Lio Spinelli

Two days ago while Lio and I were doing his physiotherapy exercises at home I noticed something utterly remarkable:  For the first time in more than three years his left leg, his “super leg,” was longer than his other one!  Only a tiny bit, maybe two millimeters at most, but when he laid on his stomach and straightened out both legs on the ground his left heel and left big toe were definitely further down than those on his right.  I hooted, hollered and danced around.  Lio, a bit fed up with the physio that day (and in general) said grumpily, “What the heck are you doing?”  I got down next to him, rubbed his head and chanted:  “It’s your leg, your leg, your super-duper leg!  It’s longer than the other one.”  He smiled a broad smile and asked me to get the camera and take a picture so he could see.  That’s just what I did.

It was such a glorious pay-off after two months of literal torture.  It has been very, very difficult, even for the tremendously positive Lio, to stay focused on the outcome through all of this.  Every morning we loosen the lock-nuts and twist the extension screws on the six colour-coded struts that make up his frame and every morning his femur gets about a millimeter longer.  But a millimeter is a very small increment, quite a discreet amount.  So it’s not something you notice until you hit a really clear milestone, like one leg overtaking the other.  And when we hit it I was sent flicking through the photos I took of Lio playing with his friend Jack on Sky Ward at Great Ormond Street Hospital when the frame was first attached.  “Wow!” I said out loud when I saw them.  The change is absolutely incredible.  We’ve lengthened about 4 centimeters so far, and the surgeon has set a goal of 5 centimeters (we may even be able to get a bit more if everything happens as it might).  On our last check-up visit to the hospital I was speaking to one of the nurses on the ward about how amazing (and elegantly simple) the whole process is:  You break the bone, attach the mechanical apparatus, you twist the screws a couple of times a day, and your body just does the rest — it makes bone in the space you’ve created.  The nurse grinned at me and said, “Yeah, I remind myself of how unbelievable it all is whenever things get a little tough on the ward.”

And things do get more than a little tough.  You simply cannot prepare your child enough to deal with the pain, and I must admit I underestimated the complete upheaval it would cause in our lives.  Our whole lives were organized toward the preparation for this frame going on for months before hand:  getting the right muscles as strong and flexible as possible, finding a new place to stay while Lio would need a wheelchair, and laying down lots and lots of happy physical memories that we hoped would nurture us through the six to eight months of having a metal contraption on his leg.  Virtually everything else was abandoned.  And all our work really did set us up for a running start after the operation.

The sooner you move your leg after surgery the better and the faster and the more often you put weight on your leg the better your body produces bone.  But this meant that from two days after his operation Lio was in the physiotherapy gym bending, stretching, kicking and shouting.  In those early days he had such a great attitude to it all and his physiotherapists Katie and Debbie told him he was their star patient.  I’m sure the morphine helped a good deal but it was Lio who was wanting to get himself on his crutches, it was Lio trying to straighten his leg on the bed without being asked, and it was Lio wanting to use the toilet instead of a bedpan.  That spirit got him out of the hospital two days earlier than everyone’s best case preliminary guess.  Lio was out in one week (earlier that summer we had been told to prepare to stay in the hospital up to two weeks).

The first two weeks out of the hospital he did astonishingly well:  He was sailing around on his crutches and even venturing a few unaided steps every now and again against everyone’s pleading.  In fact he was doing so marvelously that it became a problem:  His body was producing bone so much faster than anticipated that the outer edge of his femur started to heal prematurely.  Because we didn’t catch this in time a tiny bone bridge formed which was making turning the lengthening screws extremely difficult.  We sped up the lengthening to 2 millimeters per day in the hopes of breaking the bridge before it formed even further.  After 5 days of trying the bridge still hadn’t broken and we were faced with having another operation to surgically cut it or to increase the lengthening even more.  In an effort to spare him another surgery we opted to double the speed of the lengthening again to 4 millimeters per day.  I made the first of these adjustment in the surgeon’s office at our regular Friday appointment with him watching over us, hoping it would break there and then.
“How will I know when it breaks with out an x-ray?” I asked.
At that our no-nonsense surgeon laughed.  “Oh, you’ll know,”  he said.  “It’ll be quite a trauma.”
Sure enough that night at 1:00 am the bridge broke.  The next day, after 16 hours of sleepless agony with Lio wailing in pain, after more codine than I should have given him, after several calls to the hospital and insisting on speaking with an orthopaedic surgeon on call, I dialed back the screws on Lio’s frame a few millimeters.  The pain became a fraction more manageable and we saw the surgeon again on Monday.  He was happy that the bridge broke and he gave Lio 5 days of rest from any more screw turning.

In spite of all my encouragement Lio has never really gotten back to where he was in terms of movement and confidence before that complication, a complication caused in part by his body once again beating expectations.  Physiotherapy, which we do every day at home and three days a week with a professional, is simply excruciating.  When he is in the right frame of mind and I can think of the right bribery incentives the physio works:  he can straighten his leg and manage a few steps.  When he resists, his muscles tighten before I or his therapist Nicki even touch him and he howls in such pain you worry the police are going to show up.  It has been impressed on us over and over again that he needs to do his physio (first) if we’re to get any more lengthening out of it in the short term, and (second) if he wants to be able to extend his leg and use it when the frame comes off this spring.  Simply put, there is no “not doing the physiotherapy.”  So when he screams we all just have to try to centre ourselves, relax and continue.  It’s much better with Nicki than it is with me at home.  If I don’t get his mood just right he punches and bites and asks me why I hate him and screams so loud my ears ring.   He resists, naturally, and it takes ages to get through, ending in tears for both of us.  If he’s relaxed (we have children’s meditation/relaxation CDs which do help), if I’ve had the wherewithal to give him some pre-emptive pain killers a half-hour before, and if I pitch my encouragement just right, it ends with hugs and high-fives and cheering and maybe even a little (very careful) wrestling on the carpet.

When I’ve asked the doctors and therapists at the hospital if this level of pain in physio is normal, and if the difficulty in getting the active (powered by Lio’s own muscles) extension in his leg back after the complication is to be expected, they say, unsatisfyingly, that they “are not surprised” by any of this.  They’re not surprised because we are having to lengthen Lio’s bone at a considerably faster rate than they would do it normally because of the quality of Lio’s bone production.  But while it’s relatively easy to spin the screws and lengthen the bone, the muscles attached to it are having a very hard time stretching to keep pace.  This means that they will naturally be tighter and more painful when stretched, but it also means that keeping up the effort to stretch them is drastically more important.  When Lio is at his most tense he is certainly in more pain than at any time since he was in the continuous-passive-motion machine which flexed his leg after his surgery in New York two and half years ago.  And, honestly, the whole of this ordeal has been more demanding, difficult, painful and exhausting for both of us than anything we’ve experienced since those first dark days of Lio’s coma after the crash.  This is not something to be entered into lightly and when I’m able to rest I rest assured that I tried absolutely everything humanly possible to avoid and to minimize his time in a limb lengthening frame.

While we might have little control over the mechanics and biology of his leg lengthening, I keep reminding myself that there are things we can do, and are doing, psychologically to make the experience better— if we’re clever enough.  The daily ritual of the pin site cleaning, changing the dressings on and disinfecting the pins which connect the frame to his leg is Lio’s second least favorite thing in the world.  There had been days when he would begin screaming when my hand was still and inch away from the pin site.  Tired of being punched and cursed I told Lio that it was destroying our relationship.  I told him that I didn’t want to be the person causing him such pain, that I was to do fun dad-son things with him instead like build legos and make models, that I didn’t want him hating me and that I did want the bad feelings that were happening during the pin site cleaning to ruin the rest of our waking time together.  So I told him I was going to find a nurse to do it.  He was silent but I could tell he didn’t like the idea.  Over the next few days I made some phone calls and found someone to do the job.  When I told Lio that in three days a nurse would be coming to do his pin sites he said he didn’t want her to come.  I told her she had to because I wasn’t going to do it any more.  Lio grunted, “Is she nice?”
I saw an opportunity.  “I don’t think so.  She sounds a bit mean on the phone.”  I said, hoping this lie wouldn’t backfire.  “She’s old and big and tough and fat, and she’s got a thick accent.  I think she must be German.”
Deceptive, politically incorrect and possibly even cruel as that might have been, it worked.  That night as I did his pin sites Lio hardly made a sound.  He bit his lip once or twice and I have no doubt that there was real pain, but the abuse and the hitting were gone.
When we done Lio said to me, “You did that really nice and gently.  That was the best one ever.”  The next two days we had nothing but hugs and compliments after the pin sites, and the next morning I called and cancelled the nurse’s visit.  She told me to call her again if I decided I needed her in the future.  I thanked her but told her I was pretty sure we were all set.

To accommodate all we’re doing for his leg he and I have had to drop almost everything else.  Lio isn’t practicing the piano and violin at home anymore but he still goes to lessons and enjoys them socially.  He’s looking forward to playing in the Christmas concerts and while he knows these won’t be his best performances he really wants to roll onto the stage.  Homework, reading, speech and language therapy have also pretty much fallen by the wayside.  We’re now doing the bear minimum simply because I can’t push him to do anything more.  All on his own though he will still do some singing.  He says he “likes how it feels” but I haven’t really probed what he means.  He also does his maths and asks me every now and again to quiz him on his times tables while we’re driving up to the hospitals in London (15 trips in the past two months).  Yesterday he came home from school with an enormous gold sticker on his chest dying to tell me he had won a “Head Teacher’s Award” for being the first in his class to figure out some multiplication problems.  I made such a fuss over that sticker the neighbors must have thought it was a Nobel Prize.  When I spoke to his special needs teacher later that evening she said that she almost teared up with pride when he went up to claim his sticker.  Earlier this month Lio had been finding school so exhausting and difficult that they were talking about having him stay out of school and having a teacher come out and teach him at home.
Lio hated the idea and said, “They can’t make me stay home.  I am going to school!” (That in itself filled me with joy.)
We did a deal:  I wouldn’t let anyone keep him out of school if he promised to eat all of his morning snack and all of his lunch every day and if he went to have a rest in the medical room whenever his teachers thought he needed it without any trouble.  I’m so glad we made that work because, in spite of the difficulties, he loves school.  We ride the benefits in little things like his Head Teacher Award for days and weeks at a time.  They help get us over all the other hurdles.  The last of which in the active lengthening phase of things happens tomorrow when I expect the surgeon will tweak Lio’s programme to deal with the last bit of rotational/alignment deformity left over from the crash.

Something so simple but so exquisitely and innocently beautiful happened yesterday as I returned him to school following his noon physiotherapy session, a session in which he was as angelically sweet as he was resistant the day before.  All of his friends were pouring out on to the playground after lunch while he was transferring himself from his crutches to his wheelchair in the corridor.  One of his classmates, Francesca ran by and paused to smile and say “Hi Lio!” before running on.
Lio shouted, “Francesca!  Will you wait for me?”
She shouted back, “Sure Lio,” and held the door open for him and he caught up and rolled through.
That simple desire of kids wanting to play together and that simple act of childhood kindness moved me more than I would have ever imagined.  I was so grateful to have seen that, so grateful that Lio has friends that hold the door open for him, so grateful to have his lovely little village school.  I’m as grateful for that moment as I am for his leg which is now straight and long and which will carry him proudly up plenty of aisles to collect plenty of awards and sheep-skins in his future.  Indeed I’m sure now that his super leg will carry him where ever he wants to go.

I’m also thankful for everyone who has stopped us in the street to ask how we’re doing and for every card, letter, phone call, email and text which Lio and I have gotten over the past couple of months asking about us and wishing us well.  I’m so sorry I haven’t had the time to answer them but please know that they really do help keep us going and keep us focused on the things that truly matter.

This entry was posted on Friday, November 27th, 2009 at 2:44 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.