It's been a looooooong time coming ...

You know that saying "no news is good news?"  It's generally true, I'm sure.  But unfortunately not in OUR world.  It usually means that something major is going on, and undoubtedly, not something good!  Well, that would be the reason why I haven't updated the blog in a very long time.

First of all, let me start with some good news.  It doesn't happen enough!  The trike is awesome!  She absolutely loved it (especially once I customised it with some Disney Princess accessories!), and we had great fun getting her out and about in it.  I am forever grateful to all of you who donated money, came to our fundraisers, or did other crazy activities, all on your own initiative!  And especially to all the Leisure Bowl staff and gym members, who did a variety of fitness activities (sponsored spin - ouch!) to help us out - you know who you are!  You all helped us raise enough money for the Trike AND for some new equipment for the Sensory Room!   :-)  

And now onto the not-so-good news:

After the frequent hospital admissions we had during the summer months, life was 'fairly' stress-free.  We even managed a little break to Blackpool, and had lots of fun (and spent a fortune!)  ;-)  Shortly after that, my own health deteriorated, which made our lives a lot more complicated, because it meant I had to surrender my driving licence.  Having SO many hospital trips, numerous specialists and therapists to see, as well as just getting to fun places, was suddenly an absolute nightmare!  :-(  With a lot of planning - and LOTS of very helpful relatives - we are sort of organised now as far as hospital visits, and the general to-ing and fro-ing of life.  You really don't realise how much you depend on a car, until you have to get to practically all of Scotland's hospitals, and most of them aren't near main public transport routes!

Alyssa's most recent admission - for her second bout of cellulitis in 7 months (which she again was unaware of until I noticed the fiery swelling at her elbow) - was on the 2nd of Jan.  So 2013 hasn't exactly started off like I had hoped it would!  I asked if she had fallen, though she doesn't always know - because it obviously doesn't hurt when she does it - but she's getting better at telling us if she feels something 'hit' her, or that she 'bumped' into something.  When I noticed the redness and swelling, I immediately phoned her dad and stepmum to see if they were aware of her having fallen that day, but they weren't aware of any injury at all that day.  So I knew straight away that we were headed for hospital.  A 'hot' Alyssa, with any sign of redness, especially one which is swelling in front of my eyes, is an emergency situation!  Even if she is sitting there, playing happily with her toys!  She just doesn't comprehend that she is very sick!

As I expected, it turned out to be severe cellulitis, and her arm swelled up to look like a thick rubber hose.  And she continued to play, and be pampered by the nurses, and tell them when "her arm needed another drink," ... and so on.  I get all the worry and stress, and she finds it great fun to have so many people coming to see her, and have so many new toys to play with!

We were just getting over that, a couple of weeks ago, and life was returning to 'our' normality, when we went to see the Orthopaedic Spinal Specialist at Edinburgh Royal Infirmary for her annual xrays and review.  Sadly, we were disappointed to learn that her spondylolisthesis (where one or more vertebrae slips over others) had deteriorated significantly since last year.  And that we are going to have to put her through major surgery next month, to 'fuse' her spine together.  She has a fairly large gap at the base of her spine now, due to her arched back, low muscle tone, and not feeling pain.  She does not realise how much damage she is doing, just by walking in the position she carries herself in, to the extent that the pressure has caused her already weakened vertebrae to separate.  She *should* be in agony!  But she doesn't even realise there is anything wrong with her.

She will need to have her vertebrae fused together, then be put into a body cast for 4 months, and be confined to her wheelchair for at least the first 3 months of this period.  Needless to say, we are all a bit freaked out by this, as are her school, and most of the other medical professionals that she sees.   The surgery is obviously daunting enough, but the cast and immobilisation are far more concerning!  Not only will she get pressure sores from the cast rubbing on her, and her inability to realise because it will not hurt her (and she will twist about inside it!), but it will add weight to her already weak muscles.  The cast and the immobilisation will cause her leg muscles to waste away, and - by the time she is actually allowed to walk - she will physically be unable to.  And will have to gradually build up to walking all over again.  Just like she had to after her leg cast came off ... and it was only on for 7 weeks in total.  :-(  

I am gutted for her.  Angry at the universe for just never giving us a break.  And heartbroken most of all, because she is 5, and cannot even begin to fathom what the next few months are going to be like.  We have had as many age-appropriate chats as is possible with an 'almost' 6 year old, who doesn't feel pain, and therefore can not understand why we need to 'fix' something ... that she doesn't even realise is broken!  She knows she is getting a cast, and will tell people she is getting a cast "here," and point to her tummy.  And she is aware that she will not be able to walk for "a long time" ... but she cannot possibly comprehend how much her life is going to change, over the next 6 months!  The things she won't be able to do with everyone else; the weight of the cast on top of her tiny body; the frustration at being unable to move about like she normally does; the heat and itchiness of the cast ...... *sigh*  We will have to stay in Edinburgh Sick Kids hospital for up to a week, so I shall be exhausted by the time I get her home, but I'll obviously be happy to see my own bed by then.  She will be completely unconcerned about being in hospital.  Again.  She spends half her life there, and the one benefit of not feeling pain (thank goodness there is something!) is that she never minds having blood taken, having IV's put in, getting any of the observations done, and she will happily 'help' do most of them!  I usually have to intervene to stop her 'helping' from interfering with things!  ;-)

But the cast will also potentially cause her to overheat more quickly than she normally does, as well, so we're going to have to be extra careful.  And work out how to keep her from overheating, when we will not be able to use her 'wet' cooling vests.  Up until now, these have been the best option from stopping her overheating dangerously in the late spring and summer months, but they will now be impossible to use, due to her cast getting wet with them on.  I *do* have a type which uses special crystal ice inserts, put in padded linings, but the school will have to get a freezer to keep the spare inserts in.  And we will probably have to have a cooler with us, everywhere we go.  Oh, this will be so much fun.  :-(  But it has to be done, so we will just have to take it one step at a time.  And the good news (!) is that at least we have caught it at this point, before the spine compression started affecting her spinal nerves, and affecting the use of her legs.  This surgery should prevent this from happening, so we are - in a lot of ways - very lucky.  And we just have to hold onto that.

I hope to update you all again soon, but you just never know, with our crazy lives!  I will at least try to update about how the surgery went, once I am over the insane period that will come with it.  And thank you, for continuing to care about Alyssa, and for checking in on us, like you do!