So - once again - it's been an absolute age since I posted on here. But in all honesty, it wasn't completely my fault because I've had technical problems accessing the blog. From what I can understand, it was something to do with changing servers and there being multiple problems with that. As our lives are a bit crazier than most, I checked on and off to see if I could get access, but then would get sidetracked by yet another Alyssa-related issue, and completely forget to try again (and again). So apologies for the (probably the longest since starting) delay in updates. And here's an up-to-date picture of how much she's grown!
Ok, so sadly Paula didn't win the Doctor award, but said she was really happy to have been nominated and be one of the runners up. (She also said she was relieved, when she realised that she'd have had to go up on stage and have her photos taken!). I'm disappointed that she didn't win, but glad that she was still just as happy about being there, and that she had a great night.
On the back of this, and unbeknownst to me, the journalist I'd spoken to regarding Paula's nomination was so taken with Alyssa's story that she then put Alyssa forward for a "Little Heroes" award, hosted by the Daily Record and Lidl! Alyssa was chosen as one of the 3 winners! She was taken out for a shopping trip with the 2 other little heroes, and treated to free toys, clothes and got to pick any Build-A-Bear she wanted (naturally, she chose a Frozen Elsa bear!). She had an absolute blast that day, then a couple of weeks later, we went to the ceremony evening at the Thistle Hotel, in Glasgow, It was a brilliant evening, where we met so many amazing and very award-worthy people! Alyssa was very spoiled, and - unlike Paula at her evening - we had to go on stage to collect Alyssa's award, and pose for photos! I wasn't so impressed with that part, but Alyssa was in her element!
Here is a picture of the beautiful award she received (too heavy for her to carry, which made us all laugh!) :)
And here is the Frozen "Elsa" bear - who sings "Let It Go" when you push her paw :)
She has had a lot of ups and downs - naturally - as it has been almost a year since I was last able to post. If I posted a year's worth of 'updates,' then it really would be a novel! So I shall post some things just now, and more over the coming weeks, as I think of them. I am determined to post more regularly - now that I can actually access the blog again!
Her post-spinal x-rays looked good, and she has since had another set done, where the spinal surgeon still does not see any negatively progressing signs. So he is very happy. She is due for another set to be done in December, so hopefully we will continue to get good news.
She is starting to feel "stinging" sensations! She had the first one a few months ago now - in her back. I paid attention to it, but didn't initially think much of it, because she does get random shooting (and as yet unexplained) nerve pains, but for the first time ever, she was able to tell me EXACTLY where it was 'sore!' She could actually tell when I pressed on a specific area if it was correct or not, and when I was past the borders of that area. Naturally, I was pleased but also terrified, because she was so adamant, that something was clearly wrong. Had to start backtracking what she'd done the previous day or two, and suddenly realised she'd managed to get on the trampoline, and had slammed herself down onto her bum! I started panicking that she'd done some spinal damage, and - because she was still complaining about the stinging, on and off, I phoned the spinal team. After a chat with the spinal nurse, and - realising that it was Alyssa ! - she told me to bring Alyssa up the following day, to see the spinal surgeon again. This is why she got a more recent set of spinal x-rays, and I was terrified of what they would show. Fortunately, she had not damaged her spine, and it still looked good. But when he examined her, and she told him where the stinging sensation was, he said that she did indeed have swelling (which I had not noticed!), and that he thought she had pulled some of her back muscles. That he was happy that it was nothing more serious, would resolve in a few days, and that she was to "rest" for that time. I laughed (as did he!) and I told him to tell ALYSSA that!
She then had another "stinging" episode about a month later, in her elbow - the day before the summer holidays actually started!!! We NEVER go into the summer holidays without some sort of medical drama! She didn't make the last day, because she was in a sling! Typical.
She'd fallen off the kitchen chair that morning (and smacked her head off the kitchen unit, which was all I saw at the time, so had warned the school that she might have a bump etc there). She proceeded to do gym, and all the other 'regular' stuff at school that day, came home and about half an hour later, started saying that her arm was stinging. When I looked at it, it was twice the size of her other one ! and I honestly thought she'd broken it. After backtracking to what she could have done, I realised that the way she'd fallen that morning, she must have flipped over and actually landed on her arm, as her head hit the unit facing forward. So off to A+E we went. That was quite surreal. Alyssa actually acted like someone who feels pain 'normally,' though not consistently. She would complain her arm was stinging, then ask mum for her Nintendo DS to play and squish her arm down the side of her wheelchair buggy, in order to play it. Then she'd complain it was stinging again. We always go through at least a couple of doctors at A+E because of her inability to feel pain normally - and this was new to us too, because she's never even hinted at anything like this, not even with her previous fractures! - so it was a very confusing and surreal experience for us all. And clearly a bit of a shock to Alyssa's system, to suddenly be feeling this strange and disturbing new sensation. Eventually told that they didn't think there was an elbow fracture, but couldn't be sure due to her age etc, and to come back on the Monday as an outpatient. She was given a sling, which she didn't want to wear, until she realised that it made the stinging better, and we were able to go home. She was pretty miserable the following day (Friday) and didn't seem to know what to do with her arm. It really was a most confusing time, for all of us. I'm not used to seeing her feel any pain, and she was completely overwhelmed by it all.
However, in true Alyssa style, it didn't last long. Nor did it go as smoothly as just 'stopping stinging.' By even the afternoon of the Friday, I was suspicious that her arm was actually swelling more, and getting hotter. And by the Friday night, I knew she had cellulitis again! She by this point no longer cared about the arm, and would not rest it, nor remember to stay off it (ie constantly rolling about on top of it, leaning on it, lying on it etc etc) and I knew we were headed to hospital again. But as it was Friday night, and she had no temperature this time round, I decided it was better to just stay at home and go in the morning. She is always safer in her own special bed, than in any hospital one, especially with a swollen, suspected broken limb. And we went to the ward first thing on the Saturday. There was no doubt that it was cellulitis; it was hugely swollen, and hotter than it's been for a long time with her previous episodes. But it was still unclear if she had a fracture as well, or not. I explained about the stinging, and that it had only lasted about a day or so, and that once it was full-blown cellulitis, she had gone back to not feeling anything at all. So I felt that she HAD had an injury of some description, but it was no longer upsetting her in any way, and she was now acting like she usually did with cellulitis. ie not caring at all. She was put onto IV anbibiotics as usual, and we stayed until the Monday. The doctors and I were happy by that point that the cellulitis wasn't spreading (her skin refuses to turn red now, which is really quite unhelpful, so we have to go on purely the swelling and heat of the affected area) because it wasn't hot any longer. It was obviously still swollen, as that can take weeks to go down properly, or in her anyway, but as we had the orthopaedic outpatient appointment anyway, it was felt best to stay until that, and make sure the orthopaedic specialist was also happy for her to go home. She got another elbow x-ray, and he said that he also didn't 'think' there was a fracture, but with her history, and her clear lack of pain sensation (back to her normal 'not feeling it' by now), he didn't want to rule it out. He said it was probably that she had either a very slight fracture over the tip of her elbow, or a bone bruise. I believe the same, and that it triggered a cellulitic reaction, because it is the same elbow she has been admitted time and time again with. The tissue there is very prone to inflammation now, and recurrent bouts of it, and it was too coincidental for it to suddenly appear, with no outer wounds whatsoever.
Thankfully, it resolved fairly quickly. The swelling did take a few weeks to return to normal, but at least she was able to start enjoying the summer holidays ... and getting up to her usual mischief! And we can at least partly celebrate that she is starting to feel "something" at times, when she has done some new injury to herself. Not all, and she's still mostly unaware, but it's a start. Here's hoping it's the start of her getting to know her own 'normal' and pay more attention to what her body is trying to tell her!
I'll post again soon. Figured that's enough reading for one post! Thanks for reading :)
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