Sorry for the late update, the end of the month came and went in a flash, and what a month it has been.
The biggest thing this month is that Toby has started school!! Ok, it’s’ a nursery class but it’s in a proper school with big kids, buses and a dinner hall.
I know I’ve been taking him for one a morning a week for the last term but going 3 days has been a big change for all of us, we didn’t think Toby would sleep at school but he is so he’s managing full days too, he’s shattered by the end of the week but that’s a good thing.
Already he’s starting to join in activities and the teachers are doing wonderful things that he’s enjoying and developing as a result. He’s beginning to do hand over hand (something he can’t do, cross his arms or clap) with some of the toys and is learning the routines of the school.
The really big thing that scared me was that the class go swimming on a Monday morning, swimming is in water and is good fun which means it’s a real seizure risk.
The first few times I went in the pool with him and as predicted it triggered seizures, 32 of them, in 20minutes.
However, it didn’t trigger a prolonged one, and hasn’t yet. Toby is lasting longer in the water, often wearing a life jacket which keeps his face out of the water when he does have a seizure, and is really having a lot of fun. The last couple of times we’ve been on the side with the teacher takes him and it’s been so lovely to see him so happy.
Sadly September has been just as bad as August for seizures, we’ve tried increasing the ‘nasty’ medication that wiped him out to see if would help at all but we’ve seen no impact, bad days are still 60-90 seizures which can be every 60 seconds. Quite frankly it’s exhausting just trying to protect Toby from hurting himself and it’s relentless.
He’s had a couple of longer seizures at school and shown them how quickly he goes blue from not processing oxygen enough, fortunately (??!) the first time it happened we were in school so could see how well he was looked after by the team there.
Early in September we were broken, exhausted from continuous seizures and the pressure of trying to keep Toby safe, we were at rock bottom and had a 3 night stay booked at Helen House. Whilst trying to find something that would recharge our batteries Kim hit on the idea of going away, away on a plane.
Scary stuff but we needed it, we trust the Helen House team so we extended the stay and booked it and off we went to Majorca for 3 nights. It was amazing, the sun was hot, the sea was warm and the food and drink lovely but it was all over in a flash. It helped us to feel a bit better but when you’re so empty it only helps so much.
Toby’s care team picked him up (with Granny Gill) from Helen House and it was clear that he’d had a great time, been well looked after and hadn’t given us a second thought. This was all great news as it gives us the confidence to leave him again.
Have fun for a good cause!
We’ve recently come across a little girl called Amelia who lives in Harrold and who also has Dravet Syndrome.
Her family are fundraising for Dravet Syndrome UK, the charity that has done lots for us and countless other families in the country by organising a Halloween ball.
A ‘fangtastic’ Halloween ball, at The Millhouse Restaurant in Sharnbrook on October 29. There will be a live open auction, music, dancing, drinks reception and a luxury holiday prize draw. To order tickets, at a cost of £25 each, email firstname.lastname@example.org
During September so many people did so much for us, from parents looking after to Toby while we’re at work through to some amazing people doing amazing things:
Ian Simpson – a friend who ran the Great North Run for Toby and raised over £250.
Toddlers sponsored walk – All the girls (Toby was the only boy) from our NCT group did a sponsored walk around Harrold Country Park and raised over £1,000 for Toby’s Trust.
BOFF – The Big Olney Food Festival donated half of their profits to Toby’s Trust, a whopping £2.3k so thank you to all the folk who drank at the bar, donated and purchased auction items and enjoyed the weekend. Not to mention the small band of volunteers who put on a bigger and better festival every year.
People have already been doing things for Toby this month but I’ll save their thank you to the October update!
We’re so incredibly grateful to every single person who donates even a penny to us, we are so lucky and privileged to live in a generous and supportive town, with incredible friends, family and supports scattered all over the country and indeed the world. To all of you, thank you.