Some Very Welcome News…

Today I had some very welcome news. Jacks school has a shop in the town centre, and over Easter they are making some improvements. One of these will be an installation of a Changing Place. This will mean that Jack and others who are unable to use normal toilet facilities will have somewhere to be changed in dignity. These toilets have hoists and changing benches in them as well – to help carers like me who do a lot of lifting! It might not be a big deal to some, but to me – and to Jack too – it means that we can actually go and do some shopping in town without having to cut our trip short.

Also, second piece of good news (don’t faint with shock), it seems that Motability is reducing the deposits they charge for WAVs (Wheelchair accessable Vehicles). We have been looking for a decent car for a good couple of years now, and the cars we have all looked at and thought “you know what, that’s really nice, and it doesn’t stick out like a sore thumb” have all had silly deposit requests….usually between 10 – 12k. Now though we have managed to save up enough and have rung one of the conversion companies who convert and sell the car we like, we have been told the deposits have been slashed down to, in our case, £7000! This is wonderful news obviously! We have a demo booked in a couple of weeks, but I get a horrible feeling Jacks chair is going to be too cumbersome for the car in question – but we shall see. If so, then we will end up with some sort of van like vehicle – which we soooo didn’t want. Just for once, we wanted a nice family car that we will enjoy driving – not something big and bulky that looks like a van with a ramp on – which the other cars we have test driven have essentially been. But we shall see what happens in a couple of weeks.

Happy days are here again!

So here we are – the summer holidays. 

As I write Jack is enjoying a lay in, Matthew is out on his bike and Hannah is chatting over the fence to her friend.  Ruby the schnauzer is in the garden chewing something no doubt (as 18 week old puppies do!)  As for me…still in my dressing gown and comtemplating one more cup of tea before I get off the computer and do something constructive! 

The long summer holidays are a tricky time for us.  It’s not easy to get out and about unfortunatley and each year it gets more difficult.  It’s not easy to get Jack in and out of the car and it doesn’t help that the wheelchair service seem hell bent on Jack having the biggest, heaviest, vastly over engineered chair possible.  We have in the past obtained chairs for Jack on the “voucher” scheme, and we managed to get a more travel friendly chair, but he grew out of it rapidly, and the hoops we had to jump through to get the chair in the first place put us off, so just for now we have gone back to the NHS scheme.  Getting out and about on my own with Jack and the others is very difficult – so I don’t tend to do it!  We do get respite care as you know, but not a lot during school holidays – especially the summer, and we also get some cover from the Home Respite Scheme offered by the local Paediatric Childrens Community Nursing Service – but they are now so vastly over subscribed, and there are now actually only two nurses available to provide the service.  We get 3 hours every week of the holidays technically – but with them being so short staffed it’s not always possible for them to provide this.

As for Jack himself, in a couple of weeks he will be 14!!!  He’s doing well at the moment.  He had a medication increase a few weeks ago, and although there has been no dramatic results (which to be honest we were not expecting anyway!), at least his medication is now in line with how much he weighs – so we know we are doing the best we can without doping him up to the eyeballs.

Jack has now finished his first 3 years at his secondary school and will be moving to a new class in september.  New teacher, new room and new classmates!  Not sure how that will pan out and I am anticipating some difficulties to begin with – but he will soon settle down….especially if he is fed well!

One more piece of news:  The website which alerted me to the fact that Jack had M-CMTC syndrome now has a group on Facebook.  Join HERE