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

Saturday, January 30, 2010

Growing Stronger with CME

Oia has been practicing CME (Cuevas Medek Exercises) since August. The moment I saw her engaged in this therapy, I was hooked and became an instant believer in this method of physical therapy. The method, or theory behind the exercises, makes total sense to me. In just 4 sessions of CME, we saw immediate results; noted not only by Rob and I but by both PT's who were initiating this therapy with Oia.

Oia has been receiving PT since she was 7 1/2 months old. Progress was sloooooow (or at least felt that way) for the first year of PT. Understandably so as it takes a lot to strengthen a body that has been weakened by cerebral palsy. We did a variety of weight bearing activities, core strengthening and muscle building exercises along with specific movements to help trigger Oia's protective responses (which she almost had none of). We realized how important these activities and skills were as they are the foundation for sitting, crawling, and walking and any other movement for that matter. However, once Oia began CME in August, she began to walk, with close supervision only, in just a matter of 3-4weeks. Granted, the new mobility came after a year of hard work and therapy that got her to that point but CME tapped into her central nervous system and quickly brought her mobility to the next level. I swear it felt instantly. I wanted to find a way to stand on top of the world, with the biggest megaphone I could find, and shout to all the world about this therapy. Really. The wonderful thing about CME is that it can be adapted for ALL abilities.

Currently, Oia gets PT 2x/wk. Each session is an hour of CME. It's very intense and orthotics are not worn during the sessions. The equipment is fairly simple but can be configured in many arrangements to target specific areas. Our biggest focus for Oia right now is to help her to stand as straight and tall as possible (left leg supports most of her weight). Her right knee/leg tends to bend inward, or cave in, because the right side of her hip is tilted below the left side of her hip. It's complicated but Oia is making subtle improvements to her stance.

The first video is Oia on what I call the double balance beam. It is set up to 'rock' back and forth with each step. This 'rock' creates a more challenging surface that forces her to shift weight evenly from side to side. The hand placement of the therapist determines the level of support for Oia; the lower the hand placement on Oia's legs means the less support she receives thus making Oia work harder to remain balanced. She tolerates this exercise well.

This exercise is another way to challenge Oia's weight shift and balance. The wobble board teeters with each step which again, forces Oia to make body corrections to remain balanced. Note the lower hand placement from our PT.

Last video is the same wobble board but in a stationary position this time. The board is placed on a tilt and covered with fabric that allows Oia's feet guide over the surface. Again, just another way to hone in on balance and weight shifts. You'll notice Oia's arms extended in front of her as she kind of jerks or catches herself when she feels her balance is in jeopardy. This 'catching' is exactly what we want to happen.

Way to go, Oia!

(I realize that there are many forms of therapy out there and what works well for one child may not necessarily work the same for another. I respect that. As a family searching for therapy, you have to do what 'feels right'. If, however, anyone is intersted in learning more about CME, you can start at www.cuevasmedek.com)

Monday, January 25, 2010

Righty Update

It's been almost 3 months since Oia completed her second Constraint Induced Movement Therapy (CIT). In the last month, maybe two months now, we have seen the use of her right hand dramatically increase. The increase is worth noting because not all of the use comes after verbal prompting from Rob or I. Granted, we say 'where's Righty' and 'use two hands' what feels like 10,000 times a day but recently the spontaneous use of Righty has greatly improved. In fact, I have very recently made the mindful decision to not give her as many verbal cues as I have in the past for mainly two reasons.

One reason is no one likes being barked at, no matter what age you are, especially by your own parents and two, she is becoming comfortable enough to use it on her own and I want her to feel that success as something she does without my influence. Sure, I still remind her when I feel it's important but not nearly as intensive as I used to.

She still has been wearing the home cast on her left arm for OT sessions and that works well, as long as she is in the mood to please us by wearing it. Generally, she wears it for at least half of the session. I, along with her OT, have noticed that Oia is voluntarily playing with two hands these days. It is still obvious to any stranger that Oia is left arm dominant but she does grab for toys with two open hands which is a beautiful thing. Now, she almost always will drink from her cups and sippies while holding on with both hands, no prompting. She grabs for her babies using two hands and when handing her two objects at one time, she will reach for both objects with both hands open. Also, when climbing into a chair or onto the couch, she reaches with Righty to help pull herself up. This is so encouraging to see. That is exactly the goal we are trying to accomplish...we want her to learn that Righty will be her 'helper' hand in life. We hope that one day Righty will stabilize the paper while she signs her name with Lefty and that Righty will hold open her purse so Lefty can dig deep into it. To say she has turned a corner, though, where Righty is concerned is probably a stretch as we still have a long way to go, but she is definitely making great strides in the right direction. It's all very promising since there was a point in her life when she disregarded that arm completely.

Thursday, January 21, 2010


Each day brings progress. It may not always be obvious, and sometimes Rob and I think we are the only ones who notice it, but progress is there if we look hard enough or take the time to reflect on where we've been. I remember the days, not long ago at all, when it felt like months, or even longer, between each one of Oia's new accomplishments. Oia has taught us to appreciate movement, movement so simple yet so complicated. We have celebrated (and still celebrate) everything she does.


We cheer while she is playing in the dog bowls, as long as Righty is the culprit. We smile when she splashes in her spilled juice because she's splashing with both hands. I laugh as she walks away with my neatly folded laundry because she is actually on her feet and walking. We clap when she pulls the cap off a marker or pen because she has gained the strengthen and accuracy, not to mention the coordination, to do this using both hands. And if one day she writes on the wall...so be it. Another one of those 'unexpected lessons' taught by our 2 year old...there are other things in this life far more important to worry about or get upset over and these seemingly small things are not. In our world, they are worth celebrating and so we do.

Even when she sneaks away to climb up (by herself!) a 2 leveled step stool at the bathroom sink, turns on the water and presses her hand tightly under the faucet to soak herself and all that is within 5 feet of her....we still celebrate because this is progress.

Wednesday, January 20, 2010


Unexpected Lessons was posted today on Kidz; an inspiring website for those who have been blessed with a special needs child. Thank you, Tara, for asking Oia and I to share our story with you and the rest of the world. We feel honored.

Wednesday, January 13, 2010

OT at Build-A-Bear

Despite Oia feeling a little under the weather, we continued with our plans to meet at Build-A-Bear today for our weekly OT session. It's safe to say that OT is Oia's least favorite of all therapies so her OT and I are constantly trying to come up with ways to make the sessions more intriguing and therefor more fun for her.

I took Oia's cast with me (which we make her wear for at least half of each OT session) and the plan was for Righty to do most of the bear-making. We started by giving her a couple of animals to choose from. It's no surprise, because we always end up doing things a little differently anyways, that she chose a bunny, not a bear. Good choice though since the bunny has long ears which are perfect for grasping, one ear in each hand.

This was my first Build-A-Bear experience and oh, the choices! First up was to pick out a sound to stuff into Oia's bunny. We put Oia on a chair and let her kneel at the sound kiosk to push various sound buttons with Righty. Although she can generally grasp and maintain a grasp with Righty, applying enough pressure to push buttons with that arm/hand for some reason is still very much a challenge for her.

Oia chose lullaby music (with mommy's influence) to stuff inside her new bunny.

Next up, time to give Bunny a heart. The hearts were the perfect size for Oia to grasp but not the perfect weight and she had a hard time keeping a hold on it. The hearts were way too light for her to feel with Righty as I imagine the sensation in that hand is different than her left. Objects have to be 'just right' for Righty so this part was a little tricky; she dropped it a few times but eventually Bunny got a heart.
Now, onto the stuffing. The worker at Build-A-Bear was kind to let Oia use the lever to activate the stuffing machine as opposed to the foot peddle. (He thought we were trying to get Oia to be 'right handed' instead of left handed, as if she had a choice, then shared a story about how his son was both right and left handed. I didn't have the energy to educate today so I smiled and let it roll. He meant no harm.)
Ms. Brenda helps Oia stuff Bunny.

Onto a thousand more choices...what in the world is this overpriced creation going to wear? A comfy (cheap) t-shirt, of course.

Oia and Ms. Brenda get ready to dress Bunny.

But soon after, Oia found a dress that apparently she felt Bunny needed instead of a t-shirt but we left that there for other bears and bunnies-to-be. Although she did pull it off the rack with Righty...

And then after all that, it's time to make a birth certificate for the new creation. Oia loves to type, er bang, on the computer so this held her attention for a short while longer. Touching computer keys is a great way for us to help her isolate and use her pointer finger (which she still can't do yet even with her left hand). I'm not worried, we'll just keep working on it.

And Oia's Bunny; the final product of a successful OT session at Build-A-Bear.

Thursday, January 7, 2010

The Good with the Bad

I threw the milestones and growth charts out the window as soon as I realized that none of them pertained to us. I made up my mind that as long as Oia grew, along her own curve, that I'd be happy with that. I also made up my mind that as long as she gained strength and progressed in global development, in some form, no matter the rate, that I'd be happy with that too.

In the beginning, it was her smile and even a laugh. Those giggles and smiles were huge to Rob and I and let us know that someone was really 'in there'.

Today, she's two. She has come a very long way. And, I'm tickled to share that she had her very first public 'meltdown' yesterday and it made my heart smile. I had to look at the elderly man who was entertained by Oia's behavior, smile at him and say, 'Behold, she's 2!" It felt good. I've waited a long time for that to happen and no, I'm not crazy. She's 'in there' and she has a lot to say but she just can't verbally get it out.

She has had some mild meltdowns recently but only while at home. She's easily crushed now by being told 'No!' or when we take something away from her that she shouldn't have. She'll come to her knees and lay her head on the floor and start to cry. The whole 'meltdown' only lasts a few seconds or at least until we can redirect her focus onto something else. These meltdowns or tantrums, no matter the severity, have the power to make most parents cringe, sweat, yell, drink, and even cuss on occasion. But for me, I smile, I nod my head and think, "That's my girl!" I love it. THAT'S WHAT 2 YEAR OLDS ARE SUPPOSED TO DO! We have an opinionated little girl on our hands who is beginning to enter the "Terrible Two's" stage. We've hit a typical milestone, for the very first time, and it feels so dang good. So normal.

I can take the bad with the good, or is it the good with the bad? Whatever it is, I'm embracing it, calling it a blessing and will savor every last moment of every 'meltdown' that is bounced my way.

And I won't even cuss.

Monday, January 4, 2010

Holiday Photos

We are home again. We are pleased to announce that our ride back home to Virginia from our holiday stay in Ohio was rather uneventful and took only 8 hours as opposed to 30. Thank goodness.

We divided our two weeks in Ohio evenly among both families; one week at Rob's mother's house (aka Mamaw) and one week at my parent's house. We returned home January 2nd. Our visits were nice. It's a treat for Rob and I to visit with family but even more of a joy for us to see Oia build relationships and laugh with her cousins, aunts, uncles, grandparents and great-grandparents. A good time was had by all.

She loved playing with her cousins. This picture was a frequent occurrence at Mamaw's house. Oia and her cousin Colton were often caught sitting on the kitchen floor eating her favorite snack...good ol' potato chips.

Cousins Callie, Oia and Colton on Christmas Day with new balls from Mamaw.
Oia with cousins Ellee and Dani who came over for a playful visit.
Oia and Grandma enjoy some dinner together.

4 Generations
Oia with Mamaw Teaster, Daddy, and Great Grandma Botts on Christmas Eve

Oia hanging out with the funny guy, Great Uncle Paul.

And last but not least, Oia with her Great Grandma Richter.
Special times. Thanks for a lovely visit...we love you all.