Welcome to Alyssa's blog ...

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Central Scotland, United Kingdom
My name is Moira, and I hope to share with you what my daughter's life has been like so far ... so you can all truly understand and appreciate the gift of pain, which we take very much for granted! Alyssa does not feel "peripheral" pain, which means she does not feel pain anywhere other than internally. This has led to many unintentional injuries and self-mutilation. My aim is to not only find others like Alyssa, and help those who may be going through what we are, as well as raising awareness about this condition, and how feeling pain is actually a GOOD thing! I am thankfully now part of a support group run on FB which is an amazing group of people, who all have varying types of experience with pain insensitivity. I can be contacted directly via understandingalyssa@hotmail.co.uk

Self-injuries to date:

The following will give you some idea of what Alyssa has already done to herself ... so far!

* Knocked a few of her own teeth out while "teething"

* Caused huge ulcerated sores in her mouth, from "rubbing" her teeth on her tongue and inner cheeks

* Bitten straight through her lower lip - didn't even flinch!

* Chewed the end of her tongue off, resulting in emergency repair and incisor removal

* Had tongue repaired, then began chewing the side of her tongue as soon as her molars erupted

* Chewed a finger almost down to the bone

* Torn entire patches of skin off, and is scarred fairly extensively as a result! :-(

* Broken both feet - and I had to argue with doctors for almost 10 weeks with one of them, because they didn't believe it was broken! Even a lot of doctors haven't heard of Pain Insensitivity!

* Broken her left leg, just under the knee, and walked about on it quite happily. Took us at least a couple of days to realise, because we aren't entirely sure how she broke it. And it didn't give way until after she'd already been telling me - in quite a bemused voice - that "her leg was moving, all by itself!" I now know that is Alyssa-speak for 'something is broken! Get X-rays immediately!'

* As a result of the biting injuries (and much deliberating!) the decision was made to remove all of Alyssa's baby teeth, as and when they grew in. This occurred up until her very last molars, when it was decided that we should try "crowning" her molars. Thankfully, it did the trick. And she got to keep her baby molars. We managed to save her upper adult incisor, but she now has a new lower incisor, which is causing a lot of problems. She has had all the dental assistance that she can really have, at this point, so now we wait.

* Required spinal surgery to correct a vertebral slippage issue, which she was completely unaware of. The op itself was pretty straightforward. The post-op period was lengthy, and anything but fun

* Developed septicaemia from one of her many episodes of cellulitis (usually from tiny wounds she doesn't know she has, which bloom into cellulitis quickly), because nobody realised it hadn't gone away, and was just grumbling away as an abscess in her elbow. When she collapsed, it was scary!

* Managed to dislocate her left hip, falling from her trike .... but it took us 4 months to realise, because she didn't feel it!

Tuesday, 7 February 2017

Update 2 of 3 .... The "Florida post" (LOTS of pictures!) :-D

I thought it would be nice to only post some nice things, for a change.  I'm still not entirely sure how we actually made it (and I'm now glad we did - but that's for update 3 ... or now possibly 4!), but we did.  And although it was very stressful for me, Alyssa had an amazing time at Walt Disney World.  She was just in heaven, pretty much all the time!  

We met the loveliest family on the plane on the way home.  Those of you who know Alyssa well will know how much she absolutely adores babies!  And that she can talk for Scotland!  We had a very cute baby in the seats behind us on the flight so she pretty much chattered the ears off the poor little girl ...... and her mum, all the way there!  Wee cutie's name was "Orla," and Alyssa was just in love with her.  The poor family were also in the same exact seats on the return flight too!  I believe I ended up enforcing a nap on that flight - so that Alyssa would sleep AND so that Orla and her family would get a break from her constant nattering!  Her mum and I have become Facebook friends since then, however, so she couldn't have been too bad ...... ;-D

We stayed at Disney's All-Star Movies Resort, and Alyssa's eyes were like saucers when she realised that the buildings, decor and rooms were all made "like the films!!"  It was really cute to see her in total wonderment at it all, and we hadn't even made it to the Magic Kingdom yet!  She was absolutely hyper, but I can't say I blamed her.  We waited a long time to get there.  

This is the first night, with her PINK Magic Band on, stuffing her face with pizza ... and drinking out of her Mickey straw!  :-) 

And just outside our hotel room

We headed to Magic Kingdom the first day (and most days!) and she was just amazed by the whole place.  We've been to Disneyland Paris, but it was a long time ago now, so she didn't really remember it very well.  I was at least prepared for the layout, as Main Street is pretty much the same there.  Her face when she saw Cinderella's castle was just a picture (I feel I'm going to repeat myself a lot in this post, as she was amazed and delighted by pretty much everything we saw, and I'm going to run out of descriptions of her!), and I think she thought that was as cool as it could get ..... until the first parade started!  She was just in her element!  She was still recovering from the dislocated hip / new medicine combination so she was in her wheelchair and couldn't join in with the dancing etc, but she was clapping, cheering and singing along with Jessie, Minnie, Mickey and the Toy Story characters.  It was the happiest I'd seen her in a very long time - and she's usually pretty cheerful, considering everything she has to deal with.  Then we went for a wander, to see the whole park, and work out where things were, and what we actually wanted to see or do.  

Pics of us in front of the castle (VERY rare photo ops of me!  I prefer to be behind the camera!) 


We did visit all of the parks (except the water ones, because she can't go into water unless it's a very specific temperature) but Magic Kingdom was by far our favourite!  I couldn't possibly post all the pictures we have from there, but I'll post some shots of all the characters she met while there ....

Her absolute favourite part of the entire holiday - and pretty much our reason for going!  "Elsaaaaaaaaa!"  :-D

Her 'other' favourites 

All of the other characters who she had to fill her "autograph book" with, and was excited to see ... just not as excited as she was to see the princesses above!



As you can see, meeting characters was high on our list of things to do!  And she had an absolute blast meeting them, even if she did become suddenly 'shy' when she met some of them.  We also went on The Dwarves Mine Train, which she initially looked absolutely terrified on, but soon decided that it was her absolute favourite ride.  Queued for it once without a fast pass - never again!  It took about an hour and 15 mins to get to the front of ride, which is over in about 90 seconds!  

We were also on It's A Small World After All, the Carousel, Winnie the Pooh's ride, the Magic Carpet Ride, Dumbo the Flying Elephant, Peter Pan, and The Little Mermaid rides many times.  And we went on the Teacups ride a few times .....  I even took a selfie (!) of us, being silly on it!  

We had lunch at what became MY favourite place - Belle and the Beast's castle!  I was dying to see inside it - even if she wasn't, though she didn't fully understand what it was until we were inside!  I took so many pictures of it because it was truly amazing.  So much of the film was present, including 'The Rose.'  There was also a really cool picture of the Prince who turned into the Beast when lightning flashed inside that section of the castle!  Only for a minute or so - to the point where it was really difficult to get a picture of it, but well worth the wait for it.  And a lovely cast member took a picture of us outside the castle :-)


The parades and shows were phenomenal!  No other way to say it!  I immediately decided I was ditching my life, and moving there to become a singing, dancing cast member!  :-D  The parades were all amazing to see, and she would have watched the same ones every single day, if I'd let her.  There's so much to do and see that it's just not possible, not to mention the one we couldn't really watch (Elena's welcoming) was always at 3pm, which was just far too hot for Alyssa to be outside at.  There really wasn't enough shade at a close enough distance for her to see Elena, which she was a bit disappointed about, but understood that she would overheat if she sat out in the sun at that time, even with her cooling vest on.  

Pics of her during some of the parades 

 She was also chosen on one of the days to be "Chef of the Day" at the Main Street Bakery!  The loveliest lady came across and asked her if she liked to bake because they were looking for someone to help make some cookies and sweets.  She was instantly excited and practically jumping up and down in her chair!  (She bakes cakes and cookies with her gran.  I can not and do not bake!)  She had so much fun ... and made so much mess!  There was chocolate everywhere, though the ladies who were helping her didn't mind at all, and told her to make as much mess as she liked.  The end result was fab.  2 lovely Mickey Mouse shaped chocolate rice krispie treats - one for her and one for me.  I believe she finished their M&M's stash on one of the cookies!  ;-D

We went to Mickey's Not so Scary Halloween party.  I was initially surprised by the cost of it (one night cost 1/3 of what I paid for the 2 weeks' park tickets!), but as we neared the holiday and almost didn't get to go (again), I decided that I didn't care what it cost.  We were doing it, and we were going to have a ball, and worry about the cost when we came home!  Who knows when - or if - we'll ever make it back again, considering Alyssa's never-ending health issues.  I was absolutely blown away a couple of weeks before we actually went, however, as some of my very good friends (aka my "gym family) had clubbed together secretly, and gathered money to cover the cost of our MNSHP tickets, with some leftover for Alyssa to buy a costume to wear!  It was very unexpected, and I'm very grateful to them for being so thoughtful and kind!  

Mickey's Not so Scary Halloween Party was amazing.  I've never experienced anything quite like it.  I'm not a fan of Halloween usually, as most of my friends know, but there's just nothing like Halloween in the States.  They really go all out for it, which we don't do here.  The costumes being worn were brilliant, the kids got to go trick-or-treating all over the park, and it was just so much fun.  Alyssa is very fussy about sweets and if it's not something she recognises, she won't eat them.  I knew before we went that she wouldn't eat most of them (and I was right!) but she had a total blast just finding all the treat stations, and gathering "candy."  She filled up her bucket, and half-filled one for me too, and chattered the ears off the cast members who were handing the treats out.  She chose a Wonder Woman costume 

Some of the other parks (I appear to have forgotten to take 'entrance' pics of Animal Kingdom!) 

We visited the Kennedy Space Center, a place I've wanted to visit all my life.  It was very cool, though Alyssa was only interested once in "Space stuff" when she could get inside the rocket simulator upstairs.  She did enjoy playing in the play park, and was very pleased to see a friendly squirrel ......!  It is definitely somewhere to visit if you happen to be in Orlando and are taking a break from all things Disney.

And you can't do a Walt Disney World story without mentioning the fireworks at the castle in Magic Kingdom!  You just can't!  I have literally never seen a firework display anything like that.  It actually ruins every firework display I shall ever see again in this country.  They tell a story from start to finish, and the music and narration which goes with it is genius.  Typically, I got so caught up in them that I didn't actually take any pictures (well, not any decent ones), though I did got a lot of fabulous videos.  And there you have it: our Florida / Walt Disney World holiday!  An incredible place for a 9 year old girl, and also for her adult mum.  It's amazing how much it brings your childhood memories back to life, and the minute detail in everything they do and have, just has to be seen to be believed.  I don't know if we'll ever make it back again, but I hope so.  It was well worth the money.

*I have glossed over the few medical issues we had, as I wanted to keep this post about the fun we both had there.  There was a bit of spontaneous adaptation needed a lot of the time due to the heat, the lack of shade, and just general issues that Alyssa had.  But nothing too major, and only stressful for me, not her.  She earned her Florida holiday, so I'm cool with that :-)  

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