The inside story

Philadelphia is obviously sick of the snow. Yesterday the weather reports had people in quite the tizzy with the forecast of another approaching snowstorm. Today the markets are apparently cleared of milk, bread, eggs, and cheese, the schools are closing early, and the game shows are interrupted with news flashes about the weather, but here in our cozy, golden room on the 17th floor of the Ritz the flakes flutter down past our windows and nothing is sticking to the ground outside. And nothing much is bothering us.

I don’t feel any sense of urgency or panic. We’ve crossed the threshold and are on the other side. Ben, Mark and Grandma Joyce sit happily huddled around the ottoman playing cards, a game called 7-27. They all are numbers people. Not me. I’m a words person, as you might have guessed.

However, I’ll share some numbers with you today, numbers which are making us pretty happy, overall.

We went in for our follow-up appointment with Dr. Cahill this morning. He gave Ben the go ahead to return home. More on that later. We looked at x-rays and compared the day of surgery (35 degree thoracolumbar curve)

to two days after (down to 12 degrees!).

I thought you might want to see his new hardware.

5 staples and a hybrid adjustable rod,

which you can see is attached in 4 places,

on 1 lumbar vertebra and 3 ribs.

He is now required to wear the protective brace every day for the next six weeks, but not at night. Following that he’ll need to wear it whenever he participates in activities which would entail twisting, turning and bending. This will hold true for the first 6 months following surgery. His activities are not limited except for a prohibition on all contact sports, bungee cord jumping, parachuting, rock climbing, motorcycling, trampolining, and jumping on horseback…until the rod comes out. (It would figure that Ben has all of those sports on his personal “to do” list. Well, he’ll just have to wait!)

His first lengthening will be in six months (September) and will entail a trip to Philly, a short surgery and a night in hospital. The distance makes it a bigger ordeal, but we will get used to it.

We talked with Dr. Cahill about long-term planning for the rod. It is possible that Ben will have to have more than three lengthenings and even possible that he’ll need a second rod. We are in uncharted territory. That’s how new this technique is. But, as you can see, it’s accomplishing quite a bit, getting a straight spine in a way that a brace never would have done. The day of surgery Dr. Betz (the chief of staff and the innovator of these techniques) was concerned about his thoracic curve and talked about possible fusion in the future. Looking at his x-ray post-op I’d say it looks quite a bit straighter. Time will tell.

Our plans now are to leave on Monday. We have tickets to return on both Saturday and Monday. Mark would love us to leave on Saturday, but that is in keeping with his desire to be home, be done with it all. And his typical disconnect with pain. (One day I’ll tell you about the time he broke his elbow playing racquetball and continued to play for a couple hours and didn’t even go to the hospital until the next day. Uh-huh.) I am of a more cautious nature and I just don’t want to push it. And, might I add, I’m the MAMA. Yesterday Ben went with only Advil for pain management all day, but by evening was in such pain that it was hard to go to sleep and woke him several hours later. It took an hour to soothe him back to sleep (with Valium and Hydrocodone on top of his Advil). With the snow coming in today and lasting through Saturday, travel feels dicey enough. We gave Ben the choice and looking at the sheer number of hours he’d need to sit up without a break (about 12), he decided to be cautious as well.

Grandma Joyce came to visit us yesterday from New York and is going home shortly in an attempt to outrun the storm. She brought homemade brownies and a deck of cards, an overnight bag and lots of enthusiasm.

She and Ben played cards while Mark and I went for a stroll through Philadelphia. (We found a sweet little neighborhood called Rittenhouse Square and two cool yarn stores. Not that I needed more yarn, but Mark made me go in and increase my stash…really!) We had a slumber party in our hotel room last night (not that we got much sleep) and she was waiting for us here when we returned from the hospital this afternoon. It was good for all of us to have her here, and especially good for her to see Ben in such great shape.

So, four more nights in Philadelphia. As Grandma says, if you have to be stuck in a place this is not a bad place to be stuck. A few more days of take out. A few more days of game shows, Olympics, and cartoons. A few more days of doormen, maid service and solicitous hotel employees. Then we’ll head back to California, brothers, animals, and our whole network of friends and family.

Just a note before bed...

Did I tell you this? When Dr. Cahill came into the parent lounge to talk to me and Mark after the surgery was over, I was sacked out on my chair, head on my balled up jacket, drooling. When I awoke I was so embarrassed...wiping the spittle off my chin! "Sorry...I'm so beat!" I explained. But then I realized who I was talking to...the man who'd been working on my son's spine for the past nine hours. "You must be exhausted," I added. "Not at all," he said. "I'm totally energized. Things went so well!" How's that for instilling confidence in your surgeon?

Ben looked pale and ill when we got to the PICU. Tubes coming out of everywhere. He whimpered with every breath and cried that everything hurt. Being the only child in the ward has its advantages and the nurses there are wonderful, gentle, calm, and knowledgeable. He asked to be adjusted over and over. Nothing felt comfortable. And honestly, it was hard for me to imagine a position that might work knowing he had two incisions on his back, several on this side, and a chest tube in his ribs. "On my side." "On my back." "Up a little." "Down." Many times he mumbled something I couldn't quite catch. "Do you want to go onto your back?" I asked, fairly incredulous. "No," said he, in a hoarse whisper, "the dragons are there."

Oh my poor Benny. The dragons.

It took some time for the morphine to kick in, but once it did (they also added Toradol to the recipe), he settled down to a more peaceful state. I stayed for an hour or so, but then Mark sent me back to the hotel. (Mark does hospital much better than I.)

It was snowing big puffy flakes by the time I got back to the hotel. I was craving a latte, something warm and familiar. So I went in (greeting all the lovely employees who always seem so happy to see me), dropped my backpack and bag of knitting in my room, grabbed a few bucks and walked across the street to Borders. Every Philadelphian I've met has said to me, "Enough SNOW!" They are so done with the snow which is crippling the city, closing off streets, slowing traffic. It's common to see cars completely snowed in on every street. I don't know how people get to work! But, for this California girl, the snow was glorious. I felt so high and happy, knowing my boy was "on the other side" as one of my friends from the VBS forum said. I'm sure I had a HUGE smile on my face as the snowflakes fluttered down onto me.

Tomorrow may prove to be challenging due to pain. But Dr. Cahill is hoping to be able to remove the chest tube early in the morning. And after that we should see a lot of improvement.

I will fill you in as much as possible. Thank you so much for all your love and support, blessings and prayers. They mean so much to each of us.

Surgery's over!

Ben's surgeon just came in to tell us everything went great. Ben's getting set up in the PICU and we'll be heading over there for the night. (I may not actually get back to the hotel tonight as it just started snowing.) Dr. C was thrilled with how everything went. No complications and the results look good. He showed us the x-ray and his spine shows significant straightening. What a relief!

I'm so tired...Mark should be, I'm sure he got less sleep than I last night, but he's doing ok, too.

The night will be rough. He'll have discomfort and pain (though morphine should help) and he has a chest tube which we've heard is very uncomfortable. Plus he was under anesthesia for 8 hours...there's always an effect from that.

Dr. C says they'll take a scan of his chest tomorrow morning and if everything looks good they'll take out the chest tube. That's supposed to be frightening, but not too painful.

Anyhow, we've just been called by the nurse to come see our boy!

Bye!

And so it begins, part III

(This is the third in a series detailing Ben's hospital stay. Feel free to read it chronologically or reversed. I just wanted you to have the most up to the minute reports possible, and my ramblings did seem to go on!)

Six am found me walking out of the hotel, waking up a cabbie, and on my way to the hospital. Ben was scheduled for 7 am x-rays and 7:30 surgery. His surgery is the BIG one of the day and only two were scheduled. The other one is already over (not sure what it was, but the little girl’s dad was only sitting in here with us for a short while). They’ve blocked off 10 hours for his surgery, but don’t expect it to go much over 7 or 8. Long enough, in my opinion. First they’ll install the hybrid rod (1.5 hours to prep him for that, 2 hours of surgery) and then they’ll do the staples (1 hour of prep, 2 hours of surgery).

When I went into Ben’s room he was watching TV and quite depressed. Knowing what was coming and feeling a huge sense of dread. He’d had a fairly rough night (IV pain) and Mark looked like he hadn’t slept a wink. But, as soon as he got up, got into his hospital gown, and was escorted by the nurse from the PACU (Pediatric Anesthesia Care Unit) he pepped up, turning on the charm, cracking jokes, looking chipper. We walked down for the xrays and back up to the PACU and the doctors came to start checking and prepping for the Big Event.

Dr. Cahill and Dr. Betz (the BIG guy, the Chief of Staff and the main innovator of these amazing techniques) came in to talk to us about the xrays. They said his curves had progressed a bit more, but the technique should still work on most of his spine. The trouble is apparently, that he has three curves and though the upper and lower curves are most likely compensatory for his main thoracolumbar curve, the higher portion may not be affected by the placement of the rod and the staples. This area is, fortunately, not torqued which means it curves to the left but doesn’t twist around as it turns, Dr. Betz said this gave him hope that it would straighten some with the surgery today. However, if it doesn’t and continues to progress Ben will need to have fusion done in that area. I don’t know when exactly. We’ll just have to wait and see.

We found out that post-surgery Ben will be wearing a soft foam brace until the first lengthening of the hybrid rod (about 6-9 months). Probably only during the day and it isn’t constricting the way the brace he’s been in is. So, hopefully we’ll get more compliance. I’ll try to get more info on why this is, but I think it has to do with motion and rubbing on the bones until the hooks that hold the rod in place wear through or off or something like that. Blech.

Anyhow, here I sit. The internet connection here is weak so I’m not sure if I’ll be able to post this or much more, but I’m doing what I can. It’s 12:20 pm, his rod surgery should be over. We’ll check in with the docs soon. What we’ve heard so far is everything is AOK.

Can you say "Ahhhhhh"?

The change is palpable. I felt the difference from the moment we left home: a sense of release because we were finally on our way, finally done waiting for that moment to arrive.

I sit now in Grandma Joyce’s living room listening to the tinkle of Ben’s laughter coming from the kitchen where he and Mark complete a crossword puzzle. There’s been a lightness in Ben these past 24+ hours that I haven’t seen in weeks. Even though his VBS/Hybrid rod surgery is still looming, we are all feeling a sense of ease about it now. It’s not just inevitable, it’s the best option for us and we’re here, we’re going through with it, nothing’s standing in our way. Not snowstorms or germs or anything.

Yesterday morning, as I collected the last minute items for our trip, I watched Harry and Ben hugging in the kitchen. Ben burst into tears, sobbing, “I don’t want to go have surgery!” and Harry held him tightly, bestowing a big brother bear hug he’s obviously been perfecting. It was a moment that I appreciated all the more after the squabbling and lashing out of the night before.

Sherry and her kids arrived to stay with Harry and Toby for the next couple days, Deborah arrived to drive us to the airport. (Friends have been “showing up” for us in so many ways lately. This is the golden light. This is the silver lining.)

The urge to move forward helped us be timely. Group hugs on the porch led to good-bye waves from the boys and friends we were leaving behind. We stuffed our immense luggage into Deborah’s little car and were on our way.

(The boys at home have checked in with us periodically since then. It was clearly a harder transition for them since they stayed behind, as my friend Sherry noted. But even for them, there was relief in finally getting through the moment we’d all been dreading. The line between Before They Leave For Surgery and After They’ve Left For Surgery had finally been crossed.)

In a nutshell, our travel day was smooth and the mood light. We arrived at the airport, unloaded our luggage (and payed the extra $30 for our 4th bag!), grabbed some brunch (Ben had “the best orange chicken” he’s EVER had!), headed to a quiet, unpopulated corner of the waiting area and disinfected it with our anti-bacterial wipes before “plugging in” to our technology. We’d talked about wearing sterilized masks for the whole day to stave off the unbelievable amount of germs that must be lurking there in every corner, but I chickened out once we arrived at the airport, feeling self-conscious. You know me, fashion over cleanliness, right?

Well, once we boarded the plane Mark and Ben donned the masks like good little patients. Mark’s philosophy: “Wearing the masks is good for two reasons, it makes people think you’re crazy or you have a contagious disease. Either way they avoid you.” No one sitting near us was hacking or sneezing, a plus. We disinfected our armrests and tray tables and our hands frequently, and keep popping the vitamins.

I surrounded myself with knitting while keeping one eye on the little TV screen on the back of the seat in front of me. My knitting project plans have been keeping me distracted, if not happy, while preparing for this trip. I brought along about seven Ziploc bags of yarn for a variety of projects AND ordered more yarn to be delivered to the hotel while I’m there AND have already scoped out the yarn stores near the hotel for those slow days after Ben’s been released from the hospital and is busily playing video games in the hotel room, I mean, recovering. My obsession with knitting is not a cause for alarm, it is still harmless, I believe. Like any of my crafty endeavors, I find the process totally absorbing and diverting. The knitting itself is meditative, just the thing when your sweet one is in surgery or recovering. And as the garment emerges, a soft pool of color in my hands, I get a tremendous sense of satisfaction. There’s really nothing else like it. Keeps my mind and hands busy and produces something beautiful in the end. Projects started: ice blue sweater, jewel tone beanie, blue scarf. Projects waiting in the wings: blue and yellow baby hat, fuzzy blue fingerless mitts, black and pink fingerless mitts, blue vest…and more.

Arriving in NYC, driving to Grandma’s house, we could see the piles of snow everywhere. For Ben and me, this was a first, as Ben says, to see so much snow in a populated area.

We couldn’t wait to get outside this morning to take a walk. The weather is cold, but not bitter. We were so lucky to have missed the blizzard that hit the day before we arrived! Sun was out and the snow was glorious still, not that ugly gray slush you get in a city after a big snow.

At one point, Ben trudged into the middle of Grandma’s front lawn and announced, “I’m going to make a snow angel!” at which point he flomped down, face first in the snow. “Ben. Most people make snow angels on their backs!” Mark informed him. “Oh.” And he righted himself immediately.

There’s something to be said for giving yourself extra time. Having planned to arrive a few days early to allow for weather issues meant we had time today for a late wake up, a walk through the snowy neighborhood, snow angels, snowmen, and snowball fights. Ben spent the late afternoon building a snow fort in the backyard, directing Mark to go upstairs to open the window and snag the best and longest icicles from the roofline.

At 5 pm we sent Grandma off to our great niece’s baby naming ceremony in Scarsdale. We were sorry to have missed it and would have gone, but being as crazed about germ exposure as we are right now, we decided to pass and stayed home to have a quiet pizza dinner from our favorite pizza parlor in New Hyde Park, Umberto’s.

When Ben came in from his snow extravaganza and had changed into snuggly warm sweats, the three of us sat down and listened to a guided meditation recording called “Preparing for a Successful Surgery” which Ben deemed boring and irritating, but what can I say, I got very relaxed!

Throughout this whole year we’ve been avid participants in an online forum for the parents of VBS patients. From that web source we found out about the technique and the amazing doctors at Shriners. Coincidently, one of the forums’ founders is a mom who lives with her family not far from Grandma Joyce, so tonight she and her 11 year old son David came over for dinner (I made sure they were, in fact, germ free!) and it was wonderful to chat and get to know them better.

Maria is petite and funny, with a strong side to her that is a model for me. (Mark says she’s a real New Yorker.) She is someone who gets what she wants, especially when it means the best for her kids. David, like Ben, had his scoliosis diagnosed first which then led to the diagnosis for Chiari. He was only an infant at the time! He had his VBS surgery several years ago, he was one of the earliest patients. And Maria is now a vocal advocate for Shriners and the techniques they innovate there for scoliosis patients. We had a great evening with our online friends. It was just like the rest of the day, positive, light and full of laughter.

Tomorrow we will head to Philadelphia where we’ll check into our ritzy digs.

More then…

and now for some scenes from our snowy day...

A Conversation with Ben's surgeon

Mark and I didn't get a heck of a lot of sleep last night. We'd set the alarm clock for 6:30 because we had a scheduled phone call with Ben's surgeon at Shriners, Philadelphia, at 7 a.m. Pacific time. I love my "happy pills," though. Xanax. Little peach colored tablets of peace and tranquility. Can't recommend 'em highly enough. Got me through Ben's two months at Children's Hospital four years ago and they're going to get me through this, too. Suffice it to say, I got more sleep than Mark.

So, out of bed at 6:45. Even brushed my teeth. Practiced talking so we wouldn't sound like cavemen when the phone rang. Woke Ben up. (He was adamant about listening to the conversation.) He joined us in the office. (Didn't last through the conversation, by the way. TMI.)

Thrum...thrum...that's our fingers drumming on the desk. 7:12 a.m.

Thrum...thrum...7:22 a.m. Checked emails, no last minute changes from the nurse.

[We first found out about the change in Ben's upcoming surgery a week and a half ago. The worst week to find out something that you need to talk to a doctor about immediately! He was away for the holidays, so we've been waiting patiently for this day to arrive, for our scheduled conversation in which we can ask the 57 questions we've written down (and the few we didn't think to write down). So, you can imagine how hard it was to wait this morning for the phone to ring.]

Thrum...thrum...7:28 a.m. Time to give the hospital a call.

He had it on his calendar for 10 p.m. (Philly time) Glad we took action, it's the kind of people we are. Otherwise we'd be sitting here at the computer picking our noses for 12 hours. Not really productive.

But I digress. (It's a technique. Called "diversion." Get used to it.)

Thankfully, Dr. Cahill was apologetic, patient and had some time to talk. We asked every single question on the list, and a few more. (Reminiscent of our trip to Shriners in May when we spent 3 hours at the spine clinic, all three of those hours being seen, x-rayed, checked, talked with, etc. Definitely not being ignored or quickly moved out the exit door as we had at Children's Hospital.)

Before the talk we'd done as much research as possible. But the technique is new and there isn't much out there on it. Most of what I got was from Susanne, Dr. Cahill's nurse, and from the VBS forum I am a part of. We actually didn't find out much we didn't already sort of know, except one BIGGIE: He will only need to have 2 or 3 lengthening surgeries, not the 14 we feared. (More on that below.)

So here's (finally) the skinny on what Ben's in for, ask questions in the comment area, if you have any.

Surgerical technique: Vertebral Body Stapling with Hybrid Rod

     **This is all very new, innovative and experimental. The staples have been used for about 8 years and the rods for about 1 1/2. Only 12 kids right now have the VBS/Rod combo.**

Purpose: The staples pull the vertebrae straighter, and don't allow the spine to curve more in their predisposed direction, while the rod pushes up on the concave side of the spine to give additional support to the staples/spine. Also, to allow for spinal flexibility long-term without fusion. The rod is adjustable, so it will be lengthened as he grows.
Why the rod?: Ben's curve is greater than 35 now and at that degree of curvature the staples can't do the work on their own.
Rod details: Titanium. It's about 14" long (!) and about as big around as a pencil. It's place about an inch or two to the side of his spine, hooks onto a rib and the lamina of one of his lumbar vertebrae.
Staple details: Titanium nickel memory metal. Open up when iced and go back to their intended C shape when warmed up to body temperature.
Surgery details: 6 hours all together. Rod first. Inserted from the back. One small incision in the small of his back. One longer incision (4") in his upper back, over his ribcage. VBS next. Ben will be turned on his side, his lung collapsed, and several small incisions will be made in his side. Staples inserted from there. A chest tube will be placed at the end of the surgery to reinflate his lung.
Recovery: 5-7 days in the hospital. Chest tube removed day after surgery (this is apparently the worst part). Catheter removed day after surgery. Breathing exercises are the most important part of in-hospital recovery.
Lengthenings: Every 6-9 months for a couple years. At that point his spine will hopefully have acheived the majority of its growth. We'll assess it at that time. Remember, this is a VERY new technique, so "we'll just have to wait and see" is going to be the answer for a while.
Lengthening surgeries: 2 hours in and out. Overnight stay in the hospital and then home.
Long term goals: No more brace wearing. The rod is removed at the end of the growth. (No fusion occurs.) Staples are left in. Ben's spine is straighter and he didn't need fusion and has flexibility and full growth.
Risks, overall: The rod breaks after it's been in for a while (several years) and needs to be removed or replaced. Infection, especially with repeated surgeries.
Limitations in activities: NO sky-diving, bungee cord jumping, trampolines, off-road vehicles, jumping on horseback, rock climbing, ice hockey, contact football/sports, possibly Aikido.
What if it doesn't keep his spine from getting more curved?: Fusion surgery.
What if we get to Shriners in February and it's already at 45 degrees?: Fusion surgery.

Plan for February's surgery:
Susie, Mark and Ben fly to NY and stay with Grandma Joyce Feb. 11-13.
Go to Philadelphia Feb. 13.
Check-in Feb. 14 for x-rays and pre-op stuff.
Surgery Feb. 15 7:30 a.m.
Check out Feb. 21-23.
Stay at Cousin Hana's until post-op follow up visit, around Feb. 28.
After that, Mark returns home and Susie and Ben go up to NY to stay at Grandma's for another 5 or so days.
Susie and Ben return home around March 4.

That's it for now!
(Gotta go feed some very hungry animals outside...poor guys!)

Time to let this blog out into the atmosphere

I tried before and couldn't get this off the ground. 2009 has been a long year, a year in which the miniscule amount of time I had free, the time I could have been blogging and updating our friends and relatives on what's going on here, I mostly spent trying to escape from the reality I had to deal with. I learned to knit though...that was excellent. Having something to do with my hands and now having lots of beautiful hats and scarves is fantastic! But, I also feel it's time to get this rolling, so that when life gets really complex in a month or two, I'll have a place to write it down and you can all easily access the information you want.

I have to say, 2009 didn't zoom by for me. Illness, travails, much to tend to. I still can't believe we'll be writing 2010 on all of our checks starting in a week. That seems to be something pulled out of a piece of science fiction. Nope, 2009 was not one of those "blink and you'll miss it" kinds of years.

Right from the start we were dealing with Ben's health and we are still in the thick of it 12 months later. Back in January we were seeing our wonderful therapist, beginning to process (again) the neurosurgies Ben went through four years before. And then, suddenly we were looking at a new x-ray that showed a serious progression in his scoliosis, something we'd actually tried to forget in the intervening time. Since then, we have visited three hospitals, had 10 more x-rays, talked to several orthopedic surgeons and a slew of alternative practitioners, spent many hours discussing the options available, and are again looking at multiple surgeries in Ben's immediate future. Sigh...

Ben's scoliosis was discovered at the end of 2005, when he was eight, and was 28 degrees at the time. It was the key to our discovering his Chiari Malformation. At the time, we were focused on the neurological issue. Our neurosurgeon told us it was likely a result of the Chiari. But it didn't resolve after that surgery and the doctors at Children's Hospital in Oakland didn't monitor it. Hence, our surprise this year when we found out it had progressed. Can you say "denial"?

Juvenile scoliosis can be a somewhat more difficult affair than adolescent scoliosis. AS shows up during the big growth years and is usually treated with bracing. My cousin Julie was identified with it when she was 14 and wore a brace 23 hours a day for 2 1/2 years of high school. It worked for her, she tolerated wearing it and kept her from needing spinal fusion surgery. Our nephew, Brandon, though, had aggressive AS that had was identified in his early teen years and required emergency fusion surgery when he was 15. Bracing sometimes works better with late onset AS, since the curve tends to get worse when the spine grows (which is why it so often appears during puberty) and later in adolescence a child has fewer years of growth left. The brace is not tremendously effective, though, since it is purely external and because it's hard to get a child/teen to wear the thing for practically 24/7 year after year, especially during those self-conscious years.

JS shows up during early childhood and has many years to progress. As the spine grows the growth tends to go into the curve, rather than height. During those years doctors again usually prescribe bracing or casting, the same routines they've used for decades to treat this mysterious condition. And when it gets bad enough they resort to fusion.

Ben's curve was already at 28 degrees when he was 8. It didn't improve after the Chiari surgeries. But it apparently moved slowly. A year after surgery it was still the same. But by January '09 it was 35 degrees. Fusion is recommended at 40 degrees. And once fusion is done no growth happens in that area of the spine. Fusing a pre-adolescent spine is NOT a good idea. Think of the issues down the line.

We read as much as we could on the topic in the early part of this year. We saw doctors at Children's Oakland and UCSF. We were told to put him in a brace 22 hours a day until he stops growing or until he reached 40 degrees. We were told that the brace was not greatly effective with cases such as his. He hadn't even begun his adolescent growth spurts as far as we could tell. Brace him until he stopped growing? What is that 7, 8, 9 years? That seemed impossible to adhere to. You see the trouble with treating juvenile scoliosis. You're talking about years of someone's life spent in a hard plastic corset.

One piece of research we saw said that children who have reached 30 degrees + by age 11 have a 98% chance of needing fusion before they reach full growth. Sobering numbers.

Our research took us to Shriners Hospital in Philadelphia. The doctors there are doing numerous innovations with scoliosis techniques. When we went for an evaluation in May the nurse and doctors spent hours, literally, looking at a variety of information about Ben, including 7 x-rays, and answering our questions. (One piece of very important information we got was that Ben's score on the skeletal maturity Risser scale was a 1 out of 8, indicating that he has maaaany years left of growing.) At the time we were told he was an excellent candidate for VBS (Vertebral Body Stapling) which is titanium-nickel staples inserted into the vertebrae to act as an inner brace. They give support and allow for growth and flexibility and at the least stave off the need for external bracing and fusion surgery during the growth years. The surgery is major, but not as difficult as fusion, and the result more optimistic for a child. We were also told his situation wasn't a "red alert" situation, meaning we had time to wait, see how he did with a brace (16 hours a day--not to solve the problem, but to slow the curve down), and still be able to do the VBS before the curve was too far gone.

VBS is a new technique. They innovated it at Shriners Philly about eight years ago. It's had a lot of success, but it's still having the kinks worked out of it and most orthopedic surgeons don't do it, recommend it, or even know about it. We felt that the fact that it gives Ben time to grow and live brace-free was positive enough put him through it.

From April until recently Ben has been seen by an osteopath and a Feldenkrais practitioner as we attempted to work on the situation from a non-invasive perspective. We were hopeful that those treatments were doing something positive, we hoped even that they could reverse the progress of the curve.

But, earlier this month an x-ray showed that the lower part of the curve had indeed worsened. And last week our surgeon at Shriners told us that their research now shows that with curves as high as Ben's, VBS isn't enough. He is now recommending VBS/Adjustable Hybrid Rod surgery and we are tentatively scheduled for it on February 15, 2010.

The hybrid rod is a titanium rod that is literally hooked onto one of his ribs at the top and then placed into one of his lumbar vertebrae. It hangs onto the ribcage in concert with the spine to keep it from curving over more. The strength of the rod and the staples seems to work and the kids who have had this surgery are (so far) successful at keeping the curve from progressing.

It's a VERY new technique. Only about 2 years old at this point. And it has a huge disadvantage. The rod needs to be lengthened as he grows. It's an adjustable rod, remember? As Ben grows he'll need to have the rod lengthened, so that it doesn't restrict his spine and ribcage. This means having a small surgery every six months or so until he stops growing. Remember the Risser score of 1? And the fact Ben's only just turned 12? That means potentially 14 surgeries in the years ahead.

14. One. Four. I can't quite get my head wrapped around it. But my heart is really feeling it.

Ben has already walked a hard road. He's being stoic right now, but we're working on feeling the feelings that come with this story. (He brings up the happy fact that all those trips to Philadelphia mean we can eat a LOT of cheese steak sandwiches!) If we had a crystal ball, we'd know how it ends, but alas, that's not the way life works.