Progress...

Hiya,

Just thought I'd touch base and let you know how things are. Still no more news regarding test results, we'll let you know as soon as we know anything.

The last couple of weeks have been hectic but fairly positive. We have been busy with appointments with various agencies. Social services have responded to our complaint and apologised for their mistakes and fully accepted that Patrick does meet their criteria so that's good. We're just waiting to be allocated a social worker who can start planning what help we can receive.
We had a visit from one of Patrick's Occupational Therapist's who has fitted him out for his very own special seating system. It will replace the hi-lo chair that he has been using and it's very smart.

Patrick has had a great week in terms of his development. He has been really alert over the past few days and is more smiley than usual. Usually it's really difficult to get a smile from him and it takes a lot of hands on stimulation like tickling to get a reaction but for the last day or so he's been smiling at everything. I only have to look at him and he gives me one of his gorgeous cheeky grins and he's also started smiling at certain toys which is brilliant. He's making different sounds too and has managed a 'Ma' sound which is great. It also seems he is showing signs of trying to communicate, in particular when he's lost his dummy, he'll 'click' his tongue to show he wants it which is just brilliant.
Patrick actually managed to stay awake for a whole Portage session last week which was an achievement in itself! He's not too keen on anything like that, he doesn't really like other people trying to work with him and will only participate if I'm in his line of sight, but he did really well and was looking at himself in the mirror which sounds like an easy task but for Patrick it's good progress as before he's not even looked at the mirror, let alone been able to look at his reflection. I've also caught him watching the TV a couple of times as well, again, this is progress as he's never shown any interest before and even when I've sat him right in front to see if he'll watch he'd just look anywhere but at the screen.

So, at the moment we're encouraged, he's starting off the year well so let's hope these small signs of progress continue. Of course for Patrick though it can never be all good news, as unfortunately he's really 'jerky' at the moment. I'm not sure which medication is not quite right but he had a few days when he was only having one or two very mild jerks and now all of a sudden that's increased and he seems to have a bad hour when he'll have up to 6 lots of jerks. This happens a few times a day and again at night so we're keeping a close eye on that and will speak to Fiona next week.
Night times are a bit of a nightmare at the moment as Patrick seems to have developed an in-built alarm clock that wakes him up at 3:30 every night. He's quite happy to just lie there in his bed wide awake and singing to himself and grinning at me when I'm try to convince him he needs to sleep. This can go on for 2 hours until he does fall asleep again only to re-awake at 7am. So as you can imagine, we're pretty knackered!

I've started my six week 'supportive parenting course'. The first lesson went really well once I got past the introductions. It seems that I'm able to talk about Patrick to anyone in a matter of fact way without feeling upset until I'm put on the spot. When it was my turn to introduce myself and tell the others why I was there I fell to pieces and found it really difficult to even say Patrick's name let alone talk about his condition. I just burst into tears which was really quite embarrassing but also pretty normal I suppose, the others were great and once I was able to explain our situation they were all understanding which helped. Anyway, the course covers things like, dealing with fatigue and stress, time management and learning to deal with emotions which, judging by my outburst, I could really do with!

So, that's where we are at the moment, I'm feeling quite positive and am looking forward to a week of celebrations as it's my nephew Owen's birthday on Tuesday, followed by mine on Wednesday and my brother Alec's the day after!

Hope everyone is well and enjoying the new year.
Lots of Love, Gemma

P.S I will try and get some good video of Patrick being smiley and happy to post on here soon.