Happy New Year!
Did you have a good Christmas? I hope so.
It’s a difficult question for us to answer, we certainly spent time with friends and family, ate too much and had lots of presents but did we enjoy it? Kind of, but the daily partial seizures, the threat of big seizures, the worry about Toby’s temperature and excitement levels is always there, in the front of our mind and it takes the edge off enjoying the simple things in life.
We are, however, very lucky that all of our family and friends have been incredibly flexible and done everything they can to make it as easy for us as possible. We’re extremely grateful for their understanding and thoughtfulness.
Toby started December brilliantly, he had an 18 day period without any fully convulsive tonic clonic seizures. It was the longest period he has had without a tonic clonic seizure since he was 8 weeks old, and it was a blissful 18 days. Sadly all good things have to come to an end and leading up to Christmas he was having a full seizure every other day when he was totally unconscious.
On top of that his ‘4 o’clock thing’ are back. He has hundreds of myoclonic jerks and twitches every day. Whilst he’s still fully conscious these are ‘proper’ seizures and still impact him and us. They are incredibly difficult for us to watch, when he starts these jerks we’re so on edge, we move oxygen closer to him, grab rescue medication just in case, try to ensure he won’t fall and hurt himself and feel paralysed by the fear and anxiety.
Often he will get through the day without going into a fully unconscious tonic clonic seizure which is great but for us it’s exhausting, 3hrs of constant seizure activity mean the adrenalin that keeps us on edge and ready then wares off and we collapse, wiped out for another day.
Charity starts at home
That’s what a near neighbour of ours said when he brought round a generous donation to Toby’s Trust. Instead of his company sending Christmas cards he wanted to donate money and having seen the ambulances outside our house frequently decided that Toby was to be the lucky recipient this year.
It’s incredibly emotional having someone knock on your door wishing to help your child, thank you Colin, when you left we both cried.
Disabled living
At the start of December, a couple of the Occupational Therapists from the hospital came out to see us as we wanted to discuss future options for our house and Toby.
We’re already suffering from bad backs as Toby is pretty heavy (over 15kgs) and doesn’t help to take his weight by holding on or wrapping his legs around you, in fact he makes it worse by throwing himself backwards as he thinks it’s the best thing in the world ever.
With that in mind we want to plan for the future, it’s unlikely that Toby will ever be fully mobile and after a seizure he’s totally unconscious and floppy so moving him is difficult. We thought that as we have a wide porch with a straight staircase some form of chair lift would be an easy answer but due to safety reasons (seizures half way up the stairs) the only option is a lift. On top of that our bathroom is too small to offer any disabled facilities.
The meeting left us with lots of thoughts running around our head, from converting the living room to a bathroom and bedroom, to a lift from the living room into our bedroom. There’s no easy answer and it means knocking the house around to ensure Toby’s needs are met in the not too distant future. There’s lots to think about but we’re lucky to have a lot of support from both the NHS and everyone who has donated to Toby’s Trust as at least we have options and can make changes to meet Toby’s needs.
And finally
What a year 2015 was. We saw highs with Toby as his seizures reduced in length and lows when he ended up in a coma for 5 days in intensive care. We’ve started some new treatments and finished others. Toby stopped eating and had a PEG so he could be fed through a tube. Kim returned to work, something we could never envisaged being possible. Life isn’t better or worse, it’s just different. The anxiety and stress of seeing your child have a seizure does not lessen with experience. However, we are undoubtedly better at coping with the daily challenges and we constantly try to find ways to make life more enjoyable and manageable.
Throughout it all though we’ve had incredible support from all of you, daily support from our family, phone calls from friends, messages, kind words, meals, presents, goodie bags and hampers.
You’ve raised thousands of pounds for Toby’s Trust by simply donating directly or by sponsoring some of those people who’ve swam, run, cycles, kayaked, cooked, sold and shaved.
You’ve also raised thousands of Helen House, the Hospice in Oxford that has provided us with vital respite, support and advice.
We’re all incredibly lucky to have all of you in our lives. Thank you for everything you do for us and Toby, you really do help us get through the dark days.