A Different Perspective

Anyone who knows me knows that I am a creature of habit. I think, by default, most of us are. I like staying within my comfort zone because it is safe and it helps my neurotic brain feel like it is somewhat in control. Unfortunately this behavior has trickled over to Lola, I think in part, because I have learned I have virtually no control over Lola’s unknown condition. There are no books like “What to Expect When You Have a Child With Undiagnosed Developmental Delay” to learn from. I go by pure instincts on how to best care for Lola and I often have to think outside the box to best cater to her comfort level and abilities. So when my step-daddy Steve decided to put a...
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A Quick Catch-Up

I’m neglecting this blog I know…forgive me. I have much to say, but virtually no time to say it. So here is an update on life with the girl. Thanksgiving Thanksgiving was perfect because it was low-key. We ate mucho, we laughed with friends and we simply relaxed. It was the definition of what Thanksgiving should be. No pressure to do anything except for bake the perfect apple pie. VIPS-Bloomington Holiday Party I was ecstatic to receive the invitation to the VIPS-Bloomington Holiday Party as I knew my mom would be in town from Costa Rica. I tell her almost daily about how much VIPS has changed our lives so I was looking forward to the opportunity for her to meet our VIPS family. So she, Lola and...
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The Results

On Monday morning, without hesitation I called Lola’s neurologist in hopes to find out the results from her 24 hour Video EEG (VEEG). If you haven’t noticed, I am not a very patient person when it comes to my daughter and the healthcare industry. I want her to be as much of a priority to others as she is to me and I’ve had to realize that there are just certain things (like test results) that can’t be rushed. I spent the morning at work anxiously waiting for the call and it finally came…but unfortunately it was Dr. Zimmer’s nurse and not Dr. Zimmer herself. I’ll come back to why this differentiation is so important. The nurse said she had the preliminary results, but Dr. Zimmer was still...
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No “Big Brother” for Lola

With November being National Epilepsy Awareness Month, it seems almost eerily fitting that Lola would have her 24 Video EEG (VEEG) this past Wednesday. While seizures will always be branded in my worried mind because of the severity they had on Lola’s delicate infant brain when she was just under four months old, I don’t think of them as much these days. It has been a very long time since Lola had her last seizure cluster (one tiny cluster in October 2011 and other than that not a single one since she finished her emergency Prednisone doses back in May 2011). Ask anyone close to me and they’ll tell you I am still hypersensitive to seizures and will often ask my husband if certain movements Lola does look...
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Colorado

**I apologize in advance, but this post is crazy long…I just have too much to share! Last week, Lola and I hopped on a plane and headed out to Colorado to go visit my sister, Jada and her family. While Jada and I don’t share blood, we’ve shared everything else in our lives for over 25 years so to me…she is as close as any blood sister could ever be. Our flight left early which meant the princess had a smug look on her face when we quietly whispered “Lola it’s time to get up”. Never mind the 1000 times she has woken us up before 5:00 am over the almost two years of her life. We quickly rounded up the overstuffed bags I packed (a woman and...
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