Phew! Made it by the deadline.... (1 of 3)

Ok, so the deadline was pretty much set by me, and ended up being 3 years.  
3... years.  
That seems insane.  And yet, here we are:

To those of you who've followed our story for a long time, or who see posts on Facebook, you'll know that "no news is good news" has never applied to our lives.  No news generally means things are not going well, and I either don't physically have time to update, or mentally just can't face it.  Both of those scenarios have occurred repeatedly over the last 3 years, in what has felt like an eternity at times.

So, as it would be a ridiculously long post to try and update 3 years worth, even in summary, I shall attempt to break it down into 'years.'  That way, you can get as much or as little detail as you like, and can skim to the last year, for a quicker catch-up, if you wish

Year 1 - June 2017 - October 2018:

Alyssa's bilateral hip reconstruction took place in June of 2017 and the operation went well; her surgeon was very pleased by the outcome of it.  Alyssa went into a full body cast, as we had previously discussed, for almost 6 weeks.  I won't even pretend that it was fun, or easy, in any way.  Alyssa adapted to it really quickly, far more quickly than the rest of us.  But it was awful.  There is just no way to keep a cast clean which is from ankles to ribs, and despite our best efforts, it was a state when it finally came off.  Fortunately, her skin wasn't as badly damaged as we thought it would be, and she coped relatively well.  When it came off, however, she was as itchy as we expected, but she also had new sensation issues which meant anything bumping into the bed, or the safety bars banging down when lowered would send her screaming.  Definitely not something we were used to.  And something which hung about for a few weeks, although it felt like longer.  It did gradually improve.  

Her physio was involved throughout, as always, and started Alyssa with strengthening exercises as soon as Alyssa was able to tolerate having her legs touched (sensation issues, not pain, as such).  Alyssa progressed well, with us almost immediately having to restrict her, because she we knew she would do too much, having no post-operative pain, only new sensory ones to deal with.  Things seemed to go well until the middle of August, when Alyssa thought it would be a good idea to try and pull herself up into a chair.  She managed.  The first time.  Then she decided to do it again, and got stuck.  With all of her weight on top of her L leg, which was trapped underneath her.  I managed to get her out, and she still seemed fine ... until a few hours later, when I was notified by her carers that her thigh was swelling.  And then she started to scream!  

Alyssa screaming means something is very wrong.  And that episode became the first of what was to become many times where we realised she was now feeling 'pain' - or her equivalent - when things were swollen.  (Whether it was from the pressure, or whether it's something to do with an orthopaedically-related swelling is still unclear, as she has since had cellulitis again, and been unconcerned about the size of her arm).  I rode out the evening with her screaming intermittently, because her condition is so complicated that taking her to hospital every time would mean being there almost every week.  I need to have a rough idea of what's going on, before I even attempt to have her examined, because doctors have very little to go on.  They're usually looking to assess a pain response, which she doesn't usually have.  And even when she does, it's not a typical pain response, and can't be relied upon.  As she continued to worsen, and the "shocks" she feels when something is wrong increased dramatically, I knew she had done something to herself, so we headed to A+E to figure out what was going on.  

The titanium plate in her L leg had snapped, and the sharp ends were digging into her thigh.  One of the screws had already come loose and was tracking up her leg, and another looked unstable.  It seemed unlikely that she could have snapped the plate from just getting stuck in a chair, but it was the only thing she had done, as she was still not able to weight-bear, and wasn't left unsupervised for more than a couple of minutes at a time.  The doctors contacted her surgeon at Edinburgh, who called me to ask if Alyssa had fallen, and I explained that all she had done was try to pull herself into a chair, gotten stuck, and then her thigh had started swelling.  He didn't seem convinced, but agreed that she needed to be seen as an emergency, and we were seen by him a few days later.  He appeared to have convinced himself that her leg might still heal as it was, because it had been almost 12 weeks since her surgery, and that would normally be long enough for a decent amount of bone tissue to have formed.  I wasn't convinced this time.  He still didn't really understand the difficulties caused by her pain insensitivity at this stage, though sadly, that was about to be the start of a nightmare for us all.  By the time he x-rayed her, just a few days after she'd been x-rayed locally - and despite not moving out of her bed the entire time - another screw had come loose, and tracked up her leg, and the plate edges were separating further.  He was very shocked, but still seemed to think that the situation might still correct itself.  And so began almost 2 weeks of debating about whether to go in and remove the broken plate.  I was getting frustrated because I knew that wouldn't happen (too many years of experience) and because she could literally do nothing.  She had less quality of life than when she'd been in the body cast!  He agreed to operate, and initially mentioned just removing the plate and leaving her leg as it was, which really freaked me out.  He still didn't understand that - in a child like Alyssa - you have to go overboard to protect her - because she won't protect herself.  I knew that she would just try to get up on that leg again, and do more damage, before we inevitably had to go back in and again, and have a worse state to repair.  I reminded him that, whilst the x-rays may have looked good - the soft tissue damage wouldn't be obvious on x-ray, and it was simply impossible that a snapped piece of metal wasn't causing constant damage to the muscle in her thigh.  The sharp ends were having to rotate into her thigh every time we rolled her in bed, which we had to do.  So he ordered a special new plate (he didn't see the point in putting a similar one in again) and we prepared for emergency surgery.

To say that the poor man was traumatised when he returned from theatre would be an understatement.  I've never seen a doctor so shocked, and I've seen many taken completely by surprise at what Alyssa has managed to do to herself, and carry on.  He looked absolutely horrified and told us that when he opened her leg, it "looked like an explosion had gone off inside."  I didn't have the heart to even add anything to it, because it was clear that he had finally gotten the message that Alyssa is like no-one else.  And the pain insensivitity affects not just the injury itself, but the healing process and recovery process.  The rep from the company who makes the plates had also been present during the operation and simply said he couldn't understand how the plate could have snapped, or how the screws could have come loose, because they 'lock' into the plate, as they are screwed in.  What baffled them more was that she'd managed to snap a titanium plate, but her femur was still intact.  So she literally snapped titanium and not her bones!  Wonder Woman, eat your heart out!  She was given a strict immobilisation plan (no weight-bearing at all for a minimum of 12 weeks) and he saw her at least monthly up until we reached the 12 week mark, but she still didn't manage to weight-bear for almost 8 months from the date of her initial surgery; the swelling in her leg was just too much for her to lift her leg.  For whatever reason, her body now swells beyond what would be considered 'normal' with any injury, and I believe it is her body's attempt to protect itself from her.  The rest of us would naturally avoid using a limb which was injured because pain would limit our ability to do so.  With her not having that seemingly annoying sensation, her body is left with little defence, and swells to the point where she can no longer use that limb.  Because she had begun to feel pain from swelling meant that, for the first time ever, we had to deal with 'pain' on a regular basis.  This by itself overwhelmed her because it was so unnatural to her, and her brain couldn't cope, and neither could she.  She was very good at putting on an appearance when people visited her, or her brain was distracted a lot of the time because of it, but she became very emotional a lot of the time.  

We made it to March of 2018 with slow progression from being allowed to crawl, to then managing to stand (with the aid of a standing frame, initially) and by the beginning of May, she was managing to shuffle around the house with a zimmer frame.  Which was actually really cute, because none of us had ever seen one so tiny!  She became more and more independent as the weeks went on, and we had to begin restricting her again, as her confidence grew.  Unfortunately, despite telling her to wait for me to help her, she tried to get out of bed by herself, slipped, and fell out of bed - taking my laptop table and laptop with her.  I was literally in the same room as her and she couldn't wait the 30 seconds or so it would have taken me to get out from the table and help her.  She immediately shouted that she "was fine!" ... and appeared to be so, until 4 days later, when her L elbow began to swell.  Turns out that she had smacked the underside of her L arm on the table when she fell out of bed, and snapped her ulna!  She had a half plaster/half bandage cast put on at A+E that Saturday and I was told that it was to be on until the Monday, to allow the swelling to go down, and then a solid one would be put on then.  Alyssa initially had been 'sore' when her arm swelled up, but I knew that as soon as the swelling went down, she would go back to trying to use it normally.  And that is exactly what happened.  Even by the Saturday afternoon, she was leaning on her elbow, smacking it around, and she literally spent the entire weekend trying to rip the cast off!  She kept complaining that it was "annoying," and that she "couldn't use that arm."  I explained - multiple times - that that was literally the point of the cast.  To stop her from using it!  She said she wished that it was a splint instead, because then she could just take it off.  I said that was exactly why it wasn't a splint!  I'd explained to the local ortho that not feeling it would affect it's ability to heal but, as is common for orthopaedics, in our experience, this was taken no notice off.  Despite the ends of her ulna still being displaced (separated) in the cast, everyone we saw seemed to think it would heal, without the need for surgery.  We argued for 4 weeks, and on the very night before she was due to have the last consulation before agreeing that surgery may be necessary, Alyssa was literally up until 2am, smacking her arm off of her bed ... because it was itchy!  Unsurprisingly, when she had x-rays the following day, the ends of her ulna were separated even further, and her elbow was dislocating.  Surgery was booked immediately, and she had another metal plate added to her collection.  In total, from start to finish - and including the operation period - she was in a cast for 13 weeks.  Her elbow is still not normal, and will never be normal again.  But she can use it, and it's not dislocating constantly, as they feared it might do.  

All of the arm stuff also put paid to any walking she was able to do, however, as she was putting all of her weight on her arms over the zimmer frame if allowed to walk.  So she ended up immobilised again, for another 3 months.  And taking me over the "year" that I was planning to break these posts down 
into.  How very typical of her!  

More to follow ...