Hi – We’re Here

I realize it has been a few weeks since my last blog post and my only explanation to that is I have a young infant who loves his mama and a little girl who has found a freedom like she never knew. I see these blogging mothers who raise families, some work, in pictures their houses look clean and tidy and yet they still find time to create these amazing blogs. I can’t quite figure out how they do it all. I thought I would have plenty of time to dedicate to this blog after I had Sebastian. Lola would be in school, Sebastian would be an infant and I would spend parts of my day listening to music and writing my little heart out. I find that...
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And Of Course, a Lola Update

Lola has been one busy little girl which means that makes us busy by default. I’ve said it before and I’ll say it again, to us Lola is just Lola. Sure we know she has challenges and quirks, crazy schedules and many appointments, medicines and much much more but that is the life of our little girl. It’s the only life with a child that we know. When I don’t post about Lola, it’s simply because Lola is just busy being a typical toddler. She’s sassy and hornery. She is on a food strike where all she wants is peanut butter sandwiches and crunchy snacks. She throws fits because she can’t voice what she wants which has led us to believe that “the terrible twos” really do exist....
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Celebrating Me is Celebrating Being Lola’s Mom

For me, Mother’s Day began on Saturday this year as I was scheduled to work on Sunday. Really, I feel like it’s Mother’s Day every day as my wonderful husband is always sure to make me feel special no matter if it is a holiday or not. Saturday felt like a crisp fall day rather than teetering on the edge of spring. It was chilly and the cloud cover left the sunshine to remain a mystery. Regardless, we bundled up and headed to town to join in on the festivities at Celebrate Irvington Day. The tiny streets were lined up with artists, local businesses and everyone in between. There was a craft sale going on which is where you could find me a good chunk of the morning....
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The Neurogeneticist

“Amazing!” “Fantastic!” “Lucky!” These were among the promising words the neurogeneticist said to us on Friday as he discussed Lola’s undiagnosed condition. I remember asking Rob on Thursday (the night before the appointment) if he felt worried about what we’d find out. And ever so calmly, he said he didn’t feel worried at all and he just thought this was something that just happened to Lola. Oddly enough, I too, didn’t feel as worried as my normal worrying self would have usually felt. I just kept telling myself as long as it’s not terminal and as long as it’s not a degenerative disease than I can handle just about anything. And thankfully…oh thankfully…the doctor said just that “I don’t think she has a life threatening illness or some...
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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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