Roanoke, Week 3: Finding Balance

Hello from Roanoke!

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Yep, we’re still here. Three weeks down, one more to go.

This past week had us feeling a bit more like locals. We now no longer need to use GPS to get us to the local ADA accessible playground, we have a favorite breakfast spot, Bea and I have explored the Roanoke River Greenway several times, and Ziggy is now a regular at a puppy play center. We’re finally getting into the swing of things just as we’re starting to pack our bags to leave. Continue reading

Advice for a Family New to a Pediatric Stroke Diagnosis

Originally published on October 16th on the American Heart Association Support Network blog.

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No one expects to hear that their child has suffered a stroke. When a stroke diagnosis is given to an infant, child, or teenager, often the first thought is: “…but, wait, strokes only happen to the elderly. How can my child have had a stroke?” The first hours, days, and even months following that diagnosis can be overwhelming, confusing, and downright scary.

I should know. My son had three massive strokes at birth.

I’m now four years into my journey of parenting a perinatal stroke survivor. After a year of living in a pretty dark state of mind, I dusted myself off, dove into researching how to best care for my son, and have transformed myself into a confident caregiver of a child with special needs.

As part of my transformation, I’ve found myself helping other parents through this uncertain journey. When I’m approached by a family new to a pediatric stroke diagnosis, here’s what I tell them. Continue reading

Verbal Or Non-Verbal, That Is The Question

Is your child verbal?

How would you answer this question when you can understand the handful of words that your “non-verbal” child has and know that he can answer yes and no questions with 95% accuracy? Man, oh man, I struggle with this.

Sol’s language center was completely wiped out by the three strokes he had at birth. We’ve always firmly believed that he is not cognitively delayed and that he understood everything we said to him, even though his expressive speech was severely delayed. He started to have words after we did our first round of hyperbaric oxygen therapy and his expressive speech has exploded since we did stem cell therapy back in March. To date, we figure that he has somewhere between 20 – 30 words, has just started stringing 2 words together, and, like Bea, will speak in his own language. (Sometimes I think Bea understands him as I will frequently find the two of them conversing back and forth.) Continue reading

NAPA is Magical

On Day 1 of our 3 week intensive at the NAPA Center, which stands for Neurological and Physical Abilitation and is located in Los Angeles (and Sydney and soon-to-be Boston) and NOT Napa Valley, I proudly posted a photo on Instagram of Solly kicking butt and standing (with assistance) during the first hour of his intensive therapy. A Mama of another CP kiddo quickly posted: “NAPA is magical! I hope you have a great experience.”

I smiled as I read her comment, thinking to myself – yeah, yeah, I’m sure it’s great, but we’ve done intensive therapy before and I’m pretty sure I know how everything will go.

Nope. I was wrong. That Mama was right. NAPA is the most magical and amazing place on Earth. Solly made the most gains I’ve ever seen him make in a short time period.

Continue reading