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
