Once again it’s fair to say a lot has happened this month but I want to start with a note of thanks, well, several actually.
Firstly to the ‘everyday heroes’ who get us through the day to day.
In context, we ‘qualified’ for a respite package back in May but so far no one suitably qualified or willing to take on the job has been found so it’s a massive thanks to Nanna, Grandpa and Granny Gill who look after Toby so that I can get some work done, they never ask for anything in return other than time with Toby and it gets us through the day to day. They’re there at short notice and do whatever we ask and never flinch when things with Toby go pear shaped.
We do get a few hours respite a week from ‘Respite Ruth’ and ‘Carer Claire’ who give Toby so much fun and smiles and we couldn’t do without them. Again, they play and enjoy being with Toby even when he’s not good and things aren’t going well.
Thank you all for helping us get through each day and week.
Responsibility
I can’t really go much further without talking about ‘the incident’. What do you mean you haven’t seen the photos?
Toby has a walking frame, a mini-zimmer, and was practising walking towards me as I encouraged him, he was doing brilliant right up to the point I stopped the frame against my toes. Now, it’s got little wheels at the front and Toby was pushing the cross bar, you can imagine what happened.
The frame slipped under him and with his full body weight behind him he smashed into the tiles of the kitchen floor.
My fault for not thinking or catching him, fully responsibility taken.
The local GP’s were ace, we were home less than 25mins after it happened with the reassurance that it was superficial damage only.
The swelling started the next day, and got worse. And worse.
By two days later he couldn’t see out of one eye and the other was mostly closed.
Then the bruising started.
Three weeks later he’s still got two black eyes.
My bad.
(the photo is 2 weeks after the incident, I don’t want to frighten you!)
Diet and seizures
Toby’s been on the ketogenic diet for 4 months now, a super high fat diet that makes the body produce ketones to use as fuel rather than carbohydrate and sugar as you and I do.
There’s been a reduction in the effectiveness of the diet over the last couple of months and potentially this is because his body isn’t in a constant, steady state of ketosis (we do a blood test twice a day to check) so the dietician asked us to give him a 20ml dose of a ‘super super’ high fat substance when we go to bed.
It initially impacted his ketones and made them better but that only lasted a few days, what then started was a terrible tummy ache that left Toby miserable and grumpy, we lost our little boy for two weeks as there were no smiles at all. That’s a real downside of a lot of the medications and treatments we’ve tried, they have a significant impact on how Toby feels or his personality. ‘Losing’ him for weeks on end is a horrible thing and fortunately we stopped the new feed and have seen a return of the smile and cheeky nature which is great to see.
When friends ask us how Toby’s been they often ask about seizures and ‘big ones’ – the full ‘tonic clonic’ convulsions and while we give an answer (12 this month if you’re interested) it doesn’t describe the whole picture.
Twelve seizures is tough, five were on the same day. It’s a real adrenaline squirt and action stations when it happens however, the daily partial seizures, the little tremors and shakes are almost worse. They cripple us with fear about what might happen and put us totally on edge to the detriment of everything else around us.
We can be talking with friends in the street or someone who has popped in for coffee and we’ll see a twitch that you won’t even notice but it means our concentration has shifted, we’re watching Toby, thinking through the plan of where we put him, what if we need drugs, when to call an ambulance and whilst we are trying very hard to stay engaged, we have unfortunately been gripped by the anxiety of what might happen next.
That’s the real struggle, not being the people we were or want to be, we hate that we have lost a bit of ourselves.
Helen House
We’d pushed our visit to Helen House back as we’d only got 3 nights left this year and didn’t want the gap between November and the New Year to be too big, in hindsight we shouldn’t have waited so long as we ‘limped’ into Helen House exhausted and desperate for a rest.
The day we arrived Starlight were performing a panto and lots of children who visit Helen House were invited so when we got there it was lively, busy and full of familiar faces of the care team and parents we’ve got to know.
Sadly Toby went into a fully convulsive seizure within fifteen minutes of arriving and it was a bad one, the longest for months and we had to give ‘rescue’ medication to try and bring him round. Our first line is midazolam, a fast acting, short lived muscle relaxant (your dentist might use it to relax your jaw during surgery) which knocks most people out. Fortunately it seemed to work and Toby came round, very groggy and crying his eyes out inconsolably for the best part of an hour.
Fortunately though Toby had chosen to have his seizure in HH. Rhian was looking after him and is a trained nurse so was great at being in the background getting the stuff we needed. Sabine is hugely experienced and kept popping in and out to assess the situation and report back to the doctors. Gill is a doctor we’ve not met but came as quick as she could to support us. We really can’t get better care than that.
Whilst we were desperate for the rest, with Toby in poor shape we didn’t feel able to be far away so thoughts of ‘date night’ in the Cotswolds were abandoned and we stayed close by in Oxford. By the last day he had perked up and was in a much better state but sadly we didn’t feel as rested and relaxed as we wanted to feel but at least we’d had three nights of not watching and listening to monitors.
Birthday
On the 22nd of November we celebrated Toby’s birthday! A day we had thought we’d never see but Toby got here and was bouncing!
He loved (the look of) his Bob the Builder cake and all of his presents and cards.
So many people we very generous, we all feel very lucky, thank you!
Impact
Someone asked us recently who I write this monthly piece for and why.
To answer the second part first it’s a sense of responsibility. A huge amount of people have donated money to Toby, lots of them strangers or friends of friends and I want to tell them what’s being going on and to say thanks for their support.
For example, we’ve recently ordered an Emfit seizure monitor for under Toby’s mattress to help detect night time seizures. It was £500. A lot of money however thanks to the generosity of so many people we are able to buy it using funds from Toby’s Trust. Thank you again for that support as it means buying potentially lifesaving equipment doesn’t have to be a difficult financial decision.
I often think about our friends who we don’t see that often when I write this, the people we grew up with, went to school and uni with and have worked with over the years, it’s like a letter to old friends but I never think how much impact our little boy has and how far his story has spread.
Imagine sitting in the doctors waiting for our family flu jabs when the lady with the polite little girl starts asking how Toby’s doing. Specifically. She knows who he is. Sam quickly explained that she follows this blog (hello!) and we’ve several friends in common.
It’s such a lovely, warm feeling to know so many people are rooting for you, even though we’ve never met. It’s also a very real reminder of how many nice, genuine and caring people there are out there. Thank you to everyone one of you who supports us, even that Facebook ‘like’ really does mean a lot to us.
And finally….
Click to open the full PDF
We got nosey at Helen House and had a tour of the offices and met a lot more of the team while we were there which was great as we know a lot of them already and they feel like an extended family.
One fact that shocked us is that this year the fundraising has fallen short of their target.
There are obvious reasons for this, the economic climate being a major factor and fortunately the charity have reserves and can carry this shortfall, this year.
But we want to make sure this doesn’t happen again this year.
Further shortfalls will impact on the provision of services to families like us, and lots of other families in similar situations.
This year, as every year the charity runs a Christmas Appeal. We were honoured to be asked a few months back if Toby could be the ‘face of Christmas’ so all the letters that go out have his face and story on them.
Typically this appeal raises between £25-40k.
As it’s Toby’s face we want to help them get towards the top end of that target so over the next few day’s we’ll be posting links and suggestions of how you can help our hospice. From buying Christmas cards to playing their lottery there’s loads of options for every budget.
Please help us to raise some much needed funds for an organisation that is a lifeline for us and a huge amount of other families.
Thank you.