THE CAST IS OFF!!!!!! We've been in and out of hospital over "the leg" more times than I count in the last 8 weeks (hence the delay in posting, once again!); watching for signs of bone infection, and panicking that there was something else going on with Alyssa's L leg because almost as soon as the cast came off for the first time, her leg started swelling up. She couldn't weight-bear on it at all, it buckled every time she tried to walk on it, and then she suddenly began screaming that "it hurt!" (yes, completely out of the ordinary for her!) started tearing at it, and actually tore the skin open on her knee where she said it was "hurting" her. So back to the hospital we went; then were referred back to the paed hospital as an emergency, had the leg re-xrayed (and it was found to be healing pretty well) but she had another cast put back on for a further 10 days. And then it was taken off again ... 

This time; it didn't swell immediately and - although she was still not able to weight-bear properly - she was able to manage to stand, supported by me or by leaning on things she passed.  And gradually that's improved where she is now able to weight-bear by herself, though it's still not quite what it was before she broke it.  It did start to swell again about 2 days after the cast came off and it became huge!  Every time it got bigger, she'd complain that "it hurt" (again, a first for us!) and she'd refuse to try and stand on it.  Obviously I was very concerned about her leg still not being fully healed properly, and went back and forth with the doctors.  There were questions posed as to whether she'd actually torn a muscle or tendon at the same time as she broke the bone, and that this was what was causing it to be unstable and buckle with the pressure of her weight.  There was also a query over whether she could have a blood clot in her leg (which I stressed about the most, although was glad someone was considering other options ... instead of just saying "well it's not broken any more" ... and leaving it at that).  The level of swelling also worried me, because it wasn't just a little bit swollen, her leg ended up huge, and it spread all the way down her leg to her ankle and foot at times. 

However, Alyssa had her leg x-rayed again last week and the orthopaedic consultant felt her knee joint and leg.  He said that her knee joint was definitely stable, but that she is laying down excessive amounts of bone tissue over (and far around!) the fracture site.  That her knee itself was huge, and this was partly responsible for the swelling because the necessary inflammation and fluid that builds up to allow healing, wasn't able to drain properly like it would normally.  There wasn't enough room round the extra bone tissue inside her leg.  That and the positions that she manages to contort herself into, also restricting the normal blood/fluid flow (see a random example of position, in picture above!).  He felt that she was ready to weight-bear and said he was happy for her to do so, if she was willing to do so.  She was still not confident but we decided we'd work on that. 

Fast forward a week and her confidence - and my level of insanity - have increased daily!  She's now much more confident about using the leg ... but it's now a sort of 'deja vu' feeling, back to when she was first learning to walk and negotiate obstacles/doorways etc.  She's so excited about being able to walk again that she just doesn't pay attention to anything else.  So she's charging about on it (with me constantly reminding her to "walk gently"); smacking herself into doorways/corners of objects etc, and leaning on things which can't hold her weight ... and crashing to the floor in a heap!  And feeling none of it means she simply.doesn't.care!  She doesn't learn from it AT ALL!  Just gets up again; apologises to me (or the body part!) in an automatic-but-doesn't-really-comprehend-why-she's-apologising voice, and carries on.  Usually to the next injury!  She's had more scrapes to her face/head in the last 6 days than she's had in the last couple of years, and she has various bumps and bruises all over her body. 

My upside is that it SHOULD pass again, like it did before.  And getting her to pay attention is the biggest key to that.  And - of course - we now have the in-built padded PINK sensory room, where I can take her when she's just getting ridiculous with her injuries/lack of concentration.  She may still charge about in there (and throw herself about) but at least it's padded, and designed for full-body impact!  There's a significantly less chance of her injuring herself in the sensory room, so we may be spending a lot of time there over the coming weeks.  The other positive is that Alyssa is absolutely ecstatic to be "walking" again, so I can't really complain about that.  It took us so long to get her to walk that I have to be pleased at her little face lighting now she's "allowed to walk!!!!!" again, even if the 'dancing' gives me a heart attack every time!  ;-)  Got to love her positive nature when everything seems set against her at times, and how can I complain if SHE is so happy about the little things?!

Just on an "interesting" note:  I've finally found someone (and her little girl) who are also suspected to have the same type of HSAN as Alyssa!!!  Which is amazing!  The similarities between them are incredible, especially the itch/pain responses they share, as well as the fact that they too can feel "some types of pain" like Alyssa does.  Hopefully I will start to understand more about Alyssa as I get to know this amazing woman, and her beautiful baby ... and perhaps I will also be able to share some tips I've learned in dealing with my seemingly (until now) unique girl!  :-)