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