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

Monday, October 31, 2011

Halloween at UVa

Tonight, the girls and I met up with Rob on campus and then together we escorted our lil' 50's girl to the Halloween festivities on the Lawn at UVa. It's something we've done every Halloween with Oia since moving to Virginia 3 years ago.

Esme was less than thrilled to be there but Oia on the other hand was in Heaven to be getting so much chocolate. This year Oia seemed to understand the concept of Trick-or-Treat and the craziness that was taking place around us which made it a more enjoyable Halloween. She was eager to wear her poodle skirt, she said her best "trick or treat" when she was supposed to, and she even said "thank you" several times. She mingled and observed the organized chaos around us and said "me" on the way home, which is her pronunciation of "more". She LOVED it.

It took some convincing for Oia to walk away from the stroller and mingle a bit. She was very concerned about leaving Esme.

But once she did, she stumbled into her twin.

And Hulk Hogan...

Poor Esme missed most of her first Lawn experience, but at least she was warm.

Happy Halloween, everyone!

Saturday, October 29, 2011

Oia Ramblings

Our biggest Miss is changing right before our very eyes. She still has a way of making us shake our heads, grin and chuckle, and then shake our heads some more. A handful. Pure and simple. And we wouldn't want it any other way. But keeping up with Oia while marveling at the growth and development of our little Esme has left me little time to sit here and ramble about all the fun and wonderful things that are happening in the Teaster house.

But I must make time... allow me to ramble.

Progress is happening in the potty department. Oia is finally starting to show a consistent interest in using the toilet. And with that, it seems like she is gaining better control of "letting go". It's still very much an effort and requires great concentration but it's happening. And just this week, she requested to use the potty by saying "pee-pee" as I was getting her undressed for bath time. A first. Slowly, we're moving in the right direction.

The Teaster house is finally binki-free. And I kind of feel bad about taking away something that is so near and dear to Oia's heart but it's time, maybe even past time. The girl has been a binki lover since the day she was born. And really, so have we. Binki's soothed our girl to sleeping through the night at a very young age and offered comfort in the most stressful of times, from those early and tough EI therapy sessions, to hard tumbles and scary doctor appointments, to post surgery aches and pains. But I knew the process had to be a gradual wean. So since age 3, Oia has only been allowed to have her binki while sleeping or while riding in the car. But when we traveled to Ohio earlier this month, I told Oia the first night that there were no binki's in Ohio and actually, she handled it rather well. She was a little confused but went with it. Once we returned home, I rid her bed of binki's and it's been no problem. She's over it. But thank goodness for the other item of comfort, her Tinkerbell blankie.

One of the recent notes from Oia's teacher read "Oia loves to talk about her family." My heart smiled. I know Oia especially loves having Esme around. She introduces Esme to anyone and everyone, even if they've already met her. For example, each morning we waltz into her classroom with Esme in tow. Usually, the first word out of her mouth for all to hear is a loud and repetitive "Ah-may", her best attempt at pronouncing Esme, and she leads anyone she can by the hand to show them "Ah-may". This announcement and introduction of the littlest happens everywhere we go. Today she introduced Esme to the girl at our grocers checkout counter and Esme wasn't even with us. Proud she is of her sis and Esme is a lucky girl.

Seems like every assessment we encounter, we are always asked whether or not Oia can dress herself. The answer is no. At least not independently. But these days, Oia is trying and often insisting on dressing herself (or at least having control over the clothes). Some attempts have been successful. It's okay that the shirt may not even be hers and way too big, or on backwards, and plucked from the dirty clothes pile. Hey, a shirt on is a shirt on. She's still quite proud of herself, regardless. And so am I. As would any OT be.

I'm sure Rob and I will always be persistent that Oia uses her right hand, or at least try to. We are generous with verbal cues but mindful to not bark too much. It seems that the new flexibility she is experiencing in her right leg post-surgery is allowing her some ease to relax other parts of her body as well, namely her right arm and hand. It's only been since then that we have witnessed her using Righty as the stabilizer, or helper hand, for some of the most basic daily activities; such as holding paper to write or cut, and stabilizing bowls to eat, etc. The feeling I get when witnessing this equates to the skies parting and the angels singing. Really. It's exciting stuff.

Expressive language. (sigh) The subject weakens me. It is coming along but at a snail's pace and it's not for the lack of trying. Oia works so hard. We work so hard for her. We have great ST's. But there is only so much we can do. The rest takes time. But with that said, Oia has many new CVC words under her belt. Mostly but not all, CVC words that end with a /t/. Do you understand how awesome it is to put your child in the bath tub and then hear her say "hot"? Or "eat" when she's hungry? It's amazing what just two words can do to help eliminate so much of the guessing game I play every single day.

And finally, Oia had her 4 year old check up recently. She is in the ball park of 33lbs, with her shoes and brace on. A skinny little thing. She's 3ft, 4in tall. But these are all just numbers... I'm just happy that she's happy (and growing!)

Wednesday, October 19, 2011

Ohio Visit in Pictures

Here is a long overdue picture recap of our Ohio visit earlier this month. Visits with GG, NeNe, PawPaw, Aunt B, Uncle Brent, Mamaw, and other loved family members don't come often enough for our little lover. Oia adores the company and the swarm of those who love her most. And she proudly got to introduce her little sister to those meeting Esme for the first time.

One of those people would be GG, Oia and Esme's great-grandmother:

And the funny guy, their Great Uncle Paul:

Mamaw enjoyed warm snuggles with Esme:

The girls had an evening to play with cousins, Dani and Ellee:

And pretty much what Oia wanted to do, she did. Like drive around the yard with Uncle Brent:


And even on the lawn mower with NeNe:

Aunt B's lil' project partner:

We visited with other Aunts and more cousins as well but it's hard to remember the camera for every detail these days. I didn't realize until after our return that somehow my Dad escaped the camera. I'll be sure to remedy that when we meet again for the holidays. But overall, a good time was had by all.

Having some place to go is Home.
Having someone to love is Family.
Having both is a Blessing.

Thursday, October 13, 2011

No Hands

Stepping up and down steps, with body/hips square and without hand holds is something Oia practices every PT session. In fact, this has been such a focus for so long now that I really can't remember when we started doing it. In PT, Oia must step up or down a wooden square box, roughly 7 inches high, which amounts to the average step in a home, small curb, etc. The small surface of a box makes for a less forgiving step since the footing must be precise, narrowing the base of support. In other words, no wide stepping, no stepping up sideways, etc.

In recent sessions, Oia has been stepping up and down the therapy boxes very well and multiple boxes/step up and downs in a row... a little obstacle course of sorts. It's exciting to see.

We recently spent 5 days in Ohio, staying at my parents house. There is a step in their home which equates to the same height of step used in therapy. It's even more exciting to see the hard work from session carry over into "real life". The video below captures successful, hands-free step ups but she wasn't so tolerate of me trying to get a step down video (but she could do it!!)

This was the first stay at my parents house where I didn't have to follow her every move in fear of her falling. She roamed freely around the house, coming up and down as she pleased. It's obvious progress and it makes me so thankful for our girl who works hard and for the PT that pushes her to do so.

Wednesday, October 12, 2011