Our SDR Experience, Part 1

Nothing could really prepare us for Solly’s Selective Dorsal Rhizotomy. That’s not to say that I totally unprepared: I’d read countless personal stories about the surgery, devoured anything the doctor’s office sent to us, and asked plenty of questions of fellow Mama’s whose babies had already had the surgery. Those Mamas were even kind enough to give me tips and tricks for the hardest part of the surgery: the recovery. I’ve said it before: the Special Needs community is awesome.

All that said and done, next to our time in the NICU, this surgery was the hardest thing we’ve been through to date with Solly. There were a lot of unhappy moments, quite a few tears, and many sleepless nights. Solly is one of the happiest kids I’ve ever met, so when I see him crying or in pain, I will do anything to stop it.

It was an exhausting few days.

There’s a lot to cover. Here’s what went down before and during surgery: Continue reading

A belated post. SDR: It’s On!

Let me let you in on a little secret: when I take a little break from Solly’s blog, it’s usually because I’m so anxious about something that I am struggling to put an experience into words. While we’re currently in the hospital with Solly recovering from SDR (spoiler!), I wanted to document our entire experience with this potentially life-changing surgery. So before I write about the actually surgery, this post, which I started writing over a month ago but never finished, picks up where the last post left off – our SDR consultation.

When Solly and I walked into Dr. Park’s office at the end of February, I was convinced that the appointment would be short, that, on the negative, we’d quick a quick “no” that would allow me to cross SDR off our list of possible interventions, and, on the positive, we’d finally – finally! – get some clarity around the type of cerebral palsy Solly has. 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

Taking A Pause

It’s been a rough couple of weeks.

Bea’s been whiny. She hasn’t been sleeping, eating, or wanting to do anything other than hold my hand. Solly has been cheerful as always, yet somehow not acting himself – running a little warm, not eating great, just a little off. I’ve been exhausted. More so than usual. We’ve been struggling to get anything done other than keeping ourselves fed, staying cool in the summer humidity, and getting in bed at a reasonable hour.

Something just hasn’t been right.

Then, last Monday, Bea started sticking her fingers in her ears. She was jumpy at any noise, crying unusually hard when Solly spoke too loudly or when the dogs barked. She threw a fit – a full-on two year-old’s meltdown at only 16 months old – immediately when she didn’t get her way.

Something wasn’t right. Continue reading