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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Just Excited

I have much to share, but getting my thoughts out in a blog post is proving to be challenging this frigid morning in Indianapolis. I generally love my two hours of mama time (as if you all don’t already know this), but today I feel immense pressure to get life organized therefore even sitting still is proving to be difficult. Nothing is bad…in fact, life seems to be heading in a direction that I wouldn’t have dreamed possible a year ago when we moved back from Costa Rica. It just feels as if there is so much to do, to get ready, to learn, to research, to explore and just so much life to live. Oh emotions…you seem to surface at the most random times. Yet surprisingly (and...
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Same Story, Different Doctor

Today Lola went back to yet another pediatric ophthalmologist…this was now her third. Dr. Zimmer wanted an opinion from Riley Children’s Hospital in hopes to find answers regarding Lola’s low vision. Dr. Zimmer thought the recent MRI results gave no indication as to why Lola would have an impairment. Just as we suspected, Lola’s eyes are healthy. The doctor couldn’t find anything wrong with the structure of Lola’s eyes. His conclusion was that Lola’s lack of eyesight stems from her brain. He thought as Lola’s development improves, her eyesight will as well. But early in the appointment, I explained how much her vision had improved in just the last couple of weeks and I was told that typically does not happen in kids with CVI (cortical visual impairment)....
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