where she was coming from with her comments. Since Oia is wobbly on her feet teacher is concerned that Oia could get bumped or knocked over easily when the other kids shrug her, therefore jeopardizing her safety. Apparently, there are some kids with sensory issues in the room and touch is a problem for them. I respect that. Moving forward.

My stand was simple in request. I shared that I walk a fine line when it comes to telling Oia 'no' when she has gestured or touched a kid as a way to communicate and interact with him/her. Being told no may discourage one of the only ways she communicates and discouraging her would hinder an already significant language delay. I reinforced that I viewed this touching and gesturing as partly a curious behavior (which is age appropriate) but also part of a natural progression of language. Teacher agreed. I requested that the desired (hands-off) way to communicate be modeled for Oia, along with giving her a key word or two to try and use in place of a tug or touch, all the while informing the classmate what Oia is asking or trying to say to them. It really only takes seconds to do this and eventually, one day, she'll get it.

Teacher stated that Oia is having a hard time transitioning to preschool, though she admits she is still just a "baby" and that this will take some time. Preschool has proven tough even for our social butterfly. First day was fairly smooth but subsequent days have been worse. The fact that she goes Monday, then off for 2 days, goes Thursday, then off for 3 more days makes the transition harder to get used to. Suggestion was made to send Oia another day of the week to give her more frequent exposure in hopes of making her more comfortable sooner. Rob and I are on board. Beginning next week, Oia's new schedule will be Monday, Wednesday and Thursday, 8-noon. Tuesday's are open days for playgroup, appointments, etc. and Friday is our private PT day.

On to the PT part of the meeting. Oia's IEP lists the minutes per week/month that each therapist should be working with her. I have no doubts that they will follow this plan but knowing what therapists she works with each day is something I would like to know, without having to ask every day. (I send Oia on Mondays and Thursdays because these are the days that all 3 therapist are at the school together.) I can't depend on Oia to tell me who she worked with or what she did so I mentioned I'd appreciate some checklist or note telling me the bare minimum; who worked with her and for how long. And because I am acutely aware of the amounts of paperwork that teachers are responsible for, I even volunteered to make the sheet for them. PT agreed to fill out and send home with Oia whatever I make. Sheet is made, copied, and ready for Monday.

Teacher thanked me for coming forward and discussing my issues. Overall, we ended the discussion on the same page. I truly believe this is a teacher who wants what is best for Oia and for all of the students, despite my moment last week. I had no problem with her message, but rather it's delivery. Personality differences, I guess. Bottom line is this: They know who I am. They know I'm paying attention and I may even have the potential to be a pain in the ass. But more than that, I am here to work with them, not against them.

And if that's not enough, Rob represented us at our county's Special Education Advisory Committee the following day. Now they know the both of us.

Sunday, August 22, 2010

Dear Oia

You were loved long before we knew you.
You were carefully and thoughtfully selected for us as a couple.
You were creatively tailored to make our lives richer.
You are small though your purpose is big.
You work magic everyday.
You are by far the best teacher we've ever had.
You highlight the good in this life just by being you.
You are our bright spot.
You are a brave preschooler.
You understand hard work.
You fall and get right back up.
You inspire and you are strong.
You have no limits.
You warm the hearts of those who know you.
You are perfect just the way you are.
You are our most precious gift; leaving us to wonder what we ever did so right to deserve a daughter like you.

Today, you turn 3. We are honored and proud to be your parents. Thank you, Oia, for the most amazing three years of our lives. May you be blessed with many, many more days that add up to many, many more fulfilling and happy years.

Happy Birthday, Oia Lee! We love you more than you will ever know.

Mommy and Daddy

Friday, August 20, 2010

Good News

Oia is back on her feet and walking again! Praise the Lord. We doubled up on therapy this week and have spent a lot of time out of the house so she'd be less tempted to crawl. The mall, several parks, and even the baby doll isle at Toys R Us have all been our grounds of therapy and source of motivation in the last two weeks. We provided her with as much assistance as she needed until finally she needed no more. Little Miss has turned a corner yet again, not quite back to 100% but pretty darn close. She has worked so hard. The sprain seems to be behind us now and we're not looking back.

Thursday, August 19, 2010

Not Already

It's no secret that Oia has a significant expressive language delay. Her verbal communication skills are in the ballpark of 1 yr old. She has roughly 30-35 words that she is consistently able to articulate and relies heavily on gestures to address her wants and needs to those around her. Gesturing is a fairly new skill for her which has made our lives a little bit easier, as one can only imagine. Pointing is another one of her very new skills. Developmentally, babies learn to isolate one finger and point by 12 months old. Oia is just shy of her third birthday and is finally perfecting a good point.

Oia's gestures are important to us and we view them as a step forward in her communication. We are also thankful Oia even has the ability to 'speak' to us in such a way. CP can rob a kiddo of many functions, even a simple hand or arm movement, so I consider ourselves fortunate that Oia can point at what she is talking about or tap a chair to indicate that she wants you to sit beside her. Sometimes the gesture may be a tap on Rob's head after she's just handed him a hat indicating she wants him to put it on. Sometimes the gesture may be gently pushing you in one direction as she is 'telling' you to come with her. Sometimes she cups her little hand around your chin to turn your head in her direction because she wants you to look at her or she has something very important to show you. The gestures are little tugs at our heart that make us smile with pride because she has found a voice through her hands; and quite frankly, because she can do it at all.

On the other hand, kids don't view Oia's gestures the same way. I respect that. Preschoolers are very egocentric and most have little to no room in their world for others. This is why sharing is so hard for preschool aged children. However, being egocentric is age appropriate.

Which leads me to this...
I picked Oia up from school today and when she saw me her faced washed with relief and she began to cry. She threw her little arms up and wanted me NOW. She pointed to the door and uttered a "go, Mommy, go" through a couple of tears. Not the same face I got on Monday. She wanted to go home. Her teacher told me that she began to get a little fussy about 30 minutes prior. Then, she proceeds to tell me that Oia has been "touching" kids a lot. So excuse my indecent mind but I asked, "What do you mean by touching?" She tells me Oia has been pulling on kids, tugging on their shirts, and even "annoying" them and specifically shares with me two classmates who had had their fill of Oia today. I was frozen for a minute, not really believing that she was having this conversation with me. Then, she tells me that if Oia does this type of thing to the wrong kid, she'll end up getting hit (I think the word she used was "decked" but I'm not certain as her words made me numb for a moment.)

Really? I wanted to say in reply Did I really hear you correctly? Here's a news flash for ya...My daughter is trying to socially engage herself in a new environment with new people, without the help of people she knows AND without the appropriate language skills to do so. She is doing the best she can. In Oia's world, pulling on a classmate translates to "Hey, come play with me!". What's so wrong with that?

And the kicker in all this is that I specifically mentioned in her IEP meeting last week how Oia communicates through gesture and that I was concerned how her peers would perceive this. They assured me this was typical behavior and no big deal in this classroom as teaching social skills was a major focus in preschool. So, I expressed this fact prior to school starting and she still had the audacity to bring it to my attention today on only the 2nd day of preschool and act as though this is a major problem. The part that has made me sick all day is that apparently they are not allowing this behavior. They tell me that Oia gets very hurt and cries when they tell her "No". This equates to Oia as not being allowed to talk her classmates because essentially talking is what she is doing through gestures.

I'm upset. Actually, it makes me sad for Oia. She is in a classroom where differences should be embraced, not punished. I can guarantee Oia has NO IDEA what she is doing wrong, and truthfully, it's not wrong. There are many ways to communicate and I would hope that any adult working in Oia's classroom would take the time to turn such a situation into a teachable moment for the classmate that is being "annoyed" and let this be a time to teach compassion. Inform peers that Oia doesn't 'talk' like everyone else and she is trying to play too. She is not trying to hurt anyone but instead being curious and hopeful to make a new friend. I also would hope that the adults are modeling the desired behavior by providing the words that Oia should use instead during these interactions rather than tapping one's shoulder and "annoying" someone.

This is a special education environment. Oia's only means of communication shouldn't be an issue on Day 2 of preschool. Maybe in Kindergarten or even later, yes, but not right now. I feel a meeting is in order.

Monday, August 16, 2010

Big Day

Today was THE day. Oia and I woke early and had our morning staple of yogurt and cartoons while cuddled on the couch. Then, I quickly dressed this big girl of ours in her new preschool outfit, braided the piggies, snapped a couple first day of school pictures, grabbed her tiny backpack and lunch box and on the way we were...all the way to C Elementary for Oia's first day of preschool. Daddy even left for work a little later than usual to send us off and to wish Oia a good day.

We arrived at 8. Oia was the third kiddo to arrive. I carried her in and knelt down by the little table where her teacher was seated with the two other kids. Then immediately Oia's sixth sense kicked in and she buried her head in my shoulder and held on for dear life. She knew I was leaving without her. Out came the bottom lip, her face turned red and she said a very soft and pathetic "no". I assured her I was not leaving just yet and asked her to sit at the table to play with the Play-Doh. She did. Ms. J handed her a ball of yellow Play-Doh and Oia said 'thank you'. I handed off all the classroom supplies that were requested to the assistant. I passed on her lunch box and backpack and whispered to the assistant that there was a binki in Oia's backpack should the morning get rough...you know, just in case. Oia tapped on the seat of the chair next to her as her way of telling me to sit beside her. My years of teaching taught me that a lingering drop-off is harder than a quick one, so it was best I not sit down. She began to play again with her Play-Doh and then I kissed her forehead, told her I loved her and left moments later when she wasn't looking. I felt a lump well in my throat once I left the room because I felt like I had just abandoned my daughter but the tears stayed at bay. I drove back home feeling proud; a little lonely, but proud.

I anxiously returned after lunch to pick her up. Ms. J said Oia had a good day. I was relieved. She told me Oia did get a little upset after she realized I left her this morning but she recovered quickly. This is the face that greeted me the very moment I walked into the classroom for her pick-up...

She may not be able to 'tell' me all about the events of her day but this face told me all I needed to know. It was a good day indeed!

Saturday, August 14, 2010


We're trying. We're really, really trying to get this girl back on her feet yet again but it's no easy task. However, it is easier when Rob and I tackle this as a team. I spent this past week trying all I could to get Oia up and moving on my own (while Rob worked) and by yesterday I questioned whether I needed some mental counseling. I was drained and I'm not ashamed to say so. I mentioned Oia just flat out refused for me and I debated if she really remembered how to walk at all.

Bottom line: The casting recovery and then the immediate sprain have collided and combined to create a huge setback. We have resorted back to the very beginning, to the days of cruising and providing maximum assistance with each step she takes.

We have found that she is more willing to take steps when we removed her from the comforts of our home. Home is home and it's no biggie for her to flop to the floor and crawl around but a public place isn't as welcoming that way. So today, off to the mall and park we went.

Fortunately, the mall's indoor play area was not too crowded. She did cruise along one of the play structures but only for a couple of steps. Then she got mad. Since causing a scene is not my thing, we left to fill her belly before returning for round two. Second attempt was better and we were able to keep her on her feet for about 20 minutes. That's 20 minutes more than she had been on them all week. We're calling it progress.

Then, we took her to Build-a-Bear where she could cruise along the stuffed animal bins. This was successful. She moved SLOWLY but she was on her feet nonetheless. Again, we're calling this progress. She cruised and pushed a toy stroller around with our support for about 20 minutes then it was time for a break. We headed home for lunch and nap.

Once she woke from her nap, we took off to the park. There is a paved track where I thought she could push her baby buggy as a walker. She pretty much refused that idea at the start. Again, wanted to flop to her knees and cry. So she swung for a bit and smiled again before we convinced her to walk to the ladder and slide.

In this video, you'll see how I'm supporting Oia on her right side by holding her right arm per PT's advice. The gentle pull I give her is forcing her to put some degree of weight on her right leg. I am giving her quite a bit of support and you'll see her right leg give as she steps forward with Lefty.

Rob and I think that Oia is partly shy of her own legs at this point, meaning she doesn't fully trust them which may explain some of her reluctance to stand and walk again. She has experienced a lot in the last month or so and we can't say that we blame her...but walk on Sweet Girl, we've got you.

Friday, August 13, 2010

Damn Sprain

Rough week. Oia still is not walking since her ankle sprain incident last Saturday. In fact, she basically is flat out refusing it. She may stand when helped to her feet but she bears no weight on her right leg at all and stands crying for help. Any attempt to make her walk is under great protest which results in a fussy Oia flopping to her knees to crawl. We've spent a week trying to work her through this but to no avail. I've hit a wall and feel completely helpless. This is not what I envisioned for her first day of preschool.

Good Bye EI, Hello Preschool

Today marks the official end to Early Intervention; our life of 2 1/2 years, because birthday number 3 is quickly closing in. We have been profoundly fortunate to have had all of Oia's therapies provided within our home (aside from hippo of course) since Oia's diagnosis at 7 months old. EI has kept us above water and provided crucial support during some of our most difficult times. Our schedule of 4 PT, OT, and ST sessions combined in a week is now over but we're onto a new and better chapter called PRESCHOOL.

I had an IEP meeting with Oia's school on Wednesday. The IEP team (Oia's teacher and all three of her new therapists) have been easy to work with and have made the transition into preschool a seamless one. The teacher that we met back in May while we observed the class during school hours is not the teacher there now. My first meeting of the new teacher was on Wednesday and my gut told me this teacher is going to be a good fit for us. I am comforted to know that not only does Oia's new teacher have many years of experience but she too has a daughter with special needs. To have someone understand the boat you're in makes all the difference in the world because to really know this life is to live it.

The safety concerns that I raised after my May observation of the classroom were addressed right away. I shared again through a voice that shook that I had to be absolutely certain that my daughter who lives in a wobbly, often unpredictable world would be as safe as she could possibly be while navigating around her classroom. I was informed that the room had been worked on and I was invited to take a look for myself once we concluded the meeting.

This time, the classroom was like a breath of fresh air. It was neater, brighter, more organized, and overall much safer. It looked like a classroom should look.

Oia will attend preschool on Mondays and Thursdays and will stay through lunch. Monday, the 16th will be her first day. She'll receive OT and PT in some form both days and ST will be provided as well. In addition to the services she'll receive at school, we will continue to see our current PT but sessions will now be held at the therapy center. Oia's PT is too good to let go and she will continue to do CME with Oia. Hippotherapy will resume after Labor Day.

So, Good Bye Early Intervention; thanks for being our life saver. Hello Preschool; take good care of our little girl.

Tuesday, August 10, 2010

Ortho Appointment

The outcome of today's ortho appt is ultimately good news; Oia has a soft tissue sprain at the right ankle. Having the words sprain and good news in the same sentence just does seem right but it certainly is when your ortho doc sends your daughter upstairs to x-ray because he suspects a possible break. So, yes, a sprain is good news.

The not so good news is that she is still not willing or able to walk on it yet. Today is day 3 since the fall and sprain happened and she just tonight pulled herself to stand but only beared weight on her left leg (holds right leg just off the ground) and flopped to floor to crawl again after being up only for a minute. Nonetheless, we call this progress.

Sprains slowly heal on their own but I'm praying for a quick recovery as this little girl starts preschool in just one week. It would ease my momma heart significantly if she was back to her normal self by the time I had to say good-bye and drop her off for her first day of preschool.

The knot on the back of Oia's right knee is believed to be a Baker's cyst. It's not an uncommon cyst and has several causes. Oia's is more than likely caused by the irritation and strain her knee endured during the casting period. There seems to be no apparent need to stress over this as ortho doc said it should dissipate on it's own over time.

We left the appt today with a script for a pair of compression socks. Oia has always had a puffy right foot since she was an infant and often times it is even a lovely tint of blue. She will only need to wear one on her right foot but hours worn in a day is unknown at this point. We finally convinced ortho doc that Oia would benefit from the use of a compression sock since her right foot and toes were barely swollen at all while in the cast and swelling remained at a minimum for a couple of days after removal. It's just one of those CP things we deal with, mainly a circulation issue in her less dominant extremity. I will be calling tomorrow to schedule an appt for her foot to be measured so a good fit can be ordered. Let's hope they make these things in pink.

Sunday, August 8, 2010

Another Setback

After finally getting back on her feet and basically learning to walk again with newly stretched muscles after being casted for two weeks, we are now experiencing another setback. This time, the setback has left Oia off her feet COMPLETELY.

The setback seems to have come in the form of a fall, but we can't be sure. We spent our Saturday afternoon playing at Bounce-n-Play with our friends who were visiting us from NC. A good time was had by all until Oia missed the last step in the toddler play area and came crashing down quicker than I could grab her (and I was standing RIGHT. THERE.) It all seemed to unfold in slow motion. All I noticed was that she landed sideways and hit the side of her head HARD on the floor which was accompanied by a loud thud. Screaming and tears ensued. I immediately scooped Oia up to comfort her but she was stiff and arching her back as if she was in great pain and she was clinching her hands into fists which is not something I've ever seen Oia do after a fall. Her behavior conveyed to me that she got seriously hurt somewhere; maybe even felt pain. Another classic example of why I long for my child to be able to communicate; I had to assume the fall hurt her head and nothing else since that's all I saw.

We decided at that point that it was time to go home, eat a late lunch, and put the little ones down for a nap. I carried her after the fall and all the way to the car. Since that fall, Oia has not walked. Not one step. Every time we've put her to her feet since then, she has lifted her right leg, winced in pain, and even cried. Something is wrong.

She was wearing her brace at the time of the fall so it's hard to believe that she twisted her ankle but I don't dare rule anything out these days. Thankfully, having a husband with medical experience provides me with comfort in questionable times as this but he doesn't have an answer either. We contacted Oia's ortho doctor later that evening and we'll be seen by him Tuesday. Until then, he has told us to keep her off her feet and nurse her needs. She is fine to play on her knees and crawl but that pretty much confines us to indoors for the time being.

Her ankle is swollen as well as her foot. However, this is not really a good indicator of injury for us since Oia's right foot is always puffy to begin with (it's just one of those CP things). Her ankle was warm to the touch today; much warmer than the left ankle. While checking her legs, Rob noticed she does have a small grape sized knot/ball located just under her skin on the back of her right knee. Makes us question whether this knot is a balled up torn muscle or portion of a muscle but ortho doctor says it may not be related to the leg injury issue but instead another issue to look at altogether (cyst, etc).

So, another setback...seems to be all we've been given around here lately. Here we go again....