Lio Spinelli

The past few months have been consumed with trying to find the best way forward with Lio’s super leg.  We learned in September that it had started to grow crooked again.  The first surgery to remobilize his knee and to reactivate growth in his injured leg had worked brilliantly well for about a year and half.  Then the growthplate partially reattached itself to the bone and it started to grow crooked again.  We had planned to have another operation (a repeat of the first) to reactivate the good straight growth.  But when the surgeon in New York, someone I really trust, started to express some reservations about how well it would work we were all prompted to rethink.  The surgery planned for a few days after Christmas was cancelled and the past couple of weeks have been spent shuttling up to London to meet with pediatric orthopedic surgeons there.

We saw four surgeons last week and have one last appointment tomorrow.  After that one I want to make a decision quickly, maybe by the end of the week.  It’s clear something needs to be done and done soon:  the difference in length between the two legs is now about four centimeters and the angular deformity is now about 20 degrees.  This could pose potential problems for the alignment of the rest of his body.  The thing is, to look at him you barely notice an issue.  He seems to be going further every day, moving well, playing well, mastering the Chinese yo-yo (the diabolo), riding his bike and doing every wonderful, simple thing that six- and seven-year-olds do.  If you just look at him it’s impossible to say he’s not doing well and enjoying being a boy.  And on the days that his leg is not hurting him I can forget that anything is a problem for long spells of time.  For this I’m continually grateful.  But there is no denying that the angular deformity is getting worse and that he needs surgery.

The first step (probably), something that will be done in a month or two, will be to permanently stop the growth on his super leg before it gets any more crooked.  Giving up the hope for straight growth and permanently and artificially stopping the growing on his little leg is something I have some psychological problems with.  The next step would be to begin the very long and unpleasant process of lengthening and straighten which, depending on what surgeon you ask, might be done in one, two or three phases.  Each phase would imply months in a medieval-looking lengthening frame which would encircle his leg and have cables through the flesh  and attached to the bone which would have to be adjusted daily.  This will not be fun for Lio but he assures me that he can handle it (although he says he hopes it won’t hurt as much as the leg bending machine he was in after his last surgery).  Sometimes he even says it “will be cool to definitely have more operations than anyone else in my class” and he really likes when I talk about him having a “bionic leg.”  I guess we’re both lucky in our imagination.  That may get a work out in months to come but together I think we’re up for it.  The thing that looms in the background is the spectre of having to surgically stunt the growth on his good leg in order to spare him lengthening on the injured leg and to ease the medical management of things.  If I have problems with the idea of stopping the growth on his crooked super leg I can barely begin to describe my resistence to the idea of shortening his good leg.  Thankfully some of the better (or at least more confident) surgeons we’ve spoken to say that won’t be absolutely necessary, but they all do discuss it as an option.

Cognitively and socially Lio is flourishing and flowering.  He had a fantastic autumn term at his sweet little village primary school in Kingston.  His violin playing, something that evolved out of music therapy during his neurological rehab, has become a real part of his identity.  He especially likes being on stage and performing.  When he played a solo of Minisnoa at the school Christmas concert you could feel how happy he was.  Performing is a real motivation for him and he rehearsed and rehearsed his lines for his class Nativity play with an intensity I’ve never seen before in him.  He loved wearing his gold-thread embroidered shirt and making his big gestures at front of the stage.  Nigel and Penny came down to see the show and we were all proud beyond words.  I couldn’t help but think that Sasha was proud too.

As we were anticipating having surgery at the end of December, and a long period in a straightening frame after that, I really wanted to give him a tremendous Christmas and birthday before hand.  For his birthday party with school friends this year we booked Anne of Cleves’s House, a medieval house and museum just around the corner from where we live in Lewes.  We had a double party with Kate, one of Lio’s classmates with a birthday around the same time.  Kate and Lio helped brainstorm for the party and it was good to see him struggling and succeeding to articulate ideas about what he wanted included.  The two of them came into the hall dressed as a Tudor Lord and Lady to the huge delight of all their friends.  I’m hoping that won’t be the last time Lio dresses up for a birthday party but we are approaching the age of things not being cool—another bitter-sweet milestone.   They had a treasure hunt in the museum, and another outside in the garden, played “Tudor Bingo” with the names of their friends instead of numbers, tossed paper snowballs, ate cake and were buried under an avalanche of presents.  Once again I was struck by the generosity of our friends, not the in presents, but in the time and help and encouragement which has not diminished the slightest bit since the accident.  I don’t know why I’m surprised, but it was an utter success in every way.

We were back in New Jersey for the holidays and for Lio’s birthday on the 26th.  The clear skies, the snow and the great sense of space were a tonic after too many weeks of dark and damp English winter with too much panicking about Lio’s leg.  And with the operation cancelled, with nothing hanging over our heads, it was possible to simply enjoy every minute of it.  We went into New York City where Lio devoured the Christmas scene and where he got to play with his friend Sofia, the daughter of an opera friend from Italy who happened to be singing at the Metropolitan at the time.  Lio played and played with his cousin Kevin, who lives only two doors down from my mother in New Jersey, and after seeing each other almost every day for two straight weeks it was hard to pull them apart on our last day.

Lio’s grandmother was a saint as usual.  She was accommodating and generous in every way imaginable, considered in what she said and so marvelously helpful with Lio.  This meant I got to sleep in on serval occasions, a infrequent luxury for me.  We had Christmas Eve, Christmas Day and Lio’s birthday all with her.  She baked Lio’s birthday cake, I put the icing on it, Lio and Kevin decorated it with M&Ms, and he was buried under a mountain of presents for the third straight day.

It’s good for Lio (and for me as well) to get back to the States every now and again, to stretch out, reacquaint ourselves with the sun and unplug from all our medical and legal deliberations.  And now that we’re back home, recharged and relaxed, I find that my anxiety has been replaced with a sense of hope not just about Lio’s leg, but his whole future.  It’s easy to forget the progress he’s made if you spend too much time staring at x-rays.  He is really good at so many things I never imagined he would excel at.  His tricks with the diabolo and his songs on the violin are all certainly beyond me, but over and above that he is a wonderfully sweet and compassionate person, empathetic far beyond his years.  I’m also much more hopeful about his leg now.  One surgeon last week said, completely unprompted and without my fishing for reassurance, “He’s going to be fine.”  He’s going to be better than fine; he is going to have a marvelous life.

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