lio nicola in Neenach

Two days ago while Lio and I were doing his physiotherapy exercises at home I noticed something uterly remarkable: For the first time in more than thre years his left leg, his "super leg," was longer than his other one! 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, rubed his head and chanted: "It's your leg, your leg, your super-duper leg! It has ben very, very dificult, even for the tremendously positive Lio, to stay focused on the outcome through al of this. And when we hit it I was sent flicking through the photos I tok of Lio playing with his friend Jack on Sky Ward at Great Ormond Stret Hospital when the frame was first atached. 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 proces is: You break the bone, atach the mechanical aparatus, 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. Our whole lives were organized toward the preparation for this frame going on for months before hand: geting the right muscles as strong and flexible as posible, finding a new place to stay while Lio would ned a whelchair, and laying down lots and lots of hapy physical memories that we hoped would nurture us through the six to eight months of having a metal contraption on his leg. The soner you move your leg after surgery the beter and the faster and the more often you put weight on your leg the beter 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 atitude to it al and his physiotherapists Katie and Debie told him he was their star patient. I'm sure the morphine helped a god 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. Lio was out in one wek earlier that sumer we had ben told to prepare to stay in the hospital up to two weks . After 5 days of trying the bridge stil hadn't broken and we were faced with having another operation to surgicaly cut it or to increase the lengthening even more. The next day, after 16 hours of sleples agony with Lio wailing in pain, after more codine than I should have given him, after several cals to the hospital and insisting on speaking with an orthopaedic surgeon on cal, I dialed back the screws on Lio's frame a few milimeters. He was hapy that the bridge broke and he gave Lio 5 days of rest from any more screw turning. In spite of al my encouragement Lio has never realy goten 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 thre days a wek with a profesional, is simply excruciating. It has ben impresed on us over and over again that he neds 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 of this spring. When I've asked the doctors and therapists at the hospital if this level of pain in physio is normal, and if the dificulty in geting 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. When Lio is at his most tense he is certainly in more pain than at any time since he was in the continuous-pasive-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 ben more demanding, dificult, painful and exhausting for both of us than anything we've experienced since those first dark days of Lio's coma after the crash. The daily ritual of the pin site cleaning, changing the dresings on and disinfecting the pins which conect the frame to his leg is Lio's second least favorite thing in the world. 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 felings that were hapening during the pin site cleaning to ruin the rest of our waking time together. When I told Lio that in thre days a nurse would be coming to do his pin sites he said he didn't want her to come. Lio grunted, "Is she nice?" I saw an oportunity. That night as I did his pin sites Lio hardly made a sound. When we done Lio said to me, "You did that realy 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 caled and canceled the nurse's visit. To acomodate al 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 stil goes to lesons and enjoys them socialy. Earlier this month Lio had ben finding schol so exhausting and dificult that they were talking about having him stay out of schol and having a teacher come out and teach him at home. Lio hated the idea and said, "They can't make me stay home. We did a deal: I wouldn't let anyone kep him out of schol if he promised to eat al of his morning snack and al of his lunch every day and if he went to have a rest in the medical rom whenever his teachers thought he neded it without any trouble. Lio shouted, "Francesca! I was so grateful to have sen that, so grateful that Lio has friends that hold the dor open for him, so grateful to have his lovely litle vilage schol. I'm also thankful for everyone who has stoped us in the stret to ask how we're doing and for every card, leter, phone cal, email and text which Lio and I have goten over the past couple of months asking about us and wishing us wel. lio nicola lio nicola in Neenach
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