And again ...

time has just rushed past unbelievably! I'm always surprised at how much time has passed between my blog updates these days, life is just constantly at warp-speed at the moment.

Alyssa is now fully recovered from the chest infection (yay!) but still having issues with controlling her emotions, and telling me fairly often how unhappy she is. She is not however, able to communicate yet exactly why she is unhappy because her language (and brain) are not "there" yet ... and a lot of the time she will automatically resort to the default "sore bum" which I believe is true some of the time, but not always. She just knows I will accept that as a reason for her not to be happy. I miss my happy baby girl! :-(

She still scratches and tears her skin off but does minimal damage due to the arm restraints worn overnight .... I really just don't want to have to resort to them during the day again, because we were doing so well at naptime until recently. However (sigh) if needs must .... then I shall again be forced to use them during naps and even in the car, because her toddler "tantrums" in the car involve her glaring at me in the rearview mirror ... while tearing her skin off! Needless to say, that is pretty dangerous - for both of us! Her, because she does such damage so quickly and me, because I am distracted from the traffic and road. I so far have only had to resort to the arm restraints on once occasion and I really don't want to resort to that ... but my priority has to be the safety of both of us. She has toys, games and a dvd player in the car - all of which work to distract her a lot of the time - but sometimes nothing is distracting enough. I guess when you're itchy, you're itchy ... and you'll get at that itch whatever the cost! Not feeling any pain on top of that, means there is no barrier to stop you so you'll just keep going until that itching feeling (and the resulting skin!) is gone!

Alyssa had the last physio session today with the physio she's been seeing for a year, because the physio is retiring. So we'll be getting someone new once a replacement is found, and once it's clear how much OT work Alyssa needs - and how intensively. She also had a speech therapy appointment today again, and the speech therapist still seems very impressed with her word sounds - much as I am - especially given the fact Alyssa has no teeth, low muscle tone facially (as well as everywhere else) and part of her tongue missing, and has requested one more session to base her assessment on ... but already thinks there is nothing we need to be doing at this point to get Alyssa's language further ahead than it already is. I couldn't agree more, because I think she's doing amazingly well, and comes on in leaps and bounds every few weeks. She may not always be the clearest child to understand because she doesn't always finish words - but according to the SaLT (Speech and Language Therapist), many children her age without her issues are not as clear as Alyssa! And she always finds a way to make her needs and wishes known, so it's not a problem at the moment.

Had the first session with just the new OT today too (the teamleader we were seeing is always being asked to be involved in many other areas, understandably so asked for this lovely girl to take over Alyssa's care). It was really good. I found her really easy to talk to - on a variety of subjects regarding Alyssa - and she's got a lot of experience with sensory problems and children with sensory needs, so she's able to give me practical insight on top of the OT work we're doing with Alyssa. Plus ... Alyssa loves her! :-D That in itself makes things much more easy, she's happy (allowing for our genetic stubbornness of course!) to do whatever the OT asks of her .... though sometimes perhaps in her own sweet time! ;-) Got a few ideas from the OT on how to help her deal with the emotional meltdowns too, so have a couple of things to try and see if they help her calm herself down.

The access worker was also here today to assess Alyssa for going to nursery soon. The nursery staff are (understandably) terrified of the thought of taking a child who does not feel pain ... and what that means. It's so new to everyone that it's a really daunting aspect to them all, they've never been in a situation like it before and we're all scared of what we don't know. But we discussed the various things that are likely to be a problem, and I reassured her on the things that AREN'T going to be a problem, so I think the access worker was happier about her going to nursery when she left. The nursery staff themselves will still need a bit of reassuring and adjustment, but I have also offered to stay with Alyssa for the first few occasions - until they are completely happy with her and what her needs are - if that will help. I already made it clear that she will not go to nursery unless she has an SA (Special Aide) for one to one supervision, and that was accepted with less fuss than I expected actually. But I have not fought to get her to this point relatively unscathed to have her wounded constantly at nursery - nor do they need a child who is always attacking herself and bleeding over everything in a class full of children!

It's been a hectic couple of weeks again, as they always seem to be and I have been rather exhausted at times ... but am hoping we're in for a calm period again over the next few days. Will (hopefully) write again soon.