Been a busy last few weeks for our Seanster Monster. Doctors have been oohing and aahing over him … bureaucracies have been fretting … and his family has been doing their best to keep him up and going (when they have the energy). We’re now into Year 2 of his Leigh’s disease, and he continues to, slowly but surely, defy the odds.
Okay, details. His 3 August appointment with his pediatrician went well – we transferred responsibility for his prescriptions over to her, and she increased his food intake from four cans of formula per day (1000 calories) to five (1250), with an eventual goal of 1600 calories. Dr. Abraham has worked to make herself knowledgeable about Leigh’s and about Sean’s outlier status in relation to it, so we’re pretty pleased with her. We set up a follow-up appointment for 3 September, and figured we were sitting pretty.
Er, not quite.
The very next day (I wish I were kidding about this), we get a call from the state bureaucracy that funds his formula supply, saying that they’re about to cut him off because he hasn’t seen his specialist in over six months. Apparently a pediatrician isn’t good enough for them; they require him to be seen by either his designated rehabilitation specialist or his gastrointestinal specialist – plus a dietitian – before they’d approve a prescription renewal. (Now ask me if we’d been informed of this at any point earlier. Go ahead, ask.) And all those folks are back at Children’s Hospital in Oakland, where Sean’s Leigh’s was first diagnosed.
Well, that led to a few hours of frantic calls to CHO and the state bureaucrat, trying to get everything coordinated. Eventually we were able to get everyone on the same page and secure an appointment for Sean for the morning of 19 August.
And we’re glad we did – though not as glad as the staffers at CHO, who were totally losing their minds over the fact that he could sit up, stand with support, walk with assistance and the whole megillah. Remember, eleven months ago they’d basically sent him home to die, thinking there was nothing left they could do. You never saw M.D.s so happy to be wrong!
(Two side notes: as far as his progress, the toughest customers are Sean’s parents, who still have the perspective of the pre-illness ball of fire and babble Sean used to be. We’re still dealing with that – but we’re glad he’s come back as far as he has, and look forward to the next development. Also, after hearing from a family whose daughter had Leigh’s and had to make a nearly 500-mile round trip to a facility that could treat her, we will never complain about the 70 miles to Oakland ever again!)
And just today, Sean got another taste of people going gaga over his newly-regained abilities. Several weeks ago, he was approved to receive a walker, and today I took him to the school where he gets his weekly therapy to pick it up and have it adjusted for him. The tech who was there for the fitting was the same guy who did his wheelchair back in January, and couldn’t believe how far he’s come. Next up, this Friday he’ll be fitted for new, “dynamic” ankle-foot orthotics (AFOs), since a) he’s grown since he got the last AFOs, and b) he’s walking now, which his current AFOs aren’t built for.
As you probably gathered from the last paragraph, yes, he’s still walking, albeit with a lot of help. But he’s gaining slight improvements in foot placement each week. Balance is still the big issue, since he can’t yet move with the speed or coordination he’d need to stay upright. Then, that’s what Daddy’s here for, right? Other abilities are either holding steady or showing marginal improvement. We’ll take what we can get.
So what’s next for the kid? School!
Well, sorta. We’ve been getting visits from Special Ed. people at the local school district (most of which my wife knows, as she’s a Special Ed. assistant herself), checking his comprehension, sight, vision and whatnot. Just today we got a message on our machine from the speech therapist at the neighborhood public school, wanting to see him so they can develop some communication methods for him; we’ll call her back and get that set up. Hopefully they’ll be able to arrange some in-home tutoring for him, as technically Leigh’s is an autoimmune disorder and thus precludes him from spending too much time in the Great Cold & Flu Exchange (as my mother-in-law calls public school). Time will tell …
We’re just grateful we’ve had as much time with Sean as we have – and I think we owe most if not all of it to God’s people interceding for him. Thank you so much for your prayers for Sean, and please continue as we keep going down this long road with him. Who knows what miracles the future will bring?