I will be upfront, and say that this is mostly a splurge about the responsibility of decision making, and about me worrying.
And please forgive me for this - I am in bits and i just can't talk to anyone about it, so thank you for listening.
DS has no fibula, a missing ray in his foot, and currently a 5cm discrepancy between the length of his 2 legs.
In his first year, we had to decide between courses of action, as he was a borderline case between what could be recommended. We had to decide whether to go for a below the knee amputation and a prosthetic leg, or surgery and bone-lengthening. We sought a second opinion, met parents and children expeiencing both, and our consultant was extremely helpful, but would not 'push' us one way ot the other. Bone lengthening is very confronting, whilst prosthetics have about the same outcome in terms of mobility, for DS's condition.
We went for bone lengthening because the 2nd opinion was v much 'we can take this on, no problem' about the high degree of discrepancy, and since it was beginning to be clear that there was a discrepancy in the femur length, not just tibia, we could have agreed to amputation, only to find that lengthening in the femur was necessary, anyway. However, given the level of surgery, and length of time in fixators, when I once said to our consultant that a prosthetic would perhaps be the way to go, she gave me a look which included everything but a nod.
Now I am worried that we took the 'easy way out'. It was hard trying to make a decision objectively with the thought of my boy's leg going in an incinerator. But we also considered what he would prefer when he hit his 17th birthday - his own leg or a prosthetic.
Surgery to enable him to walk was succesful, and now, with a shoe raise and splints, he is a most active litle boy. His joy since Christmas is to do all the dance routines from Charlie and choc factory.
BUT at our consultants appointment last week, she was concerned that his foot is reverting. She is talking about more surgery to graft tissue from somewhere else into his ankle to supoprt it. She is concerned that the articulation of his ankle is not what she hoped it would be (some bones that should be articulated are fused). The discrepancey in his femur in increasing, and he is at the limit of the amount of shoe raise he can use.
She has arranged an MRI scan, to investigate the bones and how they have grown, and she wants him to use splints in the day as well as night. i am worried that this will restrict his movement (they can't be Dynamic ones) - i know it will - he had them when he was younger.
And I am worried that in the end, he will lose his leg after all - but at an age that it will be far more traumatic for him.
Of course, it may be all right again.
I know we did the best we could in trying to make the decision, but this responsibility is now wrenching me apart.
He has to go into hospital in march, and I can't even tell my friends or my Mum. I just can't open my mouth to talk about it.