A Quick Update

My oh my…where to begin? So much has happened during my absence…so many good things to share. In that short time, we have sold our beloved home in Butler-Tarkington, we bought a new house in the Irvington area (a really cool, urban, community-driven neighborhood), we moved (I’m so proud of my husband for moving us himself) and we have been enjoying each and every moment in making this new place our home. I will post pictures soon and will share all of the joys of this new place, but for now I wanted to tell you about the little girl that you all come back here to read about…our Lola. How is Lola? If just one word could describe her, it would be: awesome. Last night as Rob...
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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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Yes – Neurologists Really do Smile!

Just when I was starting to get into my groove on Wednesday’s, I have already had to change up my beloved schedule. While I normally work on Mondays, I took the day off so I could be at Lola’s neurologist appointment with Dr. Zimmer. I have finally come to terms that I am indeed the crazy mother who must attend every single neurologist appointment…they mean that much to me. And while I sincerely trust my husbands ability to tell me “word for word” what Dr. Zimmer said, I just know that my worried mind rests much easier when I hear the words myself. But come on…it’s not like it is just any appointment. It’s not to check out a diaper rash, it’s not a therapy session and it’s...
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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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Learning to Stand…When She’s Ready

“Lola had a good day. Able to maintain balance with rocking stool by herself in standing. Better from for bench sit to stand – leaning forward instead of pushing back into support. Completed stand to bench sitting by herself several times.” This was Lola’s physical therapy report from Tuesday and by far the most positive one she has ever received from her PT. While we are diligently working with Lola’s use of her orthotics, standing is proving to be quite difficult for Lola. We were told that when one area of therapy excels such as crawling or her vision, the others may regress or be harder to achieve such as standing or self-feeding. Lola’s biggest challenge in standing is her low muscle tone. Sister has abs of steel,...
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