Alyssa's birthday was great! :-)

Alyssa had a blast at her birthday party, I'm delighted to say! She was absolutely exhausted by the end of it but she did really well, and the lycra suit gave her the extra support she needed and stopped her getting really tired too early.

I had to do a lot of research before I could book the party because she loves the soft play centres but we have to be very careful with her, due to the Pain Insensitivity. If a place is really busy then - because of her added low muscle tone and excessive flexibility - other kids knock her flying really easily, and the potential for injury in Alyssa is very high. The children do not mean her any harm, they are just playing as children should - but she is also unable to withstand any form of physical activity on her own either, and needs help from either an adult or one of her big cousins. The problems we faced with our local soft play centres were that either:

a: adults were not allowed to accompany children into the soft play areas, for fear of adults being too heavy and damaging the equipment (which is to some extent reasonable, but no use to us - or the parents of any other disabled child, who wants to play with the other children but needs more help than most)

b: that the soft play areas were fairly small or confined spaces so that adults struggled to get through them with her, or that if it was busy then the other children playing would injure her unintentionally (she can injure herself without much help, we don't need boisterous children injuring her as well!)

and c: that it would be too hot for her, because she heats up very quickly and then starts tearing at herself

I finally found a place not too far from us called "The Buzz" - which is enormous (our normal local soft play centre which I use when quiet would easily fit in it 4 times over!) so although I was freezing, it was perfectly regulated for Alyssa and the other children running about and playing. It had two separate soft play areas - one for under 5s and one for over 5s ... BUT it also had a very strict policy that encouraged the "more adventurous" under 5s to play in the over 5s section, but also stressed that they MUST be accompanied by an adult at all times! That was absolutely ideal for us, because it is exactly what we were looking for. There were no restrictions on adults being present in any part of the soft play area and we were all (including her 6'4 dad) able to go in and out of the play area with her. She had a ball.

They also had a "pay as you use" section with little go-karts that adults could also go in with the children, so daddy and her cousins took her in there a few times (we won't comment on her driving skills .... especially considering she spent almost all of the times looking up at us on the balcony watching her, and shouting and waving to each and every one of us ... so her eyes were most definitely not on the road!) ;-)

She had a Tinkerbell birthday cake and even attempted some of it, though was not impressed by the icing but had fun blowing out the candles. All in all, it was a good day - which she fully deserved.

Then onto the usual stuff: on Monday I had suspected she was a bit itchier again and a bit sweaty around the head area but she had also been back to her daycare (where it is hot when the sun is out so I wasn't completely sure); but by the morning of her birthday it was very obvious that not only was she scratching constantly, but that she was also sweating badly. By tuesday lunchtime she had visible sweat on her face and she was getting very hot, so I had no choice but to accept that the Thalidomide withdrawal experiment was failing. However; what was positive about the whole thing was how long she'd managed to last before starting to show these symptoms, so I figured that - at the very least - we'd manage to get away with a lower dosage of it (thus also reducing the risks of longterm Thalidomide to her system). In order to prevent things snowballing out of control like they normally do and me then having to play catch-up, I immediately started her back on the full dosage again until she settled down again (which was also very quickly!) and have now got her on a lower dosage, which seems to be enough. She is still passing a fair amount of urine overnight - and still was when off the Thalidomide completely - so I shall have to look into that when I next see her paediatrician.

She's still having lots of abdominal pain and has been really up and down for the last couple of months. I originally thought she just kept picking up one bug after another, but she is not setttling down so I've decided it's time to go back to keeping a food diary like we had to when she was really young. Am hoping that we'll see a pattern of what she's eating that's causing her worst days .... I can only hope it helps.

Off to go pick her up again now. After being up almost all night last night with her sore tummy and pooping issues, she was really bright this morning ... so will hope that the same has been true while she's been at the centre.