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

SPML: One Year Later

It’s a celebration

This week marked our one year anniversary of Solly’s selective percutaneous myofascial lengthening (SPML) surgery with Dr. Nuzzo in Summit, New Jersey. Our decision to move forward with this surgery was a pivotal point in Solly’s journey towards independent movement. In the weeks leading up to this anniversary, I’ve been reminiscing on the past year and celebrating all of the gains Solly has had and changes he’s gone through because of this surgery.

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Solly just moments before SPML

One year ago, my stomach was in knots during this optional surgery to help Sol’s spasticity (muscle tightness). I felt like I was the worst Mom ever for choosing to put my son under general anesthesia for a procedure that would be painful for him, at least initially. But as Dr. Nuzzo pointed out when we exchanged emails in a virtual consultation, Solly was living in “paralytic jail”. He wanted to move so badly, but his body fought every impulse to move. If we did nothing, it was inevitable that Sol would never be able to move on his own and his independence would be extremely limited. Because of his spasticity (muscle tightness), his bones would deform and he’d likely have to have a series of painful, invasive surgeries to secure his leg joints. Spasticity doesn’t go away on its own: medical intervention is the only way to help manage it. I’d spoken with parents whose children had SPML and after the surgery, their only complaint was that they hadn’t done it sooner. I knew I had to push past my fears and move forward with the surgery. Continue reading

Head of Ring Security

This past weekend, my eldest nephew, Reid, married his best friend, Katie. The wedding party included eleven beautiful bridesmaids, eleven handsome groomsmen, a very sweet flower girl, and Solly as the ring bearer.

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Solly and Reid

My heart soared when Reid and Katie asked Solly to be their ring bearer late last year, especially when I overheard Katie tell him: “Now, Solly, we don’t care how you get down the aisle. You can walk, you can ride in a wagon, you can be carried, we don’t care. We just want you to be a part of our day.” (How lucky are we that Katie is now a part of our family?!) And the inclusion didn’t stop there: every time anyone in their wedding party saw Solly at any of the wedding events and over the wedding weekend, it was “oh, hey Solly, how’s it going?” even though every single person who said hi to him knew it was very likely that Solly would just respond with a “hi” and a wave. This approach to including Solly is how I wish the world would include anyone with a physical or intellectual disability.  Continue reading

The NICU Nurse Who Showed Us How To Fight

May 6 – 12, 2018 was National Nurses Week. As I read through posts on Facebook and articles online, I recalled our time in the NICU where the nurses played such a major part in Solly’s recovery. There was one NICU nurse in particular who I credit with getting Solly home quickly and setting him up for success – namely, teaching us how to fight for him. This is our story with Judy. 

“He’s going to be there for weeks or even months, not days,” Mike told me as I shook my head in disbelief, tears streaming down my face. It was two days after Solly was born via emergency c-section and he’d been admitted to the NICU due to seizures. We’d just received the result from his MRI: massive, multiple bi-lateral strokes that occurred some time around birth. The prognosis from the fellow on duty that evening was horrible. She didn’t sugarcoat it at all: our son would never walk or talk, he’d likely be unable to hear or see, and he’d probably never live an independent life.

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