Positive news ...... and not so positive news

Ok, so I did really well with the last couple of posts - January AND February .... then I appear to have had a time passing denial period!  Can't believe it's the end of October already, and Christmas is quickly approaching (Alyssa is very excited about that, and started singing Christmas songs around the end of August!).  With it being so long since I posted, you all know what that means - it's going to be a novel!  Sorry!  :-)

First things first; starting with some pretty great news.  I recently nominated Dr Paula Beattie - one of Alyssa's specialist doctors -  for a Scottish NHS award, because she's been pretty amazing throughout Alyssa's life, and is currently the longest-involved doctor in Alyssa's life.  I believe we first met her when Alyssa was around 10 months old - back when she was asked to "have a look at this childs' neck, while she's in for her endoscopy ..."  Little did anyone realise how much of an issue the skin tearing would become, or that it would be one of the most in-depth issues Alyssa was to face.  At the time, it was just presumed that she had some 'itching' and had managed to wound herself.  We now know that it was partly due to her not feeling pain, despite having a chronic and constant itching sensation, and also down to her being physically incapable of doing the damage she's gone on to do, at such a young age. 
Anyway, I was informed a few days ago that Paula was one of the finalists for the doctors award, which I'm delighted about.  She absolutely deserves it!  She's a consultant dermatologist, which is a doctor who specialises in skin complaints and disorders, for those of you who aren't aware.  But she has gone out of her way so many times to see Alyssa when it wasn't scheduled, e-mailed me constantly with advice (at all hours - I'm beginning to think she never sleeps, and I thought I was close to holding a record there!  She's even e-mailed me from abroad!).  She's liaised with the other hospitals about which antibiotics should be being used after her septicaemia - which was invaluable to the spinal team at Edinburgh as that was obviously not an area they were specialised in dealing with, and just generally been about whenever we needed any form of help.  She arranged for x-rays of Alyssa's elbow to be done, when they weren't organised after discovering that Alyssa had the abscess at her elbow from the cellulitis, and it hadn't been done elsewhere, and reported to me with the results.  If I have queries about a any issues which aren't technically skin-related, she will take it upon herself to contact whichever specialty should actually be involved, and get back to me with whatever information is needed, and treatment is recommended.  And she also has to constantly think outside the box when it comes to attempting to manage Alyssa's neuropathically-caused itching.  Alyssa doesn't always respond to medicines like you or I would, because her nervous system and body systems don't work the way they should.  Paula is always conscious of this, and will attempt things that most doctors haven't even thought of, in an attempt to relieve Alyssa's discomfort .... and help me keep my sanity!  
We used to have the most fantastic paediatrician as well, who has sadly emigrated to Australia now, and who was also invaluable in Alyssa's most difficult and trying years.  But Paula was also available for advice which the paediatrician needed, and it made life all round a little bit easier.  When Alyssa's paediatrician went off shorter-term on maternity leave, Paula more or less 'adopted' us, in her place, and has never really stopped being that care provider, especially now that the paediatrician has emigrated.  As I'm sure you must be aware, having a child with such a rare condition can be really hard-going at times, and very stressful.  Especially when another 'new' aspect rears it's head, and nobody knows what to do to make it better, or at least try to improve that aspect in some way.  There have been many times where I have been really unsure who to even contact, because Alyssa is so complex, and it is really unfair to see GP's about her issues, let alone out-of-hours doctors who don't know her, or her history.  At these times, Paula is just an absolute godsend, and being able to e-mail her at any point and know that she'll reply as soon as she is physically able, is worth more than anything else in the world.  
I really hope she wins at the Health Awards, which are scheduled on the 6th November (next Thursday), because I can't think of a more deserving person.  I'm not sure even she realises what an impact she has on our lives, or how much stress she helps us avoid, by doing what she does.  And I also believe that we are not alone in her treatment of us.  I have absolutely no doubt that she treats her other patients in the exact same manner.  Keep your fingers crossed that she wins, because she is one of the best and most caring doctors we've ever met - and we've met hundreds in Alyssa's short life!  I've been contacted by the Daily Record newspaper (a big newspaper company, for those of you in the States who haven't heard of it!) who are holding the awards, and interviewed about my nomination.  The journalist informed me that it was a really strong nomination (and I'm pleased by that because I literally found out about the awards 30 minutes before the closing time!), so hopefully I've done enough to detail why Paula should win it.  Obviously I could go on for hours about her - and Alyssa - so I did my best to explain how Paula has helped us, and then naturally had to go into lengthy detail about Alyssa's condition - and all it's ins and outs.  What I didn't think about when I nominated her, was the publicity aspect of it ... and the fact that I now have to have photos taken for the newspaper article.  Gah!  So today I have the fabulous act of having to pose for a picture, which I shall hate .... with Alyssa, which she shall love!  She's certainly not camera-shy!  ;-) 

And onto the 'not so positive' news.  Alyssa's had another couple of bouts of cellulitis (which Paula has obviously been in charge of!  We tend to get a week or two's worth of antibiotics from other doctors - which are just not going to do anything, in Alyssa's case.  So Paula's my first contact whenever I see that it is starting up again.  Anything to avoid another septicaemia episode!).  Fortunately, they haven't come to much, and the most recent one was a 'new' incident, from her having yet another bad landing, in one of her many falls. So at least that was a different episode from the recurrent ones she keeps having from the one which caused the septicaemia last year.  And it's been fairly easily solved.  Well, at least for now.  It could be grumbling away underneath again, but we're watching for that, and she's had another couple of extended antibiotic courses, in an attempt to avoid such an outcome.   She also 'broke' her leg again in one of these falls, just before summer term finished up - and it took 3 1/2 weeks to have this confirmed on x-ray because it was a hairline fracture, in the same place where she fractured her tibia at age 4.  Because she falls so often, and it's never obvious if she's done any damage, we've had to introduce a 'falls diary' at school, so that each and every fall is recorded.  This allows me the opportunity to look back at school periods, when I'm not witnessing her bumps and bruises, in case I have to backtrack a potentially serious injury, and work out what she did to herself "this time."  It is so easy to miss injuries, because she doesn't pay attention .... because it doesn't hurt.  And another aspect of the falling is that because it doesn't hurt when she lands, she doesn't take care NOT to fall, nor attempt to protect herself when she goes down.  So she'll often land very badly, in awkward positions, which also increase the likelihood of a serious impact.

I also got a bit of bad news a few weeks ago (and I'll be honest, I usually know her so well, and what's going on with her, what we're supposed to be watching out for etc.  So this was a bit of a shock to me, and took me a few days to adjust to the new information).  We saw the neurologist for a check-up, and he asked us to follow him along the corridor to his room.  He was naturally watching her walking/standing positions, and immediately said that he felt she was waddling far more and that she was much more lordotic (arch-backed) than the last time he saw her.  I said that I agreed, and said that she's been falling more againg lately, but that we go through this every time she has a growth spurt because her centre of gravity changes.  She has to relearn her walking position each time this happens.  Then he did his usual tests:  asking her to stand on one leg, jump without holding onto something (she did pretty well, for her!), get up from the floor without using her hands etc.  She was then allowed to go back and play, while we discussed how she was doing.  He said that he was concerned that she was weaker than when he had seen her previously, only 2 months before.  And that worried him because he had already felt that she may have significant muscle weakness when puberty kicks in ... which can apparently start as early as 10!  She's already 7 1/2!  I was a bit stunned by this, as I've always known she had poor muscle tone and very little muscle growth, but I hadn't actually noticed that she was weaker - always put it down to something else.  Now she may have been having a particularly bad/tired/overheating day, and it could be the growth spurt, or a combination of all these things, but he wants her referred to the neuromuscular clinic for some specialist assessment.  He's not sure that they will be able to actually do anything about her muscle weakness, but feels that they are the best people able to help her.  Perhaps managing to strengthening her muscles now, before we get to the point where it's becoming serious.  Not the greatest news, but at least we get to be pro-active about it, and can attempt to do something about it now.  Trying to look for the positive is the only way to keep functioning, from my point of view.  Alyssa, thankfully, is still oblivious to all of the things going on with her, and still doesn't really understand how different she is from everyone else.  She does know her limits, and most of the time she's okay with that, but there are starting to be times where I can see some unhappiness about it.  I knew that day would come, but for now those moments are still very brief, and her witty personality is still as charming as ever!  :-)

I shall post back when I hear the outcome of the Health Awards (I promise!!), and I shall make a physical note (not a mental note, because we know what happens there!) to update this more regularly.  And save you all from having such a load of information at once.

As always, thanks for reading and staying up-to-date on all things Alyssa.  I'm sure she'll be very grateful some day, to know that so many people care about her x