Welcome to Alyssa's blog ...

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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" and 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. After having the tip of her tongue repaired, she 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 for at least a couple of days. We'll never know how she broke it. Any time she says "my --- is moving, all by itself," we get x-rays done!

* She had to have all of her baby teeth removed, as and when they came in, due to all the biting injuries.
She is still dealing with the after-effects of that, as a teen.

* 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 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!

* Had corrective surgery performed on both hips. Unfortunate complications ensued, which eventually caused the entire removal of her Right hip, and part of her femur.

Thursday, 8 October 2009

Wow, it's been a week again already!!!

Discovered when getting to the hospital last week that the anaesthetist still didn't have a surgery date for me, but he phoned me the next day to say they'd managed to organise it for the 15th (a week today) and that he'd check with the dentists to make sure they could all be there together. Had to double check with the dentists yesterday, because Alyssa was due to be there today again having another crown fitted - which I really wanted done under the GA seeing as she was having a GA anyway, due to how distressed she became last time - and thankfully, they are able to do everything at the same time. So got a little hospital reprieve today! :-)

Unfortunately, she's had a really difficult night and was complaining for hours last night about her sore tummy. It was really difficult for her to get to sleep, and she still hadn't managed to pass anything by this morning - despite straining for hours at times. Poor girl! She has now managed to have a small bowel movement, but not nearly enough and is still in pain. :-(

Her mouth is slowly healing, and she has not been allowed to drink from bottle since I discovered that she was damaging her mouth from them. There is still a fairly large ulcerated area where she tore it open, but it is much better than it was last week! The dental team will be able to get a good look at it (and the rest of her mouth) when she is asleep next week for the anal stretch surgery - which we also hope will finally put an end to her abdominal pain.

Fundraising News:

We have now more or less met our target for New York!!! Thank you to everyone who has helped us get to our target in such a short period of time! :-)

A very dear friend recently held a "bring and buy" sale, which raised over £700 ... and we held a Pub Quiz on Monday evening, which raised just under £700 - absolutely mindblowing, and we were all overwhelmed by the support and generosity shown at both events. Prudential raised £2500 (as well as individual employees donating on their own behalf!) for us, which was just a staggering amount of money, and I have just been told that Stirling High School have raised £950 for us today! They were meant to be raising money for their own purposes, then decided they would give half the proceeds to Alyssa's fund. By all accounts, they have since changed their minds ... and donated it ALL to Alyssa! There are no words to say what all of this means to me! And what it will mean to Alyssa, when she is old enough to understand how many people went out of their way to help us! :-)

So; the flights are booked, the hotel is finally booked (although not actually paid for as yet - the card has been pre-authorised but not actually charged) and the fees are covered by the amount Prudential raised. And I am no longer panicking about how much money I need to raise before we leave on the 24th! If I discover that I need more while there, it will just go on the credit card and I'll worry about it when I get home. Likewise; if I discover that we end up with more than we needed, then it will go in a separate bank account for Alyssa - in case we need to go back - or it will be donated to Yorkhill Childrens' Foundation, if we find out there will be no need for us to go back in future.

Thank you once again to everyone who has helped us achieve our goal of getting to New York to see Dr Axelrod. Now to hoping she can help Alyssa with her many issues ...!

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