Last months update was pretty doom and gloom and it’s so easy for us to get caught in a spiral of feeling pretty down. It can also change at the drop of a hat.
Just a few days after publishing the last update I bumped into a couple of friends in the chemist in town, both were very sympathetic and lovely having read the latest update and were probably a little confused as I was chirpy and on good form, far from the picture painted a few days early. The difference? Toby. He’d had a few days clear, was on great form and was an absolute joy to be with, the result, our mood is instantly lifted.
We’re still tired (is any parent not?) and the monotony of life can get to us like anyone else but when that little boy is smiling away, being cheeky and giving those big, dirty, belly laughs the world is ok, for a short while.
GOSH
At the start of the month we were back at Great Ormond Street for blood tests and an update with Professor Cross to review the new meds, due to a diary cock up they thought we were late, she was early and we got out of the appointment in under 30mins, a world record for us although it is still a 5hr round trip so quite tiring!
The blood results on the new drug are looking good and she was really interested to hear about our experiences with the drug as it’s the first time she’s prescribed it.
Tobes was a super star, normally he’s bouncing around everywhere, trying to escape or shouting and demanding attention however this time he was quiet, played with toys on his own and actually clambered on a seat to sit next to Prof Cross, it was unbelievable and demonstrated when he’s on good form, without as many seizures, he’s brilliant.
Adaptions
We’re almost at the point where we start building an extension at the front of the house for a bedroom and wet-room for Toby, we’re a few weeks away from starting but it’s already stressful.
After not turning up for weeks OpenReach finally arrived to move the phone line and then drilled through the heating/water pipes and due to a comedy of errors failed to resolve it for over 48hrs, pleased to say we now have heating, hot water and a phone line that works.
Some issues with the number of hours respite we’ve used and who’s paying for them hasn’t diminished our levels of anxiety.
The biggest stress is planning on what we need in the new build as, in true Toby style, Tobes doesn’t tick all the ‘normal’ boxes for disabled people.
Our Occupational Therapist who’s been helping us through the process has said that disabled folk are usually co-operative and immobile or un-cooperative and mobile, Tobes is mostly un-cooperative and semi-mobile!
Not only do we have to think about Tobes needs and our desires but have to factor in health and safety for anyone employed to look after him.
Do we put hoists in every room? Do we buy a rising bath? What about the size of the shower?
It’s all really complex as we don’t know exactly what will work best for Toby now, let alone in years to come. It’s driving us bonkers.
And this stuff isn’t cheap. The rising bath so that people can work at a safe height with him costs over £10k, hoists in every room will be about the same. Whilst we are very lucky and grateful to get a grant from the council it’s only going to be around half of the total cost.
Thank you’s
And that’s where we have to say a massive thank you to every single one of you who has given any money directly to us or sponsored anyone of our incredible friends to do some of the amazing, daft and plain hard work tasks they’ve accomplished with Toby in mind. I cannot begin to tell you how grateful we are to be facing these costs with your backing.
Specifically, over the last month we have to thank the Murray’s for their help with OpenReach, The Timlins for copious bottles of wine, John for lending his house to the Geordie lasses and Charlotte for bringing cake and flowers.
And then there’s the crazy (but very lovely Brocks) this time Hattie and her friend Lucy who decided that it would be fun(??!!) to spend 24hrs in a car, on a very chilly and frosty evening. To make it more fun they asked for sponsorship with all proceeds to Toby’s Trust.
It’s you lot that keep up going physically, emotionally and financially. Thank you.