Heh! Haven't posted for a week, then two lots in two days! Me and my shocking memory! Forgot to tell you about the OT (Occupational Therapist) visit on Thursday.
She was really nice, more prepared for the mystery that is Alyssa than I expected although did say there were things she needed to get her head around. She's looking into getting a special seat for Alyssa to help keep her more upright and help with her posture, but says that - short of actually strapping her into something - she'll still need constantly reminded to sit up straight. Because of her hypermobility AND the pain insensivity, she can sit in the most cringeworthy of positions ... which is fine for now, but is going to end up causing longterm damage because her joints shouldn't be in the positions she can quite easily put them into. She is always hunched over, and needs reminded a zillion times a day to sit up properly (which she can!) but it doesn't last for very long and she forgets again. Hopefully, the new seating will at least be a small reminder for her.
I also asked the OT for practical advice regarding Alyssa overnight when unsupervised and the fact that I should really not be using the arm immobilisers, but am left with little choice if I expect to get any sleep at all! She suggested something called a Sleep System, originally designed for children with severe physical problems, and is basically a piece of board with specially-shaped foam attached which the child sleeps on/in. The foam is shaped to hold the child in place, and the child is strapped in/onto it. Perhaps I don't fully understand it yet (haven't seen any examples and am coming up with nothing when I try to search online) but it still sounds like physical restraint to me!?! But will know more when she is able to get back to me. Either way, Alyssa is being physically restrained to some extent and - whilst not ideal - it sounds like the Sleep System would help with both preventing her tearing at herself AND her overnight posture, which really is awful. The arm immobilisers are only stopping her tearing at herself at the moment.
I had intended to ask the OT for practical advice on Alyssa's heat/cold intolerance issues - particularly with bathing, but ended up just going over it briefly. The reason for this is because I had a brain wave last week! :-) Was pondering how Alyssa could tell me what temperature of bath was acceptable, considering she screams if it's too cold ... and now screams if it's too hot (it's never "just right" or even warm or cool). Decided someone had to make a digital bath thermometer instead of the useless baby ones where you can't actually tell what temperature the bath really is, found and bought one! It arrived on Tuesday and - just as I was about to use it - I remembered that she is also a factor too. If she is warmer on a particular day, then she reacts more to the coolness of the water (hence why we've rarely ever got the water temp right!) and realised that I could take her temperature first, then match it to the bath water. :-)
It worked perfectly!!! Yay!! She cried as soon as she was about to be lowered into the bath (as usual, covering her eyes and bracing herself for entering the water), then she was in it and slowly taking her hands off her eyes and looking at me in wonder. She didn't complain it was too hot or too cold, and even wanted to play with some of her toys!!! This is a major breakthrough for us. She'd gotten to the point that even the little foam letter she played with for a short while were reasons to freak out about ... because they would "float" towards her and touch her legs or arms. She'd then spend the entire bath trying frantically to push them away from her because they were always "cold." Poor girl. She's now really enjoying the bath for the first time in 2 1/2 years instead of just tolerating it! And so far, it's working. I just adjust the temperature slightly if her temp is up or down.
After seeing the difference this small thing made to her life, I finally gave in and purchased a Wipes Warmer. Had been trying not to do that as was really hoping she would desensitise to these types of reactions, but the more she seems to feel cold as painful, the more guilty I felt about not doing what I could to minimise it. She loves it!!! She wants to take them out constantly and use them, and keeps saying "nice ... bum" (they're nice on her bum!) ;-) Bless! The only problem I have now is that I don't have one at each changing station ... or a portable one. But I have looked into getting a portable one, and the company have sent me a link to a rechargeable one which can be charged in the car ... so that will be the next purchase no doubt! Should have just bought one a long time ago. Oh well, have one now!
She's also had the first session of TSE and tolerated it pretty well. She doesn't feel the actual TSE, but the wires which attach to the pads on her are just a little bit too tempting for a 2 year old and had to try to distract her for the 30 mins it was on. She did really well, and only had to be reminded a couple of times that we had to wait for the counter to reach 000 before she could get them "offffffff" like she kept saying! All in all, she was a little star!
Welcome to Alyssa's blog ...
- Alyssa's Mum
- My name is Moira, and I hope to share with you what my daughter's life has been like so far ... so you can all truly understand and appreciate the gift of pain, which we take very much for granted! Alyssa does not feel "peripheral" pain, which means she does not feel pain anywhere other than internally. This has led to many unintentional injuries and self-mutilation. My aim is to not only find others like Alyssa, and help those who may be going through what we are, as well as raising awareness about this condition, and how feeling pain is actually a GOOD thing! I am thankfully now part of a support group run on FB which is an amazing group of people, who all have varying types of experience with pain insensitivity. I can be contacted directly via understandingalyssa@hotmail.co.uk
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