Phew! Made it by the deadline .... (2 of 3)

For those of you who've skipped to post 2; she had to have a couple of surgeries after the initial hip one - another one to her L hip/leg, and one to repair her L ulna/elbow.  And was immobilised for the majority of the year following the first surgery.  I'm making this post cover from Oct 2018 - May 2019, because so much of the last year's hell started in May.  (And I'm just getting it in before June this year!)

Year 2:  October 2018 -  May 2019

After Alyssa's L arm fracture was finally resolved - and I'd had her surgeon from Edinburgh check it for me, due to the conflicting information I was given each time I went to our local hospital ortho team - she was able to start getting about again.  Her physio and I were worried that she would lost muscle and strength again after having to be immobilised yet again, for the 3 months it took to repair her arm properly (For anyone who didn't read post 1:  she was using all her weight on her arm, on the zimmer frame, therefore we had to ban her from walking again - as she couldn't walk without it).  What I didn't add to post 1 was that, right in the middle of the arm issues, we realised that her L leg was starting to give her new issues again.  Her leg was "clunking" and we couldn't just feel it when we were holding her leg, but see it happening, as things progressed.  We were very concerned that something new was going on with the L hip/femoral plate, after all the complications she'd already had with it, and I had to arrange to have her seen again by the orthopaedic team.  Eventually, after many more x-rays and examinations, it was determined to be most likely her knee, and due to her thigh muscles wasting because of the extended immobilisation period.  Her bones were also thinning, which was obvious on x-ray, and the only thing we could do was wait for the arm nightmare to be over.  She wasn't strong enough to weight-bear on land ... but we couldn't take her into hydrotherapy because of the cast on her arm!  It eventually came off in September, though another one had to go on for a couple of weeks, because her arm kept swelling (she'd already had a couple of changes but this was supposed to be it off for good.  She was distraught with each and every cast change because the saw vibrations are excruciating to her, and the cast material "burns" her as it heats up, to become solid.  Each lovely member of staff is trained to tell children not to worry, that the saw won't hurt, and it's just noisy, "like a big hoover," but that just taught Alyssa to be even more fearful.  She knew it was going to hurt her; she's had to many casts, so she just felt they were lying to her.  I had to keep asking them not to tell her that, because she knew it wasn't true, and she was starting to panic about anything else they told her.

We got her back to hydrotherapy as soon as the cast was off, and we were relieved to discover that her muscles weren't quite as weak as we'd feared.  She was obviously not safe to allow full weight-bearing, but we did a block of hydro, and then had her start crawling and doing kneeling exercises again.  By the beginning of December, she was able to stand independently again, and began shuffling around the house again.  She wanted to try walking outside but a: it was too cold for her to be out, and b: we couldn't risk her falling outside.  Indoors, we could hoist her if she went down too quickly, or fell.  Outdoors was much riskier, we couldn't hoist her, and she was much too heavy to lift.  So she made the most of being up and about again, and gradually got stronger and stronger.  Unfortunately, as soon as she was crawling about and spending more time on the floor, it wasn't long before the cellulitis kicked in again.  But before she needed admitted for that, she developed another bout of pneumonia.  Despite my best efforts to get her oral antibiotics to keep her out of hospital until at least Boxing Day, she had to be admitted on Christmas Eve ... and we didn't come home until the 5th of January.  Well, we had a brief stopover home on New Year's Eve into New Year's Day, when they ran out of veins and 'hoped' they could get away with sending her home on oral antibiotics, but predictably, she had to be re-admitted for another few days of IV antibiotics before we could come home and stay home.  She had another couple of weeks of oral antibiotics at home - because of her previous history of septicaemia from infections that everyone thinks has gone away - and she seemed to recover fairly well from it all.  

We plodded along for a couple of months with relatively little issues (about time, we thought!) and she even started transferring from her wheelchair to her school chair for little periods of time, once everyone around her was trained, and confident enough to assist her.  Needless to say, the school staff were understandably terrified of anything happening to her, especially as she literally started school there with the broken arm!  They'd been told about her issues and her not feeling pain, but it's one thing to know, and another altogether to witness.  But they were troopers and gradually got more confident about her moving about.  Her physio and I decided in April that it was time to perhaps let her start trying to walk around at school - not in the mainstream area - but in a nice-sized room which she spends a lot of her school time in anyway.  And not when it was full of other children, whom she might bump into, or just fall over.  We made sure we had everything in place at the beginning of May, and decided we'd go for it after the May holidays.  Alyssa's physio was planning to go in on the first day and just give the staff any help or encouragement they needed, but Alyssa ended up with what appeared to be a tummy bug, so in the end it was cancelled.  I think we were probably thinking that finally we were making the progress that we'd expected, many months before.  Sadly, as happens all too often in our lives, things were just about to get much much worse than they had before...  

More to follow in post 3...