Josie's Journey

We took another road trip this week - to Steelers Country. As if I care about football. I don't, but that's a shout out to Uncle Peter. So we went to see Dr. Christine Roman-Lantzy, who is one of the few experts in Cortical Vision Impairment (CVI). She actually wrote the book . I made this appointment in September so needless to say, I was very excited to finally meet her. Josie was diagnosed with CVI at around 9 months. It's actually amazing to me that the first opthamalogist we went to did tell me it's her brain and not her "vision" (the structure of her eyes are fine), but she never told me about CVI. The second opthamologist handed me a one-pager with the definition of CVI, but never discussed the importance of tackling it immediately with CVI-specific vision therapy. The next two eye doctors had nothing CVI-specific to tell me either. The fact is that a child with CVI has a great chance of overcoming most of the challenges if they engage in the corre...

I think it's time I start writing about our story. For one, it will help me chronicle and remember the details of our journey. Second, perhaps it can serve as useful information for someone else. And the third reason is purely therapeutic. This will be the home of 'Josie's Journey', the unraveling story of our precious little baby girl's fight to develop. Josie is just over one (13.5 months). She still cannot sit up unassisted, roll over, or do anything above those skills. She has been diagnosed with loose terms such as global developmental delays, developmentally disabled, severe hypotonia, static encephalapothy, and cortical vision impairment. After many, many tests, we still do not know the cause, actually by now I should use the more familiar language and say there is no known etiology. We've been to oh so many doctors; each week there's usually at least one appointment - I'm talking 2 neurologists, 3 ophthalmologists, 1 optometrist, a me...