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

Thursday, October 11, 2012

Appointments and Blogoversary


What a week it's been... appointment central. I'll start with our first appointment on Monday, which was just a standard follow-up with Oia's ortho doc. There were no concerns heading into our appointment and the visit with Dr. R was brief. Simply put, he was pleased with Oia's current range and mobility. Very pleased. We left with the orders to "wean her out of these braces" by only making her wear them during school hours. I wasn't sure I'd ever hear those words and I promise you that I never expected to hear them this soon if I ever did. I passively questioned our doctor's sanity by asking him if he was certain this idea wouldn't come back to bite us in the backside later and he said we just need to continue stretching and keep a close eye on things. Braces for school only... yeah, I'm still trying to process that one. Unbelievable really, and thankful too. We head back for another follow-up in 6 months.

The following day, we took Oia to visit with a Developmental Behavioral Pediatrician. Unlike the ortho appointment, we did have concerns for this one. A lot actually, all pertaining to Oia's attention span, or lack thereof. Here's the deal. Oia's brain is abnormally formed with a cleft which leads to an irregular EEG, to say the least, and the cause of her CP. We've known this since Oia was 7 months old. As a result, Oia's brain does not take in, process, and file information as a typically developed brain can. This irregularity causes our girl to struggle to focus and maintain attention in structured settings, among other things. The lack of attention is one of three areas negatively affecting her academic performance. Her cognition and language deficits complicate the situation. While none of this is new news to either Rob or I, we have still come to the conclusion, with our doctor's input, that medical intervention may be key to helping Oia overcome her attention deficits. It seems like an obvious and easy solution but the decision to medicate my child just so she can simply maintain in a structured environment, like school, is scary for many reasons. But like all else we have ever done with Oia, we weigh the risks and ask ourselves if this is worth a try. Oia will have a long and stressful school career ahead of her if we don't find a way to help her with these attention issues now.

So, we have a plan. If Oia's Neurologist clears us for the trial of a short acting stimulant (Adderall), then we give it try. The script must be cleared by our neuro first as Adderall has been known to lower the threshold for seizures in patients who are at high risk for them. My child falls under that high risk category. The idea to move forward, should we get a thumbs up from neurology, scares the ever-living hell out of me. If we get a thumbs down from neurology, we revisit with our developmental ped to discuss a Plan B. Right now we are currently in a holding pattern, hoping for a thumbs up and praying to God that whatever we do is to Oia's benefit. Emotionally, this one is a bit of a struggle for me.

And finally, today was Oia's referral appointment with Audiology. I mentioned that the hearing test she was given during her 5 year old check-up with our regular pediatrician suggested a referral. I suspected poor conditions the day of the test but thought it best to attend today's appointment just to be sure. And I was right... a few speakers and a couple obnoxious singing and dancing battery operated animals tucked in the corners of a dark examination room confirmed that Oia can hear just fine. She didn't miss a beat and was ready to get the heck out of there. So was I.

And of less importance, this week marked year three of Unexpected Lessons. I've hit "publish" 235 times since then. To date, my dashboard claims that I have had 99,964 visits, nearly 2,000 comments, and at least 98 regular followers. I have met some fabulous families through this tiny slice of cyber space and felt supported many times by even the smallest of comments. The emotional road one travels down after life post diagnosis is one not for the faint of heart. The road is hilly and full of speedbumps and potholes and absent of any road signs. But I'm a different mom today, much different than the one I was 3 and 4 years ago. I have a great teacher. She has delivered lessons that have thickened me. And softened me too. And transformed me completely. I like the person she has made me to be and thankful to call her my first Daughter. There's only one Oia Teaster... and I hope I'm around these bloggy parts for a long time to come because I know our family's story has only just begun. Good things are waiting and there's lots more to learn. To all who have ever dropped by for a second, third, or hundredth time, to read my mumble, I thank you.

8 comments:

  1. Happy blogaversary! Great to read Oia's updates. How exciting about her braces! Yay!

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  2. 1. You're welcome;
    2. Thank you;
    4. Ms. O. sure looks like her mother; and finally
    3. does your little Ms E. prefer swiss or cheddar?

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  3. I love to celebrate and what better thing to celebrate than the ONE thing I am addicted too...your blog! Yes, I admit, for 3 years I have clicked a button in hopes for a tiny slice of my best friend's world that helped to keep my heart happy and connected to you! You have a gift with words, a pure treasure for your girls, thank you for letting me tag along on this amazing journey!

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  4. HI MO.. THAT IS AWESOME NEWS HEARING THAT OIA WILL NO LONGER NEED HER BRACES.. YAH!! WAY TO GO.. SHE IS SMART AND NOW DOING VERY WELL PHYSICALLY THAT IS SUPER AWESOME..

    BOTH OF YOUR GIRLS ARE SO ADORABLE

    MELISSA

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  5. Happy Blog-aversay! Great post! I really enjoyed reading it. Oia is a beautiful child. I look forward to following her progress. If you are interested in getting more involved with the CP community, I encourage you to check out Cerebral Palsy Family Network. It's a great resource with all kinds of advice and support. Or families would love to hear from you and all about Oia's progress and adventures!

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  6. Keep mumbling-- I love reading! Your blog is bookmarked right next Suzanne's. :) I love the inspirational dialogue, the mama bear rants, and even the medical jargon (which I may not understand each time, but still read)-- long story longer, you're a great writer and a wonderful mother and I look forward to all your updates!!

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  7. Oh my goodness, that last picture is the sweetest thing I've seen. What awesome news that Oia wont be needing her braces except at school! Keep us updated on the possible meds for her. We'll pray for approval from neuro.
    And lastly, Happy Blogaversary!! Keep on mumbling girl! This is by far one of my favourite places to visit. I always look forward to your next post, so keep em coming!!

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  8. I love when you mumble - you do it with such ease and beautiful phrasing! Still waiting on that book you need to turn this blog into......just saying.

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