Has it really been ....

that long since I posted?!? Wow! That's gone past in a blur!

Alyssa's suit has been sent back for readjustment; which is a bit unfortunate because it was so brilliant, but at the same time there's no point her having her posture corrected if it cuts the circulation off to her arms! So she has been re-measured and it will be posted back out to us once it's adapted. She is still holding herself better at times than she was before trying the suit though, so it's good hasn't been completely lost I'm glad to say.

She's been "ok" since I last posted. She's been fighting some sort of cold/virus for weeks now and has had a runny nose and low-grade fever on and off for the last couple of weeks, but she was pretty hot over the weekend and - as soon as she has any rise in temperature - she starts to tear at herself more again. So she's still attacking the back of her head and her neck, as well as STILL pulling the skin off her nose! *sigh* One of the girls at the family centre said she wondered if Alyssa is pulling the skin off her nose once it has scabbed over because it has perhaps tightened, so she is more aware of it. I hadn't considered that, but it is a definitely a possibility - she's certainly not attacking it because it's itchy ... it's always when you leave her for a few seconds, or she is "amusing herself" for any length of time, and she remembers about it. In the car, she can see it in the rear view mirror which is a bit unfortunate because - no matter how "good" she's been with it - she immediately remembers about it and starts picking at it.

I've managed to source the new antihistamine - recommended by Dr Axelrod in New York - and should be collecting it tomorrow, so it will be interesting to see if it makes any difference to Alyssa's itching. I'm always highly skeptical of drugs these days, because we've been through so many drug trials now and she still tears at herself. However; it is getting harder now because a lot of it is learned behaviour instead of just being because she's so itchy. She also uses it as a way to rebel against me, which every toddler does at some point - she just happens to tear her skin off as a sign of rebellion ... especially because she's just been told not to do it!

I'm seeing Alyssa's paediatrician tomorrow for a catch-up of all the information learned in/since New York (some of it - like the OT's report - was posted, once it was finished), and a general review of how Alyssa's doing. I had really wanted the paed to see Alyssa in her new suit, because she would have been absolutely amazed by the difference in her - but I think she'll still see a big difference. We last saw her just before leaving for New York, so it's not been that long - but there's a noticeable difference in her posture and her gait.

The paed will also notice a HUGE difference in Alyssa's speech! :-) She came on so well while we were in New York, but she's had a sudden speech spurt even since that, and is now like a little parrot! To the point where we have to be very careful about what is said in front of her, lol! ;-)

Something else I just wanted to point out from a Pain Insensitivity point of view is that her sensation sense in her legs seems to be increasing. I'm not sure if that means she is more aware of pain as such, or that it's just because her skin sensation is just more sensitivie in that area (like it always was) but she is reacting more to things "hurting" her legs and feet (her words) than she was previously. However; confusingly, she didn't bat an eyelid when she had huge needles inserted deeply into the muscles of her legs - but was still complaining that the pin prick test "hurt" ... so it doesn't appear that she cares about deep pain much. Just that she seems to be more aware of the sensation on her skin in these parts.

She is nothing if not a riddle! ;-)