Slow and Steady

My apologies for not keeping up with life with Lola. We recently found out the results from Lola’s first round of genetic testing and those results came back normal. This should be good news, right? Well, it should be good news and I mean it is good news, but what had me in a stricken panic all last week was what has haunted me from the very first time Lola had her first seizure…the unknowns scare the hell out of me. This news rocked me emotionally into someone I hadn’t been in a very long time. In truth, I was a mess. I began to Google, I sobbed uncontrollably, I looked at Lola as if she were a science experiment trying to pinpoint what exactly her diagnosis was...
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Backspacing and Blank Screens

Tonight as I sit here at the computer, I’m telling Rob that I just can’t seem to get my thoughts down in a blog post. It’s as if I have much too share, but every time I begin typing I quickly hit backspace, backspace, backspace until there is nothing but a blank screen again. I suppose this so-called “writer’s block” is running parallel with Lola’s undetermined diagnosis. We had one before and although lissencephaly was a hard diagnosis to swallow…at least we had one. But now Lola’s medical life has taken another unexpected turn when the lissencephaly diagnosis was retracted by a MRI performed here in the U.S. It’s as if someone is hitting backspace and all we are left with is yet another blank screen. I guess...
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A Toddler, an iPad and a bit of Bowling

You’ll have to excuse my absence over the past week, but life seems to get busier by the day. I love posting about our little existence in our corner of the world and I especially love sharing all of the great triumphs that Lola conquers yet some weeks not much goes on that is blogworthy. And rather than bore all of you with our day-to-day “normal” life, I like to save your time and my energy for the goods. I’ve been one tired out mama lately as I’ve been working full-time, caring for a child who is definitely transitioning into the “toddler” phase, making sure my newly semi-disabled husband is trucking along OK and much more in between. I’ve committed to a couple before work work-outs meaning my...
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Stronger, Walker, Bigger and Superstitious

“Lola stood upright much more today on her own. Did not need much extra sensory input today. Trying to pull to stand at surface from sitting – needs only balance help.” This was another great report from Lola’s physical therapist on Tuesday! Usually Lola needs a bit of a push to get up on her feet, but she surprised us both when she stood right up on her own. She then proceeded to balance at the bin for over a minute until her tired out legs just collapsed. But she just continues to get stronger every session and her PT always comments on how amazing her improvement is. [column size=”1-3″ last=”0″ style=”0″][/column] [column size=”1-3″ last=”0″ style=”0″][/column] [column size=”1-3″ last=”1″ style=”0″][/column] I definitely think part of Lola’s drive to...
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Stepping Out in Style…Orthotics Style

This past week Midwest Orthotics and Technology Center called to state that Lola’s orthotics were ready. Seeing that I had missed the initial appointment due to work, I was still very curious as to how the orthotics would function. I have to admit I also had visions of Forrest Gump and the knee high braces he had to wear on his legs in an effort to walk correctly. I was prepared for anything, but was pleasantly surprised when I actually saw Lola’s orthotics. The orthotics tech took her time explaining to me about why Lola needs the orthotics and how they will help. Anyone that has been around Lola knows that she is a toe pointer. If we let her continue to do this, she would probably walk...
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