And New Year has come and gone already ....

Wow, I can't believe how quickly the days are getting by me here. I always feel like I just updated this and I find it's been a week ... or 10 days, looking at the last update! Scary!

Alyssa's doing pretty well, considering. She has had a low-grade fever coming and going for weeks on end, which is hard to actually associate with anything because she isn't always ill when she has a "fever." I'm at the point where I rarely pay any attention for an illness point of view unless her temperature is at least 39C or above, because she so often has a 38C temperature but is fine in herself. Since the outside temperature dropped here, she's practically had a high temperature at some point of every day so it seems to be her reaction to the cold.

And - despite her extremely distressing reaction to cold sensation - she does not seem capable of telling when she is physically too cold ... so her little fingers and toes have been blistering due to what appears to be the colder temperatures. Her face is also scarlet very quickly once she's been outside too. Trying to wrap her up is very difficult because she overheats, then immediately starts tearing her skin off ... but if I don't try to wrap her up, her skin is drying out quickly and she's turning scarlet in no time. But - of course - she doesn't care in the slightest! Now if it was hot outside, she'd be telling me constantly that she didn't like it ....!

Thankfully; Alyssa's lovely dermatologist has been working in between the christmas and new year period, and e-mailed me back with a few suggestions of creams to try. Got one of them and have been slathering it on her after baths; just before she goes to bed, and her skin is already looking much better. Her face is not just as dry, and her arms are healing again. The new antihistamine is still making a difference but cannot compete with an "Alyssa with a temperature" just like any previous drug, but it does seem to help some. I think we just have to accept that an overheated Alyssa will scratch and tear until she draws blood, regardless of what medication she is on!

The special lycra suit was sent back for readjustment yesterday again. The girls were laughing when they tried to get it on her, and saw that it needed adjustments almost everywhere!! She's a little fatty! ;-D It's a shame because it's been away for longer than she's had it, but I'm so pleased that we're at this point, given how hard a struggle it's been to get her eating like she does now. To think that just a year ago, I still had to encourage her to try most foods she didn't know (what she ate was a very small selection of foods, all the time!) and she usually refused! And not too long before that, she had a nasogastric feeding tube up her nose and down her throat - feeding her when she refused to eat. I am a very happy mum that she's now gaining weight so well that her suit is having to be adjusted in almost every way! :-)

We also celebrated the first ever year since Alyssa's birth where we managed to avoid the hospital for the entire Christmas AND New Year period!! Things have definitely improved, I'm delighted to say!

Alyssa's nose is finally healing. It has scarred somewhat but it's not too noticeable unless you're looking for it, so I guess that's not too bad. And she'll grow, so it will shrink (assuming she doesn't find another reason to start on it again!).

Received the dvd of the 1st HSAN Annual Conference at the NYU Medical Center over New Year, and am really pleased by it - especially as I was unable to attend, due to it being held in August. It was just far too hot in New York at that time of year for her, and we would both have been miserable. There are many medical specialists lecturing at the conference and I learned a lot from it, and got answers to more questions ... as well as discovering what the plans for the next stage of research are.