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.

Nothing is simple

Wonderful friends and family (you know who you are) ask me every day how B is doing, and I (Noelle) never know what to say anymore.

I could say that B is getting better. Her knee is bending just a few degrees farther every day. Since the nerve block, you can touch her leg without having her recoil in horror. A light breeze on her skin doesn't make her wince. She laughs at the Simpsons, while playing a board game, at Chris—sometimes even while he's pushing her to do ever-harder physical therapy exercises. At these moments, Chris and I feel like daily life is easing back into its normal shape. We can imagine an end to the chaos that has overtaken our household since November 20.

But then, you could ask me an hour later and I'd be far less positive. That knee, the one that (ironically) appears so lithe and graceful in photographs, refuses to bend again no matter how much pressure you exert on it. And when it finally does, she screams and begs us to let her swear, which we'll let her do (fuck it, why not) as long as her brother isn't around. Her face curls into an angry sneer: "Why do you keep making me do things I can't do?" "You don't understand what I'm going through." And her ankle just won't budge a millimeter: It's still stuck in the same damn Barbie foot position.

And then of course there are the nightly leg spasms, which start shortly after she turns out her bedroom light. They used to last about 10 to 15 minutes. Despite the meds she takes to control them, the spasms now last about an hour to an hour and a half. B and I lay there, trying everything to get them to stop: I shake her leg in time with the spasm; I massage the muscles; I distract her with the Colbert Report app or show tunes on YouTube; I make her lay on her belly, then her back, then her side; I have her hobble around the room on her crutches. Nothing makes the slightest difference. She wonders when this hell is ever going to end. I tell her, it will, don't worry. But I wonder myself. And I worry.

Still. As I keep reminding myself, fitful, imperfect progress is still progress. Case in point: About a week ago, the pain specialist and physical therapist both told us that, to aggressively treat her RSD, B might have to be hospitalized by late December/early January for up to two weeks. Reason being: RSD can spread to other parts of the body—it does in about 70 percent of cases. Also because her leg tendon is shortening the longer this goes on, and the damage can become permanent. And finally because her RSD is in an acute phase—so it's not yet considered chronic—and her best chance at remaining in remission is successfully treating this onset in the first three to six months. 

But as of the other day, both medical professionals concurred that B is making enough progress that we should be able to keep her at home—for the time being, anyway. It's not the Christmas miracle I might hope for (B bounding out of bed, fully restored and pain free), but it is enough for now.

I never thought I could experience this much joy simply from seeing someone bend her knee. But I tear up every time I see it. 

The hard work appears to be paying off. We've achieved what I'm estimating to be a 70-degree angle or so. Better yet, B can get there herself—she doesn't need us to bend it that far. We've been working at holding the bend for lengthier periods of time. So far, so good. This is by far the most hope we've had in a month. 

Yesterday may very well have been the hardest day of B's life so far. And it certainly wasn't one of our easiest either. The nerve block procedure was successful and has helped—to an extent. It has diminished the hypersensitivity in her leg, allowing us to finally touch the leg without causing immense pain. One of the most difficult parts of this for Noelle and me has been our inability to soothe the part of our daughter that hurts so much—we couldn't rub her leg or kiss her knee without making it feel worse. But those gentle caresses and soft pats that we, as parents, have been longing to give her can finally happen. For now, at least. Because the effects of the nerve block may prove to be only temporary.

The nerve block also did nothing for her mobility. Nor did it decrease the excruciating pain she feels upon anyone trying to bend her knee or ankle. And it was just such physical manipulation that B woke up to as she came out of anesthesia. The scene in the hospital yesterday morning is one I'll never forget, but would very much like to.

After being locked in a contracted position for so long, some of the tendons of her leg have already begun to shrink and shorten. This makes attempts to stretch them back into normal position all the more difficult and all the more painful. We can't let it continue to get worse. Which means more rigorous exercises, more frequently. Thankfully, B is now with a physical therapist who is not afraid to push her, and whom she likes and connects with on a personal level—someone B can still laugh with after that person just made her scream.

But the professional PT only happens once a day, and B needs to keep working on those joints throughout her waking hours. So the rest falls to us; stretches and bends (or attempts at bending, anyway) that have to be done constantly. And which alway hurt. A lot. But these exercises are the only way to make sure we get her leg back. I keep telling myself that as much as she hates all of this now, and as upset as she gets every time we say its time to work that leg, and as angry as she gets with us every time we tell her that, no, we can't stop doing this or no, we can't skip it his hour—she will look back on this in the future and thank us. I keep telling myself that because I have to. This is the hardest kind of love.