Quick Neuro Update

The neuro was very, very nice.  And smart.  And not condescending in the least.

It’s spastic diplegic cerebral palsy.

MRI is on August 26th, 7:30 AM.  General anesthesia will be administered. We’re going to determine the extent of brain damage and review his treatment and discuss options.

“So,” I told/asked the good doc.  “CP isn’t progressive, so this is as bad as it gets, right?”

“Not really,” was his response.  Apparently as CP kids grow, different nerves/muscles come into play and it can really do a number on their ability to function well.   He’ll need to be watched very closely and have a lifetime of therapy.  Fuck.

Oh -and the autism?  –  likely an offshoot constellation of the galaxy that is CP. Great.

Smacky is his normal self, doing relatively well and living his life.  S and I are living with occasionally heavy hearts and hoping for the best.  His social therapy class has been helping greatly – he’s been learning to convey his feelings better and can now show me and explain where his legs and arms bother him.  Interestingly, what’s come out of that is his pressing for more intervention with his hearing – he’d like “new” headphones – currently he uses an older noise-cancelling Bose set – the wire gets in the way of his play.  I need to research finding a set for kids for his type of need.  Loud noise just makes him incredibly ornery…he’s especially sensitive to the woosh of wind, and this makes it nearly impossible to get him out of the house on breezy days.  And before you suggest it, he absolutely hates earplugs.  Believe me, I’ve tried.  He’s just going to be one of those headphone kids and that’s okay.  If it gets him out and helps him tolerate our very noisy and annoying world, so be it.

We went for a nature walk the other day – the guide took a rather steep and rocky alternate trail that afternoon  Smacky fell four times in the first minute.  I urged him to go at his own pace and not worry about lagging behind the group.  He not only managed to keep up, but toward the end decided to head up front to lead the pack.  He fell many more times, but any frustration was overshadowed by the excitement of being with friends and learning about the woods and climbing up and over logs and rocks and finding a turtle.   Days like that let me know that my urging him to take risks is generally worth it.  His tears pierce right through me though – when he wipes out and the eyes well up, it’s incredibly hard to resist the urge to scoop him up and take him someplace to hold him tight and sit quietly.  But if I did cave, we’d never learn his limits.  Nor would he gain the confidence or enjoy the happiness of participating in physical and social activity.   Nor would he learn to try to take his challenge in stride – to accept it and keep going and live life to the fullest.

An advocate at the pedi’s office suggested I get him involved in the Special Olympics.   Huh?  My response is he’s not THAT bad – he doesn’t need that kind of  …and then I realize.  As a parent I’m still wading through quite a bit of denial, aren’t I.

This whole thing just sucks.  It will be okay though – I’ve got to take every day as it comes and teach him good things – I mean, I know a thing or two about being limited physically and having to live with the challenges of an illness – I should be able to effectively guide him through this.  At least I hope I can.   I hope we all can.  The twins, S – they seem to be rising to the occasion wonderfully.  The twins never let him rest – to call them talkative is an understatement and their incessant active play is, by default, amazing therapy for Smacky.

Gah.

Will update more after the MRI.  And then hopefully I can free my mind a bit to talk about something else.  Thanks for reading. Ciao.