Can't believe it's been 10 days since I posted already!!! Am running about like a headless chicken at the moment, with all the various things I have on the go at the moment and checking up on them all - as well as the "normal" stuff I have to get done each day with Alyssa!
Well, last week at the hospital we agreed that the Thalidomide was clearly helping the sweating and so therefore the itch as a result, plus being so sweaty clearly made her miserable and - as the anaesthetist couldn't think of anything else which would affect that so well ... without causing other problems or side effects. So the Thalidomide has been started again, and we'll look into other possibilities when I get back from the States. She's settling down again on it now, and sweating much less again so she's scratching less again. She has torn her chest open again unfortunately, but hopefully that will start to heal again now that she's back on it and not as sweaty/itchy.
Met Alyssa's actual dental consultant last week for the first time too (the one who replaced her previous consultant). He was really nice and clearly concerned about the amount of damage that she's caused to her inner cheek already. So he put more cement on the upper molar and has recommended that she have a crown fitted to that one tomorrow, and we can then monitor the situation. He's hoping that by doing this, she'll not only get to keep the tooth underneath but that it'll also be much more blunt and she should do less damage if she does bite herself. It's more rounded off than her actual teeth. The surgery Alyssa's having done will be in a couple of weeks, so that should give us an ideal amount of time to gauge the oral damage and - if nec - then the teeth will be removed at the same time.
I managed to raise enough money to book the flights to New York on Saturday, so that's the first step accomplished!! And think I almost have enough to book the budget hotel I've seen, which is pretty reasonable ... while still being in Manhattan! Then I just have the $2000 for the consult and testing being done, and the $1000 for the specialist Occupational Therapist that we're seeing ... but hopefully we'll manage in time! Still have just over 7 weeks to go, so fingers crossed!
Alyssa was measured for a special lycra bodysuit yesterday, which is aiming to correct her very poor posture and help stop her from crippling herself - which is essentially what she's doing at the moment. Because she's so hypermobile she doesn't hold herself like she should, and then because of the Pain Insensitivity and it not hurting, she doesn't correct herself. That should arrive in 3-4 weeks they told me, so will be interesting to see if it helps. Have to build up the time she's in it gradually, but will definitely be worth it in the end if it helps with her poor posture and lordosis.
Ok, think that's all for now. Will probably think of something else later and come back but it'll do for now! :-)
Welcome to Alyssa's blog ...
- Alyssa's Mum
- 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
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