Roanoke, Week 3: Finding Balance

Hello from Roanoke!

img_2193.jpg

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

Roanoke, Week 2: I Did It!

img_2162During one of Solly’s therapy sessions this week, his therapists got really excited when he used his right hand to move a bead across a track, so they cheered, “Solly, you did it!”

And Solly replied, “I did it!”

Now, I haven’t heard him say this exact phrase yet, but I completely believe that he said it. I’ve long thought that Solly understands everything we say to him and part of his sensory issues (i.e., excessive biting, throwing his head back, flailing his arms) is simply him expressing frustration that he can’t find the words to respond to us. It’s like the words are in his head, but he struggles with which word to choose and how to get it out. Continue reading

Roanoke: One Week In

Hello from Roanoke!

One week ago, we packed up a U-Haul and drove 6.5 hours (well, 8 hours, really, thanks to Bea’s insistence that we stop every hour to get out of the car and run around) to scenic Roanoke, Virginia. No, we didn’t move here – at least, not permanently. We’re continuing our nomad lifestyle and have uprooted our family – dogs included – for 4 weeks so Solly can participate in a constraint intensive therapy at the Virginia Tech Carilion Research Institute (VTCRI)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.

1

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