11 months and counting

Thursday was Shade’s 11-month anniversary of his brain scrambling. He’s still improving, though sometimes it’s hard for me to tell. I see him so much that his improvement is incremental for me while others who haven’t seen him in a few weeks are blown away by his progress. He did try something new in physical therapy with Trish, the biofeedback specialist. She had him try out some four-pronged walking canes. He did really well with them though not enough to be totally independent. Shade wobbles more than Weebles.

Shade’s hippotherapy started Tuesday and will continue once a week. He did really well on his horse, Ivan, who is a veteran of therapy. Shade sank into his seat well and gripped the horse with his thighs like an experienced equestrian. He doesn’t sit on a saddle — just a blanket so that he can feel the horse under him. Sandy, our friend and therapist who is overseeing Shade’s hippotherapy, says that the warmth of the horse helps loosen up Shade’s leg muscles. The goal is for Ivan’s pace and movements to mimic Shade’s natural walk. The brain should then recognize, through different paths, the electric impulses created in the Shade’s leg muscles by the horse’s gait. The more this happens, the more pathways will be created. Then when Shade transfers to his own two feet, if all goes to plan, those new pathways will trigger and help Shade find his balance, pace and underlying muscle tone. That’s the hope. If that doesn’t work, well, at least Shade had a pleasant ride on a horse.

On Friday, Shade had his first sleepover without a parent. He and Mayan went to stay with their cousins Daniel, Andrew and Lily. My cousin Amy (who recently traveled here from their home in Taiwan) and Uncle Pete were there to watch over the boys and provide the necessary nighttime eye lubing and random assistance though Shade really doesn’t need much more than transferring in and out of his wheelchair. Most the time he scooched everywhere on the floor. This was a big step in his independence. Perhaps he can stay over a few friends’ houses over summer.

Of course, the biggest thing to happen this week is not being in school. But that doesn’t mean Shade gets a complete break. He and his brother have started attending Blast summer camp at St. Pauls which is conveniently located at the end of our street. They’re very helpful, allowing Mayan to stay a bit longer while I take Shade to therapies. On the school front, Hospital Homebound has provided us with a teaching assistant, Melissa, who will be working with Shade on his writing twice a week. No doubt that the topics of his literary endeavors will involve cats and tacos. And I’ve started a daily routine of drawing with both boys. We find and follow instructions online for cartoon characters. So far we’ve drawn Rigby and Muscle Man from Regular Show and Finn the Human and the Ice King from Adventure Time. I might have to go old school on the boys next time and do Marvin the Martian. Or Ren and Stimpy. The options are endless.

This weekend, we finally got the Lego wall put up. At Shade’s birthday, we requested that people give him the big gray base plates. We collected enough to glue on a sheet of paneling which we had nailed to the wall. Next we are going to install handles so Shade can stand and build on it. It will be standing therapy without calling it therapy (the dreaded T word).

By the way, Happy Father’s Day to me. I have faced many challenges being a father but I must say that my kids have been worth it. That includes my first round of kids, Arianny and Edwin, who broke me in back when I was an immature, newly married 30-something. (Believe it or not, I used to be immature.) I jumped straight into that dadhood. No messing around with infants, toddlers or elementary schoolers. I got instant teenagers. This was the parenting equivalent of learning to swim by being tossed in a pool of alligators. But I survived, as did Arianny and Edwin, and we actually all enjoy each other’s company, which is great. And I worked out all the kinks in my parenting so that now I’m obviously a paragon of fatherhood. In my own mind. Shade, Mayan and Aitza may tell you otherwise. Anyway, thanks to my kids for showing me how to be a half-decent dad. And thanks to my dad for giving me an excellent template to follow.

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