The week from hell ...

Well I've not been on here much except to post about how New York went (because I knew those of you following this were desperate to know), but also because this week has just been absolutely awful. :-(

Alyssa fell when she went to her dad's house earlier this week and grazed her nose. A simple, ordinary, everyday "toddler" injury that every other toddler has had at some point (ok, excepting the point where her dad phoned me to say he was worried one of her hands/wrists was a bit swollen and could I come and check it - but it was fine!) ...! Of course - with Alyssa - there is no "normal" injury and she will destroy any wound she can see!

Because it is her nose, it should have healed no problem (and was really no big deal, a few scratches on her nose) BUT ... almost everyone we met automatically said to her "Oh, what happened to your nose?" ... which just reminded her that she had a "sore" nose. And in the world of Alyssa, that requires investigation! She has gradually over the last week managed to almost peel the end of her nose right off, and the wound has gone from being a few minor scratches to a hole the size of a 1p (10 cents to you US folks) already. Not to mention the blood factor!

We went to Callander and Crieff today, to take her to the Christmas shops they have - thinking she'd love all the lights and christmas-related toys and items they had there. And she did. But as soon as we weren't watching her completely and whole-heartedly, she was stripping the skin off her nose! At one point - in the middle of Callander High Street - I looked into her buggy and found her with blood pouring down her face, all over both hands and down onto her neck. As well as spread up her face onto her cheeks, like she'd just had her nose burst! People were staring at her, and at us (nothing new there I guess, when Alyssa has any wound) in complete horror and amazement ... because she was so unconcerned by it all. One woman asked us if she'd fallen, and then helpfully suggested a "spray that stops the bleeding and numbs it" ... which would be wonderful - except she doesn't need it numbed and SHE is the one who is making it bleed! A mere spray cannot compete with the deliberate mutilation of a child who just does not understand that this is injuring (and scarring !) her all the time. Hopefully; this particular injury will not scar like all her previous mutilations, but I am much more distraught about it because it is her face! :-(

I do not want to have to resort to using her arm restraints (padded arm immobilisers with velcro) unless I absolutely have to, because she gets very depressed and withdrawn with them on during the day. (She wears them every night when she goes to bed, to stop the "normal" tearing injuries she does daily and is perfectly happy with them on then - most likely because she's so used to them. She actually tells me that they have to go on ... and usually that they're not on tight enough, bless her!). But wearing them during the day and being prevented from being able to do anything is not fair, and she is obviously very upset if she has to have them on then. And I'll admit that there have been times when I've had no choice, because if I am driving and she is particularly itchy and cannot be trusted not to scratch and tear, then I have to put them on her. I have lost count of the number of times I've had to slam the brakes on in the car and actually get out of the drivers' seat and into the back, to physically restrain her and stop her from tearing herself. She is usually already covered in blood by this point, but she also knows that I cannot stop her when I am driving and uses this against me. What starts out as an itch which she needs to scratch, becomes a battle from an otherwise typical toddler - and she will use this as the thing to rebel against me with.

I plan to phone my local hospital tomorrow and ask for advice. Obviously, they are not any more experienced with HSAN or Pain Insensitivity than I am (very much less so!) but her paediatrician in particular is a very smart and practical woman, who usually has some suggestions or recommendations that I have not thought of. As is the Community Paediatric Nurse, who is very creative! Hopefully one of these two will have something my frustrated and exhausted brain cannot come up with as yet!

Obviously not the most worrying part of it all - but certainly the most annoying as far as timing goes - is that I have been corresponding with a magazine reporter, who is doing a story on Alyssa (or is trying to) ... and I was supposed to be having a picture of the two of us taken this weekend because I do not actually have any. So that hasn't happened this weekend, and I shall just have to hope that they understand. Sadly; Alyssa is famous for her very bad timing, and this IS life with Alyssa, which is exactly what they are trying to write about.

Here's hoping someone has some ideas this week. Keep everything crossed for us, I really don't want her face scarred! Her lip is already scarred as most of you know - from when she bit straight through it - but that's not really too noticeable, unless pointed out. I don't want her to dig into her nose until she ends up with a scar there too! :-(