It's been a long day ... again!

Well, am having a bit of a pity party tonight - although I don't really have the right to because it's poor Alyssa who's having all the problems. She's had a cold for a couple of days, and been "wellllllllllll" (while shaking her head .... which actually means she's not well!) but today she's really got a chesty cough, and she had a few coughing fits today where she's been unable to breathe at all ... which led to more coughing ... and less air, so she started panicking ... and just got in constant vicious circles. Poor baby girl.

To top that off, her tummy has been particularly sore today for some reason and she was miserable due to her guts cramping and also because she's got the cold. And now - after monitoring for the last 24 - 48 hours - I've just realised that she's got an abscess on her back. *sigh* I have actually been watching that particular area for the last couple of weeks since she had an incident with the TSE machine. She pulled one of the sticky pads (electrodes) off - which in itself is nothing unusual - but on this particular occasion, she managed to fold it over on itself so it was stuck to itself. I didn't think anything of this, and merely peeled it apart and replaced it. But when I removed it after the TSE session was finished, it appeared to have burnt her - and caused a blister - and the top layer of skin peeled off. Now she hasn't really gone for it like she does with most wounds, because she can't see it (and therefore, presumably doesn't even know it's there) but it's now really fiery and full of pus. :-( So looks like we'll be seeing the doctor tomorrow.

On the upside: we saw the dentist again on Thursday and he seemed quite pleased with the ulcer, and that it appears to be healing now the upper molar is crowned. So he crowned the lower one on the same side, and we're going to do the other two in a few weeks. He says if crowning them even saves them for a little while then it will prevent her adult teeth coming down too soon (and making it more likely she'd need them removed as well, to stop her biting herself!) ... so we're fairly optimistic. Alyssa got pretty upset this week getting the crown put on, and was really distressed at one point. Which was a shame, because she'd been so happy the week before. But I believe that the cement was a bit cold, and that to her is unbearable - so she panicked at having something so cold in her mouth. Again, yet another catch 22 situation. :-(

Still no date for the surgery yet *sigh* so hopefully I'll finally get word in about it this week. It's very frustrating that this may be the answer we've been waiting on to get rid of her gut pain when we're still waiting for it to happen. (and having a child who "feels no pain" ... but is ALWAYS in some degree of it, is not only confusing to others who want it explained, it seems downright cruel!)

Her sense of "heat and cold" seems to be a bit less obvious to her now. She's constantly freaking out about the temperatures of things (bath water, wipes, etc) and clearly can't tolerate them - but doesn't seem able to tell if it's because they're too hot, or too cold that she's so uncomfortable. And bathtime is now back to the hell it was before the digital thermometer, despite trying to match it to her temperature as much as possible ... she's just so miserable until she's finally adjusts to the temperature and it's adjusted to her, and by that point it's time to get out. She's holding on again constantly, and crying that it's either too hot or too cold! :-(

We also should really be at the stage of toilet training by now and that just brings up so many new problems, that I think it's where my pity party is coming in. I can't quite comprehend how I'm going to get round her many issues, to achieve it yet. My brain is not allowing me to process the practicalities of it all. Assuming the surgery does fix her gut pain then I could at least start attempting it, but it wouldn't be fair to put her through that at the moment - it can be at least 3-4 hours of "needing to go" before she's actually able to just now, and that would just frustrate her and give her negative reinforcement. She doesn't need any more of that. But having pain insensitivity also means that there's a chance she won't feel "the need to urinate" either, as many children don't and have to get a toilet schedule, being reminded every few hours that they should go to the toilet. I am fairly sure that Alyssa can feel the urination urge and she DEFINITELY knows when she needs a bowel movement, but again that may change completely after the surgery. It may remove the pressure build-up so much that it takes away the pain she does feel, but then make it so she doesn't feel it any more!

However; I also have another perplexing problem: Alyssa's hypersensitivity to cold sensation means she physically will not be able to even sit on a toilet seat! I've looked at getting child ones that fit inside the toilet, but they're still made of the same stuff and I've already tested out the theory of her sitting on it without tights on - but just on the top, because she does sit happily on there if we're in the bathroom (brushing her "teeth" lol) when she has clothes on. The result of the experiment was pretty much the reaction I'd predicted - with her screaming her head off that it was "cold" and begging me to get her off it! :-( I'm trying not to get too disheartened about stuff like this - it may not become an issue for a very long time if the surgery doesn't help with the gut pain anyway - and I still have New York and hopefully someone else who's perhaps been through this as well. Ok, definitely rambled on long enough ... it's time for bed! Night all x x x