Quick Update: The Hip Situation

A bit of good news for hump day

Hip health is a major concern for many people with cerebral palsy. The reason behind this is largely because spastic (tight) leg muscles can pull the hip out of the socket, causing hip dysplasia where the ball of the hip joint isn’t fully covered by the hip socket. The surgery to correct this is a major one with a long, painful recovery.

In other words: this is something you want to avoid if at all possible.

This is why, against our local doctors’ recommendations, we decided to have Solly undergo selective percutaneous myofascial lengthening (SPML) last year to give his tight muscles a release along with alcohol blocks to help loosen them up. If you’re new to our blog, I wrote a couple of updates on SPML at 2 months and at one year post-op, and also gave an update on Solly’s hip health at 6 months post-op. This surgery was a game changer for Solly’s gross motor development, giving him the opportunity to move his legs more freely so he can now walk in a gait trainer and independently propel his tricycle. 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 therapyΒ 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

Dad Is Awesome

There’s a little tune that Nanny Jen sings to Sol when he does something really well: “Solly is so great! Solly is so awesome!”

It’s simple, but effective: Solly gets excited when she sings it, and then her song gets stuck in my head for the rest of the day.

img_0925Today, though, we’re reworking that tune for someone else in our family: Mike, aka Dada. The truth is, as it is in many special needs families, Mike doesn’t get the credit he deserves. Most of the time readers hear about Solly, who works his tail off at everything he does, or about me since I’m the one who takes him to his doctors appointments, equipment fittings, and therapies, and deals with all the daily emotions of those appointments. But, in the background, there’s Mike (known to Solly and Bea as Dada), who, since the day he became the sole breadwinner of the household, has been working his tail off at the office, where his career has taken off, earning him a major promotion in the last year, all to make sure he takes care of his family.

But, his job isn’t why he’s so awesome. Here are just a handful of reasons why we love Dada and are celebrating him today on Father’s Day: Continue reading