Brace yourself, it’s a long one, get a cuppa or better still a glass of wine then sit back and read on….
March didn’t start well for us, we all had terrible colds with hacking coughs and I was still recovering from my hernia operation and couldn’t lift Toby at all. Toby was having a seizure every day lasting up to three minutes which is a lot better than it was but is still a very long time to watch your child convulsing and barely breathing. We always put him on oxygen and were often giving him a few rescue breaths to start his breathing again.
By the second week Kim was struggling. Despite lots of help from grandparents, the illness and lack of support from me was wearing us all down, fortunately Helen House came to the rescue and gave Kim and Toby a couple of nights emergency respite care.
Kim managed to get some rest while other people looked after a poorly Toby and came home feeling slightly better. I’m sure a lot of you will have had this horrible chesty cold and it feels impossible to shift.
Over the last month we’ve come to terms with the fact that Toby’s development is now significantly behind. Up until Christmas we thought he was ‘there or thereabouts’ and the delays were caused by so many trips to hospital however now there a real noticeable differences between Toby and children of a similar age.
He crawled late but has not shown signs of being close to walking yet, his muscle tone throughout his body is weak and he can’t put all the ‘bits’ together which will enable him to stand up. Compounding this is his ‘hyper extension’ in his feet, essentially his right foot turns out and his left turns in, great for going around corners but not standing up straight! At point of writing this Toby’s just come back from the orthotics department where he’s had his new special Piedro boots fitted, very smart they are too!
In all seriousness, they are good looking little brown boots, rather than clumpy horrible things. Toby’s got a high quality pair of boots that are designed to do a job through the wonderful support of our NHS Orthotics and Physio team.
We also get help from the Speech and Language team as Toby’s speech hasn’t moved on from the ‘da da’ sound, flattering as it is to think he’s talking to me it would be good to hear some other sounds from him.
Added to these challenges Toby has stopped eating. Since early February he’s slowly being rejecting food, pushing your hands away and refusing to let anything near his mouth. This has been extremely stressful as it’s the one thing that seemed to be going well. I remember our health visitor watching him eat when he was about nine months old and she was astounded by the quantity going in him. At this point we thought it was normal fussiness and continued to battle at every meal.
Unfortunately this trend continued and by the start of March Toby had completely stopped eating. Thanks to the swift action of our Paediatric Consultant we saw a dietician and started Toby on Paediasure, a shake with all the calories and nutrients he needs. Fortunately he’ll still take a bottle so getting this into is possible although he won’t take the full amount he’s meant to over a day. He’s thirteen kilo’s so we’re not worrying too much at the moment!
Sadly on the 17th Toby had a long seizure, over twelve minutes long and due to being poorly he poured with mucus during the seizure and aspirated some of it despite us using a suction machine to try and suck it all out. Inhaling mucus is quite dangerous as it gets into the lungs and can cause pneumonia so we ended up in hospital for the evening while Toby had x-rays and strong antibiotics. Sadly the ward was full of kids with infections so we went against doctors’ advice and discharged ourselves from hospital late at night and took Toby home on the promise we’d return the next day to continue with IV antibiotics.
Occasionally we have to do what we feel is the right thing for Toby and staying on the ward often isn’t it. We now have a feeling when he’s going to be ok or still at risk of seizures and we’ll never jeopardise his health on a whim, every decision is carefully calculated and we take into consideration that we have a lot of powerful rescue medications at home, oxygen tanks, monitors and suction machines, the same equipment as the hospital. Having said all that it’s tough going against doctors orders.
Since then Toby has continued to have seizures almost daily but they are shorter. Perhaps this is the latest increase in one of his drugs making an impact? Perhaps it’s just how it was always going to be or perhaps it’s because he’s older and his brain is developing? This is the problem with neurological issues, you just don’t know.
Now the good news
Two days after we discharged ourselves from hospital Kim had a phone call from Sebastian’s Action Trust, a charity that works with families like us over a large area. If we could go tomorrow they had a cancellation at their holiday facility in the countryside between Winchester and Basingstoke.
We didn’t have plans so off we went on Friday morning for a couple of nights at The Bluebells. The closest we’ll ever get to spontaneous these days.
Sebastian was an amazing little boy who sadly died of cancer aged nine, he was a force of nature and I beg you to click HERE and read his story as it truly is inspiring. His legacy was to build a holiday home for families to use together and so the trust was born.
The Bluebells is like millionaires house, it has two four bedroom self contained flats on the two floors, a swimming pool, play room, art room, cinema room, music room, sensory garden, climbing frames, slides….the list goes on. It’s like giving a four year old the Argos catalogue and telling them to pick what they want…all of it!
The place is gorgeous as well, not just functional and practical but really well decorated and a child’s paradise. Sadly Toby had hundreds of partial seizures on the Saturday which paralyses us with fear as it’s an indication of a big seizure, as such we get afraid to leave the safety of a fixed location (which an ambulance can find) and all our emergency gear so no walks or trips to the pub but we did manage to enjoy the facilities on site. Toby was a lot better on Sunday and we managed to take him in the pool for nearly fifteen minutes, it doesn’t sound a lot but the poor little chap only has a few baths a week as the excitement often triggers seizures.
We also used the opportunity to catch up with a fellow ‘Dravet Mum’ who has been amazing to us, it was lovely to chat and catch up over dinner but I’m not entirely sure my idea of ‘gluten free’ matches hers when I’m shopping in the supermarket!
Months of planning came to fruition on the 22nd when Jerry Oxley took over the kitchens at the Cowpers Oak to cook up a storm, serving just under one hundred people the most amazing freshly cooked tapas.
Now this sounds lovely and it was but I need to put some of this into context.
Kim and I used to go for a couple of drinks to the Cowpers Oak most Friday’s after work, we’d sometimes stay for a burger or be back over the weekend for dinner. Jerry is one of the regulars who we’d chat too over a pint, a ‘pub friend’. Tim & Holly are the landlords of the pub and have done wonders with it since taking over about the same time we moved to Olney. The team they have there are also lovely and we enjoyed our Friday night chats.
When Jerry (plasterer by trade) told us his plans to take over the pub and cook for Toby we were gobsmacked, these lovely people were doing something special for us and our little boy, we welled up. It then went on, the staff volunteered to work for free and Tim put all proceeds towards the trust fund, it really was overwhelming.
Tickets sold out in weeks.
We arrived as the first sitting was coming to an end, the pub was buzzing. A combination of great food, lovely atmosphere and a good cause had got everyone in a fantastic mood. We talked to lots of people and when they drifted off welcomed the next sitting of diners.
It was very emotional for us, most of the people we’ve met since moving to Olney were in the pub that night, having a great night served up by a wonderful set of people, it made us realise just how lucky we are to live where we do.
Tim messaged us the next day to say they’d raised over £1500 for Toby’s Trust, quite how they did that I don’t know, all I know is that it is an incredible amount of money and we’re exceptionally lucky to know such wonderful people.
Back to Helen House
We’d pre-booked a stay in Helen House at the end of the month and whilst Toby was being looked after and played with we went off and had a couple of days of ‘us’ time.
I’m sure most parents feel that they lose a little bit of themselves when they have children as they aren’t able to do the things they used to and we’re no different. I guess the difference is that we don’t feel able to put the responsibility onto other people to babysit Toby in case the worst happens. With Helen House they have qualified nurses on duty on a one to one basis all the time, if a doctor isn’t on site they are on call and the John Radcliffe hospital is less than five minutes by ambulance. It’s as safe as we’re ever going to get.
We had a fantastic lunch out and then drinks in the evening, it felt very good to be ‘normal’ for short time.
Sticking with Helen
As the last day of the month dawned we set off to London for our long awaited appointment at Great Ormond Street to see Professor Helen Cross.
We’d asked to be referred to her back in early December when things were really bad as she is at the forefront of treating difficult epilepsy and looks after a number of Dravet children.
The journey down wasn’t easy, but mostly because we were stressed and fearful of what might happen and Toby was being a normal, very loud, shouty child next to the quiet carriage but we got there in one piece.
We didn’t have a lot of expectation for the meeting as we know there isn’t a miracle cure however we came away feeling more positive than we have from most other meetings with neurologists.
Professor Cross took an interest in Toby, his health and development and talked about the near future, what came across to us was her passion for treating her patients and getting the best for them. She agreed that the Ketogenic diet is the best course of action over the coming months and that there are some interesting development in new drugs coming along, she also wanted to play with the combination of Toby’s drugs to see if we can reduce some of the sedatives and give his brain more chance to grow and expand.
All in all, a good meeting and a good way to end the month although the train journey back was very stressful with Toby having lots of small seizures and us terrified of having to cope with a major one, especially when the train stopped for over twenty minutes due to something on the line.
It’s been a busy month and there’s lots coming up. Helen’s doing a Triathlon, James is running the London Marathon and Three Idiots are paddling the length of the Severn all for Toby’s Trust.
As ever, thank you to everyone who supports us on a daily basis, particularly our families who are incredible, as well as all the donations and the amazing support at events like Toby’s Tapas, we’re very lucky to have you in our lives.