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

Sunday, March 13, 2011

Things To Look Forward To

First up, a new brace is in order for little Miss. It's that time again; her foot grows tight inside that molded piece of plastic that was casted for her nearly 6 months ago. We always know when it's time. Her foot becomes reddish-purple and puffy and the fit is off and tight.

Earlier this week, Oia attended a clinic/informative workshop held at her prosthetist's office for local therapists to learn more about KiddieGAIT bracing. She was invited to come as a model for the event where she demo'd one of these braces to test whether this style would prove beneficial to her mobility needs. In a room full of strangers, she walked back and forth between Rob and I as therapists and other professionals observed her stride and gait while wearing the KiddieGAIT. We all liked what we saw - I even heard the lead gentlemen say "Wow, I have goosebumps" when he saw her first steps in the new brace. We will be getting one very soon and I'm so very, very excited and thankful to have tested one prior. More to come on how the brace is different and more beneficial once we actually have it.

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Changes are coming our way in the speech department. Some days I feel like letting nature take control by just allowing Oia's speech to progress naturally, with not much pushing. Other times, I feel like gathering all the interventions I can to help facilitate her language and all the potential she brings to the table. Perhaps it's the baby growing inside me but I'm feeling the need to do all that I can NOW before life gets crazy again. So, I scheduled Oia for a speech eval at Kluge in hopes to begin ST services there very soon. Preschool ST is just not going to be enough and my thoughts race to summer break when we have a major lag in all therapy services. In a nutshell, the eval offered no surprises although I have to admit that actually seeing and reading a four page speech and language pathology report of what your child can't do is still quite painful. Knowing is one thing but reading it in stark black and white is a totally different story.


Here is what the eval measured:
Expressive language scores: Standard score 59
Receptive language scores: Standard score 76
Average standard scores are 85-115, with a score of 100 being the mean. Oia's performance on the receptive language portion is more than one and a half standard deviations below her peers. Her performance on the expressive language portion is more than two and a half standard deviations below her peers.
Ouch.

I remind myself that this was an assessment of just one hour, conducted by a complete stranger, with a three year old crammed in a 10x10 room who had little interest in the activities that were expected of her. Assessments and evals can only measure so much and Oia is more than measurable statistics, although I realize we have a lot to focus on. We move forward with private ST 1x/wk for the remainder of the school year, beginnning on the 17th, then 2x/wk during summer break. I have high hopes for her progress.

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Cerebral Palsy of Virginia is hosting their 18th annual 5K on March 26th which we are excited to be participating in with Oia. If anyone would like to contribute to CP of Virginia via Team Teaster, it would be greatly appreciated by the deserving individuals who rely on these funds to help alleviate medical and financial burdens they face living with CP.

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And last but not least, I'm officially half way there - nearly 21 weeks pregnant. I'm feeling much, much better and getting much, much larger. The 22 week ultrasound is scheduled for March 23. We've decided to take a peek this time around at the gender of this little being but will savor the "surprise" until birth day. I'm praying like mad that all appears normal on the ultrasound although I know full and well that that is only half of the picture. I shall keep you posted.

3 comments:

  1. Wow! Lots going on around there! I can't believe you're already half way there! I'm so excited. Girl girl....I'm SO thinking girl. :D
    I'm sure Oia had everyone in awe as she walked back and fourth in her brace. How cute she would have been!!
    And the language thing...ugh...seriously...what could an hour tell a complete stranger? I cancelled Hanna's appointment because of that reason. You know more than anyone what she's capable of, and I wouldn't let that test put you down at all. Just wait til the baby comes! She'll want to just talk and sing to that baby. :)

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  2. Hooray for half way, right? I'll be 21 weeks on Friday. I'm also worrying about getting it all done while simultaneously getting slower and slower and less able to get around. It's tough on my heart, for sure.

    I could go on and on about those tests, but I'll share a little tidbit and be done. I had a student who thought she was smart. Her IQ scores put her at the absolute bottom of normal intelligence levels. Still, no one told her and her grades were phenomenal. It's amazing what a kid can do when we don't put limits on them.

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  3. How busy you are!

    I take a lot of these tests with a grain of salt. Parker continuously bombs his hearing tests. Yet, even in another room, he can hear his Dad's voice when he comes home.

    He's hearing is just fine I believe. He just isn't into performing on demand so much.

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