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

Tuesday, February 28, 2012

Bits and Pieces

Oh, how I miss this space of mine... I hope the feeling is mutual. I wouldn't call this my best post ever but it is my best attempt at letting everyone know we are here, staying afloat, and trying to savor all the crazy details amoung the chaos. Here are some bits and pieces of what's going on around here...

Oia had been sick for all of last week and demanded a lot of monitoring and TLC to make a full recovery. Therapies and school were a no-go all week long. Whatever the illness, it rendered her fatigued and couch ridden with a fever for 3 days. It's taken a number of days after that for her to find her normal again but yesterday she woke up smiling, and in a delightful mood, so we can say life is good again. Now it's Esme's turn to battle the mystery illness. I'm new to having a coughy, raspy, feverish baby and it's a pitiful, worrisome sight. Oia never even got the sniffles as an infant... perhaps we can say that's because she never had a big, preschool sister hovering over her every move. I do hope our tiniest Teaster gets better soon.

Aside from trying to kick the yuckies in this house, we are trying to tackle some um, let's just say undesirable behavior as well ~ from our biggest Miss. We believe most of Oia's outbursts are the result of a mixture of things but regardless of the reasons, it is still not cool with us and we make no excuses. Her frustration can quickly turn into biting, scratching, or hitting someone. If she becomes frustrated with a toy or any other object, she'll launch it and let me tell you, the girl has a dangerous arm. All ill actions land her in time-out immediately. Some days, she never sees a time-out because she's an absolute angel. Other days, it seems she lives there with horns atop her head. And those are the days when it seems like the whole world and everyone in it is standing on my last nerve and leaves me questioning my success as a mother thus far. It's a phase (I hope) but it's still not settling well with me. I could live without this particular parental challenge as we have enough challenges without this one. Maybe the "terrible two's" are finally catching up to us at 4... but Lord, have mercy. It seems to be my daily motto.

We took the month of February off from private ST. I sensed Oia was getting burned out with the same activites each session and her attention span (which already is that of a gnat) was growing shorter and shorter by the session. Quality is always better than quantity in my book so hopefully when we resume ST in March, it will seem fresh and new again. Breaks are nice and we all need them from time to time. Even when you're just 4.

As most of you know, growth is a bittersweet word when your kiddo has CP. Growing bones make for tighter muscles. Tweeks and changes to Oia's orthotics must be made along the way to minimize the compensations she makes in her stance and gait pattern. Her walk is constantly evolving. Oia's left leg has been brace free for (I believe) about 2 years now. She currently wears an SMO and KiddieGAIT on the right only. In recent months, we have been monitoring the inversion of her left foot, due to the tightening of a muscle aside her calf area. At our last appointment with the ortho doctor in January, we all agreed it was time to support the left foot with an SMO. We picked up the new brace today and Oia seems to carry on with it just fine though I imagine it feels a little odd to wear a brace on a foot that has been free for so long. I don't own a crystal ball but I'm willing to bet that lengthening surgery for the left leg will be a topic of discussion at some point in her life but for now, the new SMO should do the trick.


  1. Timeouts, tantrums or perfect days .... you and I are definitely in the same universe with our preschoolers. Trust me - they still love you when it's over! It's what gets me through the next one. You are still the Mom I wish I could be! Love you!

  2. Beautiful girls!! Oh they make me melt.
    Oia? Tantrum? No way.
    Sweet girl. Hanna has days like you described. She hits, and pulls hair. Some days, she an angel, and others she lives in the corner on her knees. Feel blessed that you have a child capable of having tantrums. :) That's what gets me through them.
    Sweet sweet Esme! I hope she's better soon! Hailey has been sick enough for all of my girls combined. Hanna never had even the sniffles as a baby either. She was 2 before she had her first fever. Hailey catches EVERYTHING.

  3. First, thanks so so much for posting the stuff on visual clutter. I had not heard that term before and it sounds SO much like my Sammie B as well. We also just heard a movement disorder specialist (neurologist) speak on movement disorders in general and he said that the eye movements are almost always tied into the movement disorder in weird, hard-to-understand ways (he said he doesn't even quite understand) but that its very common for kids with movement disorders (like CP) to look away from things as they touch them with their hands, almost like they are incapable of focusing both eyes and hands on same thing. Sam does that too.

    Second, we TOO are going through some "undesirable" behavior. Sammie B has always been an ANGEL (for real) and I just told my husband that lately I feel like I barely get ANY time with her (just went back to work) and that the time I DO get is so often spent saying "no sam, can you listen to me please sam, no sam," etc. and that's so hard! I am trying to count my blessings on this "typical" behavior, but easier said than done.

    Third, I am so, so overwhelmed by the prospect of potty training, so I'll be following along on your journey here - please post updates!!!!! I know that Sammie B "gets" the idea of going on the potty, just not sure how much control she has.

    And, lastly, beautiful girls!