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Wow, didn't realise it ...

Posted Nov 13 2009 10:03pm

Wow, didn't realise it had been so long since my last post! Really sorry for the long gap in between news, I know there are some followers of the blog that look forward to seeing how well Patrick is doing and at the moment he is doing very well.

A lot has happened over the past few months so I'll try and fit it all in, Patrick has been seizure free for 16 weeks now, his best run yet. He still has the odd 'jerk' and little spaced out episodes but very few and far between and always very brief. He has settled into a good routine and is sleeping much better, from 9pm - 6am with usually a 2hr nap before lunch then he's wide awake, alert and playful for the rest of the day. He is getting much stronger and his head control has really improved over the last few months, he only loses it when he is tired. He is much more interested in his toys these days. I made a few adaptions to his buggy out of frustration that he couldn't reach his toys without help and I couldn't get a play arch to fit it, I managed to rig a couple of hooks to the sides so I could hang some toys in his line of sight and close enough so he could reach them and it seemed to work wonders. When we're out and about now I hang his favourite tambourine for him and he bashes away all around the shops, much to the annoyance of everyone else but I love it!
I've been keeping really busy and have been getting creative with my new toy, my sewing machine. I was getting so frustrated at the cost of special needs clothing, bibs etc that I've now started a dressmaking course and have set up a website selling bandanna style bibs and hope to be making and selling vests and sleepsuits in bigger children's sizes once I've finished the course. is the web address and all proceeds from the sales go towards stuff for Patrick.
With my new found creativity I've gone a bit gadget crazy, since I've made Patrick some support cushions for his buggy that help bring his arms forward and another one for his positional chair, it makes me mad that his equipment costs at least £2000 but still none of his seats etc have been right for him and he would always sit with bent arms, hands in the air, unless I put his splints on. Now with his new support cushions his physio has already noticed an improvement in his arms, they aren't as tight as they used to be which is great. I've also made him a special support for his bed as one of the problems we have is that he wriggles around in his bed and slips under the covers, as he can't then pull himself out it's always a worry for us that he'll suffocate so I spend all night adjusting him and pulling him back up the bed. With his new support he stays where he's put all night which helps him and me sleep better.

We've finally managed to get the educational psyhcologist round to get the ball rolling on his statement process which couldn't come sooner. We went to visit Linwood School recently and were really impressed. I think it's likely that the council will offer him a place at Linwood and we're more than happy with that. We got on really well with the teacher there and she even invited me along to a teacher training day about switches and switch adapted toys as I'd been speaking to Patrick's OT about them. With the money made from bibs sales and some very generous donations from Patrick's Grandparents we've managed to buy Patrick a selection of switches and switch devices which we hope will start him on the road to communication. The link I've added is to a you tube clip of another little boy playing with a switch similar to Patrick's, just to show you what a switch is, I will try and get some good video footage of Patrick soon. We've just returned from our holiday at Centre Parcs which was brilliant. Patrick was on top form all week and as you can see from the photo's, he had a really great time. As ever we made sure Patrick was included in everything we did. We took him swimming, the pools are really warm there and the disabled facilities are great which makes life a lot easier. We went ten-pin bowling and with Isaac's help Patrick knocked them all down! He joined us for a round of mini golf and even helped me with on the driving game in the arcade!
We have a mad schedule over the coming weeks, it's always hectic this time of year but even more so as I'm going into hospital for a few days to have my wisdom teeth out (would usually be done in a day but I have a blood dissorder so need extra treatment). I'm really not looking forward to it as I hate the idea that I'm going to be away from my babies and out of action for a few days, I'm sure they'll all cope without me, not sure I'll cope well without them though :-(

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