It's been a pretty good week this week!

I hear you all gasping in shock at today's title! ;-)

But it has been a pretty spectacular week - not because Alyssa has mutilated herself any less than every other week (hardly! She's still attacking that poor nose of hers, as well as the usual neck wounds!) but because ..... I collected her "special lycra bodysuit" on Tuesday, which was specially measured by the orthotics department then created for her. It's AWESOME! :-D

The idea behind it is that - because it's made of lycra and is supertight - it provides deep pressure, which gives her the sensory feedback she needs to learn where her body is, in relation to her surroundings but also in relation to herself. It also has specifically-placed padded areas (individual to each particular child and their particular problem) to provide extra support in the areas required. In Alyssa's case; the most important things are to pull her shoulders forward and pull her stomach back - to correct her pretty severe lumbar lordosis (lower spinal curve) - and to give support to her very low toned muscles, so strengthening her arms and legs at the same time.

The difference in her as soon as it was on was just unbelievable!!! She stood straighter, looked taller and was just generally sturdier. She looked more confident too and although her gait was more noticeable because you're eyes are drawn to her feet more (instead of her floppyness), the orthotist said she felt immediately that Alyssa's stance was better, her legs weren't so wide apart and she was placing her feet better. We were to build up the amount of time spent in the suit each day but even after the first day, the difference when she wasn't wearing it was scarily mindblowing! She's much stronger and is holding herself up better, in both a sitting and standing position, she's easier to carry because she's more sturdy - like a "normal" toddler - and she's loving showing off the suit! ;-)

The added bonus is that because the suit is so tight, it's also reducing her itching sensation and she's not really scratching herself much when it's on. I was asked by the OT on Friday how long that lasted once it was off, and sadly I haven't noticed that having the same impact for any length of time once the suit is off but I'm also so used to her scratching that it's not immediately noticeable if she's not scratching, because I'm pretty immune to it. Plus, she's still tearing at her neck and she's still attacking her nose so she's not necessarily itchy but she's learned to do it (or has them pointed out, or is curious because of the blood) that it's hard to tell for a little while. That will be monitored though, as it's pretty awesome that she doesn't scratch at herself so much - from itching - when the suit is on and it would be a shame to think that it is only going to help when she's wearing it. She can't wear a suit forever, all the time! BUT if it works on sensory feedback, then it may also help with the sensory aspects she needs for the itching to lesson as it is clear that it is her sensations and how her brain perceives them, that are causing the problems. But time will tell how it affects the itching!

The only downside to the suit is that it is a bit tight at the sleeves, and her arms are definitely being affected by restricted bloodflow. It has capped sleeves but they finish just above her elbow joint, so they are tightest just at her elbow. Her arms turned red; then purple almost as soon as it was put on her at the fitting and - because I was concerned about it then and pointed it out (and also that as she didn't feel pain, she also wouldn't know if it was too tight) - I was advised that it needs to be tight so it doesn't ride up and that although one of the physiotherapists felt it may be tight, the other thought it would be ok. She suggested I try and stretch it when Alyssa wasn't wearing it and see how it went, which I did and it did get slightly better as the days wore on but I still wasn't happy with it. Her arms continued to get darker and darker the longer she wore it, and in comparison to her legs (which are her normal colour) were mottled and blotchy. They are always cold and clammy, so I cannot use that as a valid form of testing and asked various medical professionals for their opinion and most agreed that they felt it was a bit tight. (If she leans on a table for example, her lower arms start swelling up and turning purple!) When I took it off her yesterday however (the first day she wore it for the "full day" which was actually 8 hours) she had deep red welts in both arms, so it is definitely too tight. So she has not had it on as long and I will need to have it sent back for readjustment.

Apart from the sleeves aspect .... I LOVE THIS SUIT! She's like a little superhero with it on! The things she can do (NORMAL things for a 2 year old) are just amazing, and so nice to see - as well as the fact that she is noticeably more comforted and settled with it on, compared to being without it - and I am so pleased that she finally has something which has made a definite and immediate improvement!

PS: The Website updating did not go very well :-( It may take a bit longer than I thought to master this whole website thing.

Night all xx