Wow!

Can't believe how long it's been since I posted, it's pretty much passed in a blur!

Things have been up and down (as always) and it's always difficult to know exactly what to post about when it's been this amount of time *makes yet another note to self to get on here more often* ...!

Alyssa's doing relatively well. She currently has a particularly nasty bilateral conjunctivitis (both eyes have pus pouring out of them) which resulted in a "fun" conversation with the pharmacist, when asking for something to treat them with. Fun meaning looking at me like I was from another planet!!! Alyssa's hypersensitivity to cold not only extends to her eyes, but is magnified by what seems like one million percent (as discovered from a previous eye infection, and attempts to put eye drops from the fridge onto her eyes!), despite her not feeling "pain" in them. She would not care if she had an eyelash, grit or presumably anything sharp stuck in there ... but try to put anything cold on her eyes and she will literally scream as if she is being burned alive. Or stabbed in the eye with a fork! Multiply that by four times a day, and there's just no way we can put cold eye drops in there. It's like torturing your own child, with her going rigid and on the verge of clinical shock - just from eye drops! It's not a pretty sight, and not one I'm in a hurry to repeat unless there is no possible alternative.

After explaining all that(to a very raised eyebrowed pharmacist) he went off to find a suitable ointment, which did not also need to be stored in the fridge. I knew from my former life as a veterinary nurse that there were indeed some, so was happy when he came back with some. Almost immediately after putting them in the first day, she was much improved and has been really improved since ... until I forgot to apply it this morning and lunchtime. By the time she got up from her nap so we could go out for Mothers Day lunch/dinner, the pus was already back with a vengeance and pouring out of her eyes again! :-( That doesn't bode well, considering this is day 4 of what is meant to be a 5 day course! Looks like we could be phoning the doctor - or even the eye specialist - tomorrow.

What else has happened since I last posted?!? Saw her paediatrician, who did all of Alyssa's "developmental milestones" because we haven't done them for a long time (there's always so much else going on, although we obviously note anything of significance at the time). Alyssa scored not too badly on most things. She's slightly delayed in most things and scoring ahead in her "hearing and language" or understanding - which is no surprise to those of us who know her! She's a cheeky little minx, who seems to have been here before! The only area she scored significantly delayed in (and one which was no real surprise) was her motor skills, or her physical development. She is scoring at about the equivalent of an 18 month old when it comes to physical tasks - running, jumping, skipping, climbing, lifting her legs etc - and although that's perhaps shocking for some of you to hear (especially those of you who have met her and have seen pictures of her) I would actually say that's pretty accurate. She knows herself what her physical limitations are, and is starting to "self-restrict" in group activities that involve any form of physical input.

Her brain is so busy trying to cope with blocking her attention to the gut pain, trying to remember to maintain a normal posture, ignore the itching and deal with her many balance/proprioception issues as well as whatever task is being asked of her, that she struggles to keep her body positioning in a manner that allows her to keep her hands free to actually do the things she wants to - even if that is just painting, drawing or doing puzzles. But it mainly affects her playing on regular playground equipment, ride-ons and other "toddler" toys. However, her OT and I are working on that and hopefully it won't be too long before she is starting to catch up.

The OT is brilliant!! I love her, and so does Alyssa! (I am told that the OT is her "best friend in the whole wide world" every week, when we're on our way there and even sometimes at weekends ... when she's hoping we're going to see the OT! And that's really nice, because she works really hard but still thinks it's fun and wants to keep going back every week.

We also attempted to take her to physiotherapy swimming again! With the wetsuit and water shoes that was recommended by the specialist we saw in New York (to prevent her having skin having to come into direct contact with both the water, and also every other cold surface that automatically exists in a pool environment). It went slightly better than I expected it to, although it was still really stressful - for me, but more so for her. She was lulled into a false sense of security by having the wetsuit on, because she could actually sit/lean/touch the surfaces in the changing areas which she couldn't do last time, in just a swimsuit. I couldn't put her down anywhere because everywhere was "cold" and that to Alyssa is just unbearable. This time round, she was perfectly happy (and quite excited) by the time we got to the poolside. Last time we were there, the pool was pretty warm so it hadn't occurred to me that it wouldn't be this time. Unfortunately, it was quite cold and - despite the wetsuit - she got a complete and utter shock when she impacted the water, and started screaming! She asked to get out, begged to get out, demanded to get out, pleaded to get out .... the entire time we were in the pool (approx 40 mins) but did also manage to kick her legs a bit "like she was swimming" :-) a couple of times, and did some of the exercises the physio asked her to, but she was not happy the entire time.

I persevered and distracted her as much as was possible, and knew she's really had enough when she went limp and looked like she was going to sleep there and then! However, the stress was clearly too much for her - as well as the work done in the pool itself - because she was absolutely exhausted when we left. And even by the weekend, she was still suffering! So we need to look at a: a warmer pool, b: a better timeframe for the session, because she's usually asleep at that time of day anyway (and NEEDS that sleep) and c: a physio class perhaps on a one-to-one basis, where only her needs are being focussed on. Swimming would be the ideal way for her to exercise, if we can just get past the extreme sensory ones. The OT and physio are working on those options though, I just can't bring myself to make her go through that week after week.

We also have BRILLIANT news though! I've finally got the house I've been waiting to hear about for months now. It's a 3 bedroomed bungalow where I'm from so we'll be in the catchment for her nursery once she finally goes, it's completely flat so I won't need to be lifting her up and down stairs once we move, and I'll finally have the extra room I need, to create her special "padded" sensory room!!! I'm so excited, and packing already!

It's well after midnight here already, so am off to bed (she's also shouting me!) but will aim to post again soon and update on the swimming/house moving issues!

xx