Friday, January 11, 2013

Here we go...

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 metabolic dr., endocrinologist, cardiologist, g.i. dr., chiropractor, holistic Md., pediatrician, geneticist, nutritionist, and a partridge in a freakin' pear tree! I'm a full time medical momager! She has 5 therapists that each come over twice a week - they're like family.

The holistic MD we've been working with, Dr. Palevsky, suspects that Josie has undergone some level of vasculitis that caused a lack of oxygen to her brain and therefore a degree of damage to her cerebellum. And here's where the bands of controversy come marching in... He believes this is most likely due to the vaccines she received early in life, such as the HepB vaccine at one week old. This diagnosis is a toughie to mention to any of our western doctors. The metabolic dr. we just saw, Dr. Biala, thinks it could be either a genetic disorder or a metabolic disorder. We've already done a ton of genetic testing, which all came back normal, but he says that was all just looking at chromosomes and with 30K genes in our bodies, any one can be the cause. He did a lot more blood work that we're waiting on. Josie's MRI, thankfully, showed a normal brain, so if there is any degree of brain damage, it's undetectable.

I'll continue to write about all of our experiences - from Josie's symptoms, the doctors visits, the discoveries, the treatments, and anything and everything else along the way.

I was recently asked by one doctor, "how does it feel to be the mother of developmentally disabled child?" I was pretty shocked at the question as I hadn't accepted that term yet although I'm starting to. But to answer his question, I said it's the feeling of never stopping. There's always something more to learn, something more to do for her. Like I imagine any parent would feel, there is nothing I wouldn't do to ensure that Josie will live to the best of her potential. I realize this will all take time, it will be a journey.. And so now I'm writing it down.

Music reference: Here we go is one of my favorite songs by Dispatch.

1 comment:

  1. Josie couldn't be supported by a more amazing family. :). I'm so glad to have your blog to read about sweet Josie's progress. And, the music references (classic Nicole!) are an additional bonus. ;). Y'all are always in my thoughts!!