As usual, life with Bryce is hectic.
In the last six weeks we've gone to two new specialty care clinics at Dell: orthotic (bones, braces, etc.) and spasticity (Cerebral Palsy, neuro, high tone issues...). The clinic setting suits us well - despite half day visits that start with 5 a.m. wake up calls - because of the team approach. It reminds me so of our days in Dell's cutting edge "family centered care" NICU. We see a specialty doc along with a therapist or two, often another specialist as well as an RN and social worker. It's quite the experience.
Both times Bryce has fallen asleep waiting to see the "big man" and one of those two times I've felt like my opinion, my perspective, my questions ...well, mattered. Outside of the NICU at Dell, despite many, many, MANY doctor visits with and for Bryce, I've seldom gotten that feeling.
It was surprisingly unnerving and endearing when Bryce's neurologist teared up at seeing how much has begun doing since her last visit, six months ago. She and I have had the hardest relationship, pushing me to the brink of sanity more than once. She's not the touchy, feely type but that wasn't it - I just never felt that we got the time of day. But at the clinic she took the time to sit (literally) and look me in the eye. She explained very simply that it brings her to tears to see how far he has come, how much he has overcome. That reading his history, seeing him a year ago as a 14 month old infant, she never would have imagined he'd be who he is today.
Well, me either. I mean, I've fought for it, encouraged it, hoped and dreamed for it but always with that bit of hesitant optimism that is ingrained in me.
And let's be honest, it is so easy to get caught up in the never ending daily to do lists: one hour in stander, 20-30 minutes sitting practice, 20 minutes on all fours, spio (compression garment) vest, hand splint, messy play, reflux meds, vitamin, signing practice, never stop talking to him...plus the usual feeding, cleaning, diapering, dressing, snacking, napping, grumpy time.
This is a hard job, ya'll but I love it. Never does a day go by that I don't think how lucky I am, how much I love this little boy (no longer a baby), how astoundingly proud of him I am.
Well, another first is on it's way. And it's not what you think, what strangers never fail to ask after asking his age...he's not quite to walking. Soon enough, I see it in his eyes like the day I knew he was finally off the ventilator for good - that determined look that all at once scares the sh!t out of me and swells me with pride I never could have imagined for someone outside of myself before Bryce.
No, I'm talking about botox, baby. As usual, I'm cautiously optimistic. The neuro is rather confident that shots of botox directly in the muscles of Bryce's right shoulder, forearm and hand, as well as both hips, may give him the opportunity to escape the tightness (aka spasticity, high tone) of CP enough to develop the use of those areas enough on his own to sort of overcome the troubles of CP.
It's a scary decision to make. There is no guarantee and botox is actually a poison at its root though the makers and doctors adamantly declare it's safety. We'll start with a first round, this Monday morning, expecting the peak of effectiveness to take place about six weeks later and the effects to wear off around three months.
They took video of him with two physical therapists at the clinic so that we can be sure of results, as mild as they may first appear. If we are comfortable, we'll follow up around then with another round and presumably continue with quarterly rounds for the foreseeable future.
So off to Dell we reluctantly will go on Monday morning. They'll do the shots under light anesthesia (gas) so as not to traumatize him with the painful 12-15 direct to muscle injections. He should wake up shortly there after and if all goes as planned, we'll be home in time for lunch. Wish us luck!