Back to life, back to reality

Yesterday, B spontaneously draped herself over the dog, then tumbled onto the rug in a pile, her arms and legs outstretched. Laughing all the while, because she didn't THINK about how to make those moves and then gingerly arrange herself. She just did it.

On B's discharge from the hospital, the occupational therapist called her improvements a "miraculous recovery"; we would agree, though we're glad no one told us at the outset that miracles would be necessary. But it's true that she looks better than she has in months. 

She just completed her first week back at school (part-time, so she has the time and energy for her many therapy & doctor appointments). Her neck, lower back, right arm, left leg—all areas that were either immobile or excruciatingly painful—are looking healthy, and feeling astonishingly normal. Chewing has been slower to improve, but she can now manage rice and beans or omelets. B gets along on crutches, since her right foot is still tight and its range of motion is limited. But even there, tremendous progress has been made: She can now walk up stairs without the crutches. And as of Wednesday night, the leg spasms that kept her up for hours each night, often moaning in tears, finally stopped.

Aren't you so thrilled? people ask me sometimes, about B's recovery. And yes, of course, I am. Still, I don't feel that joy the way I expected to. When B was at the lowest point of her illness, I imagined feeling a wave of indescribable elation when she got better, but that moment never came. I've felt brief happy bursts, sure, but often I'm numb. Or anxious: Yesterday, my second day heading back in to work, I forgot how to pull up my NJ Transit ticket on my phone and nearly had a coronary. Or, occasionally, angry: I don't usually hurl F-bombs at surly parking lot attendants or bad SUV drivers. Or, weirdly, starving: I have eaten NONSTOP since December, and therefore ended up busting through my jeans, Incredible Hulk-style, somewhere around the end of January. 

None of this is normal, per se. But I remember how desperate and sad and scared we felt just a short time ago, and I am once again relieved to be on this side of the crisis.

Re-entry

B is a fighter. Wheelchair, gone. Walker, gone. And this weekend, she came home.

So far the transition back to "normal" life has been relatively smooth. The stairs haven't posed too much of a problem—nor the overzealous love of our Tigger-like black lab. And we are all overjoyed simply to have her back in the house.

Recovery is far from complete, though. We have weeks and weeks of outpatient therapy to get through (several different kinds in several different places)—and to juggle logistically. A mere glimpse at all the things we're supposed to fit into our weekly schedules now can make me want to curl up and hide. And, of course, we're waiting for all the unforeseen challenges that are sure to pop up. As well as all the sudden urgent reminders of all the forgotten and overlooked things that have slipped by us in the past few months. As anyone who has seen Gravity can tell you, re-entry can be rough.

Don't get me wrong, though: We are happy. We are more than happy to have moved past the hospital stage. And the B-can't-move-her-limbs stage. And the constant pain stage. So we're on to the next stage of recovery. All of us. Wish us a smooth landing.

Flat Feet

The sleepless nights, the trafficky drives down the turnpike, the logistical nightmares, the endless pep talks, the headaches, body aches, general anxiety, and all the other frustrating, energy-sapping, mind-numbing stuff we've had to deal with over the past few months—I can forget about all of them for a few seconds when I see both of B's feet flat on the ground.

They come back to mind, of course. Pretty quickly, too. But now I can just picture those feet on the floor, at lovely 90-degree angles, and get a wonderful reminder of what this is all for. And of how much I love my daughter.

Good news and bad news (but mostly good)

Three makes a trend, right? Well, in that case, we're definitely on trend toward recovery with B. Because after months of alternating Good Days and Bad Days, we're on the sixth consecutive Good Day.

Her initial transition into the specialized RSD rehab program was a rough one, and her first several days there were marked by a return to the frustration, despair, and fear that we'd seen in her when she was first admitted to the hospital back in early January. But after a total meltdown last Monday, she turned a corner—psychologically and emotionally, at least. She is not just fully cooperating with her physical therapists, but asking for more—and more difficult—exercises to do. Her attitude has done a complete 180, going from "I can't" or "I guess maybe I'll try, but..." to "I will!" and "Watch what I can do!" Her independence is growing day by day, as is her positivity.

So we're feeling pretty darn good about B right now, in the way she seems to have matured and in the determination to get better that she's now showing us. Our biggest challenge at this point is making sure that her new gung-ho attitude doesn't get squashed or squandered. Which may be tough, considering all the logistical, bureaucratic, red-tapey problems coming at us from all sides. We've got the insurance issue—hoping they will not only agree to continue funding B's rehab, but also increase the meager number of therapy hours that they've granted her so far. And there's also the hospital-stay-related issues—both the typical (like the bad food) and not-so-typical (like the 13-month old roommate B was saddled with this weekend). Off to do battle.

It has been over a week since B was hospitalized. A lot has happened, but forgive me for giving you all the Cliffs Notes version—I'm writing this in one of the few waking hours I spend at my own house these days.

Two Thursdays ago, when things were at what we hope were their worst —B couldn't stand or even sit upright, had only one usable limb (her right arm), was in constant pain, and was falling into terrifying, screaming, panic attacks—we somehow loaded her into a car and took her for evaluation at one of the country's few intensive inpatient RSD rehabilitation programs. We were promptly told that she was not healthy enough to attend. That was pretty much the emotional low point for us as parents.

But there was no way we were just dragging her back home again to a house in which we non-professionals were utterly unequipped to help her. We went straight to the emergency room at the affiliated children's hospital and were admitted almost the moment the ER docs saw B.

The past week has been a grueling one for all of us—Noelle and I shifting back and forth between home and hospital—during which B has gotten meds that seem to have actually helped a bit, engaged in some tough (but far too infrequent) physical and occupational therapy, and eaten a lot of horrible pureed foods (because her teeth hurt too much to chew). The spasms still come at night, which when coupled with the constant loudspeaker announcements, fire alarms tests, and random pop-in vitals checks, make a truly peaceful sleep impossible. And we've run into more logistical frustrations than I care to count.

But progress has been made, too. Every PT session gets just a little bit better. At the last one, B stood up and bore her own weight for 10 seconds—something she hadn't done since before Christmas. And perhaps more impressively, she didn't yell at the therapists during the entire session. The biggest improvement, however, has been in her mood. She entered the hospital in complete despair, and spent the first three days there muttering things like, "I'm never going to leave this bed; this is my life now." But she's been having some good days. She's talking about the future again—how she can't wait to go see Wicked when she gets healthy, and how she wants to finish her Model UN project before the group's big NY conference in March. Cards and well-wishes—from friends and celebrities alike—have done a lot in that regard. Thanks to everyone who has been a part of our humblingly vast moral support brigade.

At this point, we are both hopeful and very wary. B was finally accepted into that same inpatient rehab program that first said no to us (her week in the hospital has stabilized her and she has since been deemed an appropriate candidate) and will be able to begin as soon as a bed is free. But our insurance will only cover such programs if they prove to be working. So we worry that a slow start over there or a few bad days for B might set us back to square one. Fingers crossed.

One step forward, fifteen steps back

It's ridiculous how quickly our last, generally positive post became outdated. Christmas night was spent in the emergency room, after B's whole system freaked out, bringing on dizziness, blurry vision, and an inability to swallow. We (and her doctor) thought she might be having an allergic reaction to the new muscle relaxant she'd taken, so we rushed her to the hospital. As it turned out, it was not an allergic reaction, but a stress reaction—her body overreacted to the pain of the 2-and-a-half-hour-long muscle spasm she was having. So we were back home—at 2AM—with B stabilized. For the moment.

We'd hoped that maybe that was rock bottom, but it wasn't. After a particularly grueling PT session yesterday morning, B came home and took a nap. She woke up unable to move anything below her neck without extreme pain. Her right leg—the center of her RSD affliction—was suddenly the least painful part of her body. It was excruciating to bend her left leg. Her lower back ached too much for her to sit upright. Her elbows were so painful that she couldn't bring a cup of water to her lips to drink. Turning her head was agony. Noelle and I spent the better part of the day making emergency calls. We called every medical professional she had seen so far, and a few she hadn't even seen yet. A couple of them eventually called us back.

Turns out B is having an RSD flare-up, a total nervous system freakout that can be triggered when she is overtaxed either physically or emotionally. As one blessedly clear-spoken doctor reiterated to me, RSD is a neurological disorder—all the extreme pain comes from her nervous system misfiring. And it's that same nervous system that controls a body's stress and anxiety levels. The disease creates a vicious cycle (one that feels particularly cruel for young kids), in which pain creates stress, which in turn creates more pain, which increases the stress, which pumps up the pain levels, and so on. (So much for Schoolhouse Rock: "Every body understands those telegraph commands.")

Lesson learned from today's horrific experience: We can't beat this thing without treating both the physical and the emotional/psychological sides of it. Another lesson learned: We can't beat this thing on our own. We need to look into inpatient treatment.

We've been hearing for weeks—from doctors, PTs, parents of other kids with RSD—that the best surefire way to beat this disease is by enrolling in a very specialized, long-term, inpatient program with hours and hours of daily intensive physical therapy coupled with psychological counseling. There are a very few of these programs in the nation—and only one in our state. But as much as we've tried to avoid mentally going to that place, we've come to realize that we cannot fix this at home.

We've already begun making calls and have quickly realized that the logistical, red-tape challenge of getting into any of these programs will end up being the frustration icing on the crap-cake that is our life right now. They all have long waiting lists. Some have a prerequisite number of outpatient PT sessions that a patient must complete before they're even eligible to apply. And who the hell knows whether our insurance will even cover it. We've only managed to get an evaluation appointment at one so far—and that's not for several weeks yet. In the meantime, I hope and pray that B will wake up this morning with her system calm enough to let her get out of bed.

A Christmas Gift

Just thought we'd let you all know that after a really rough morning, during which Bryn was negative, frustrated, despondent and insisting she couldn't try any harder, her physical therapist kicked her butt into gear and got her onto the stationary bike. She achieved an 80-degree angle in the knee. Best yet. Merry Christmas.