This life of mine is just getting crazier and crazier ...

Well! Can't believe how long it's been since I last posted!! Just checked the date and it was the 22nd October!

Sadly; the "building part of the work" that was going to be done was NOT done (or even started!) by the 25th October ... as it was decided that everything would take place at once, and the special air con / heating system which was to be installed had not come in yet. This was to basically allow me to regulate the temperature inside the entire house, as well as the sensory room - where I originally asked for it. It eventually arrived towards the end of October and very nice contractors came out and installed it the first week of November ... where it worked for a week!!!!! :-O I originially thought I just hadn't figured it out properly to start with, until I felt cold air blowing on me (when it should have been hot, as it's November!) and decided I should phone them the next morning. When I got up the next morning, there was ICE on one of the units! Definitely not what should be expected when it is on HEATING! The guys were as lovely as before and came out, and wasted almost an entire day trying to figure out what was wrong with what turned out to be one of the motor units outside, which powers the internal wall-mounted units. After much discussion from the company's technical "helpline" (who also had never seen the error code being displayed!), it was decided that it could not be fixed and we'd need to wait for an entirely new motor unit to be delivered!

Fortunately for us; the contractors had had the presence of mind when installing the system to put it on a split-system so that if one system broke down, we'd still have the other system. So our bedroom units were still working, even when the hall, living room and sensory room areas were not. And good job the existing heating system hadn't been removed, as we suddenly found ourselves in horrendous weather for this time of year which we haven't had in about 17 years ! so we needed the other system on almost all the time to keep the house heated! In the midst of all this, various contractors came out and changed the Sensory Room door to a "stable" door which opens outwards, moved the light switch to the outside of the room and removed the existing window sill. After much discussion (and phoning to Ochil View!) the joiners came back again and put a new window sill in and filled in the gaps which had been left, installed the hooks we need in the ceiling so Alyssa can swing to improve her balance/vestibulary problems, and so we can hang things from them for her to reach and grab etc, and improve various sensory issues.

The OT happened to come out at the same time as the joiners so we all at least were able to discuss what was needed as there was some confusion on everyone's part, about what the end result was to be from each of them. The main jobs now seem to be complete but they were not finished when the initial inspection was done, so we are now awaiting another inspection so that Ochil View are happy with the work done ... but they need the OT now to sign off that she is happy that the newly-installed air con / heating system, because the Ochil View inspector is concerned that the motor units outside are now a hazard externally to Alyssa, if she is playing in the garden etc! Something I never really thought about because she is never allowed outside to play unsupervised - for that very reason - but obviously; despite my assurances that I would not hold them liable for her injuring herself on it, they need it in writing by the OT that she agrees with me. He feels that the contactors would have put it where it was easiest for THEM, but not necessarily where was best for Alyssa ... and it was something the OT and I hadn't even considered. I can fully understand Ochil View's position, but it just seems like nothing is ever straightforward!

During all of this, the sensory room would have been very appreciated as Alyssa's new "trick" is to do "falls" ... which basically means that she is throwing herself at the floor at every opportunity! The first few times she gave me heart failure, though I have to try and not react as doing so encourages her to do it more! She is after all; a toddler, who does not understand that she is potentially injuring herself when she hits the ground with full force! And - having spoken to the OT (and her witnessing said trick!) - it's clear that Alyssa is actually doing it because she is getting sensory feedback from it. She feels "something" when she impacts the ground in such a way, and this is equivalent to the punching herself in the stomach/ribs etc or rocking her feet up onto her chest when she's lying down (and not throwing herself about!). I learn something new every day with this child!

Fortunately; I have managed to explain to Alyssa that she can not "fall" like that except for where there is padding and (thankfully for the nhs!) she has her huge padded bed, so she is "practicing her falls" in her padded bed for the time being, and understands that she will also be allowed to do them in her sensory room .... once it is finished!!! But that she is not allowed to hit herself off the walls, ground etc etc unless she is in her bed, or the sensory room ONCE FINISHED!!! *sigh*

Also in the last six or seven weeks (since I last posted) I've become aware of Alyssa's "intolerance to cold" in a new way. Sadly; despite her complete aversion to hot weather / heat of any kind, she is completely unaware of being too cold, even though anything cold actually coming into contact with her causes severe discomfort! The newly-installed heating system could not have come at a better time and although I really wanted it in the summer for the air conditioning element, it's proved to be just as essential now that it's so cold here. Alyssa will not tolerate blankets, sheets or even a towel (I got to desperate measures!) on top of her when she is in bed, so the only things that keep her warm are whatever she has ON. And those things have to be specifically chosen so that she cannot TAKE THEM OFF! Because she will, then freeze! She has been turning blue regularly lately, and is completely unconcerned about how cold she is. :-(

And now it's clear that her circulatory system is also included in this "disorder" she has which stops her feeling pain, as - as well as her turning blue when she's too cold - she is now also turning bright red, swelling up and burning whenever she's out in the cold, particularly in her hands ... but also her knees, face etc. I've chatted briefly with her paediatrician and she thinks it's likely that Alyssa has some form of Raynauds' / Erythromelalgia which basically means that the bloodflow is being restricted to her fingers in cold temperatures, or it's doing the opposite and rushing to them. Thankfully (for once!) she cannot feel this, because it both are said to be extremely painful! It's a bit of a bitter silver lining however, as these disorders in children are exceptionally rare and are "usually secondary to peripheral nerve damage" ... so just something else that she gets along with her rubbish nerves! :-( We see her paediatrician in a few weeks and she will take bloods from Alyssa, to test for various things before referring Alyssa back up to the rheumatology department at our regular paediatric hospital. I'm just having to be exceptionally careful at the moment about making sure she always has gloves on when outside - even for a matter of minutes - and using loads of thick moisturiser on her hands/arms/knees and face to battle the skin-drying which is going on as a result. It just never seems to rain but it pours sometimes!

The orthopaedic appointment which was to assess Alyssa spinal abnormalities sadly also had to be cancelled due to our recent horrendous weather, and the traffic chaos which ensued. I was gutted as we'd waited almost 4 months for the appointment but after hearing about the poor people who got stuck in their cars/vans etc on the motorway I'd have needed to use, for up to 25 hours ! I decided not to risk taking Alyssa. The thought of her being stuck in the car, trying to keep her warm (and not have her overheating, or her fingers etc turning blue!) was just too much to cope with, and we've had to reschedule it until the 5th Jan. But better to wait another month than risk being stuck in those awful conditions.

On the up side; thanks to everyone who helped us reach/beat our Sensory Room target, I was able to order Alyssa a much-needed specially supporting car seat and a duplicate supporting chair like she has at nursery. I was originally planning to keep it for the next New York trip, but it always becomes a priority-based issue with Alyssa and I was becoming more and more concerned about the fact she was outgrowing the "regular" car seat and should really be moving on to a normal booster seat. That would have been absolutely no use to Alyssa, because of her severely muscle tone, she would just have ended up half-way across the seat. And not safe at all! Likewise; at home, she has such difficulties sitting up unaided that she is now mostly not even attempting to do so and - if made to - she will just opt to lie down on the floor instead! But the "rocking and punching" automatically starts up. If I force her to sit up, she will sit with her head flopped on her chest because it's so much work for her to concentrate and hold it up! So these seemed far more important! Her nursery chair has already proved that she immediately holds her head up as soon as she sits in it, and the punching stops because it is designed so that it's fairly tight-fitting on her chest ... giving her the same sensory feedback she gets from hitting herself. Win/win! The only downside is that she's overheating a bit in it, so we've asked for "cooling" gel cushions to be installed in the duplicate chair being made, then we'll swap them over so the new one is at nursery ... as I can regulate the temperature easier at home.

The "carrot" car seat arrived a couple of days ago and we tried it out for the first time today. I have to say ... it's BRILLIANT!!!! It was not cheap. Not by any means. But one journey with her in it made me wish I got it a long time ago! She sits up so well and the chest pad stops her from flopping herself straight over on to her legs like she did with every other car seat we've tried her in. She can still flop her head down onto her chest unfortunately (which means she will when she's tired / sleeping) although I *can* wedge it into a reclining position if I want to, but she's still in a MUCH better position in it even without the wedge than in previous car seats. It's also got a longer leg part so her legs and bottom are positioned to encourage her pelvis to sit in the correct position. It's fabulous! :-D

We're now counting down until "santa" comes, and Alyssa's so excited about it all. This is the first year she's really been aware of it all (and hopefully we'll get a hospital-free christmas/new year period) so she's basically just stopping and screaming every time she sees a Santa picture/card! It's hilarious, but also nice to see! We've been through so much, her and I ... it's just brilliant to see her doing what most other kids her age do at this time of year. It makes me so happy to see her little face light up, that's what Christmas is all about in my opinion! Watched her Nativity play this morning with her nursery class (recorded it, obviously!) and it was just brilliant. She wasn't well enough to do much (other issues I haven't even posted about here today) and wouldn't get dressed up, but her special aide gave her some tinsel and she wore that on her hair to start with like the other children, then ended up with it round her neck ...! Until she realised she could scratch with it of course!!! So poor "nana" and "gran" spent a deal of the play quietly trying to get her to stop scratching with it ... which she pretty much ignored! She's just too smart for her own good sometimes!

Wow! See what happens when I don't get a chance to post for this amount of time. Must make a mental note to update more often (I see a pattern here ... and am pretty sure I've said this once or twice in the last few posts!). Perhaps it should be my New Years' Resolution ...! Thanks to everyone who reads our updates, and thinks of my special girl. And a Merry Christmas to you all xx