Through June we’ve continued to reduce Toby’s clobazam, one of the meds that helps ‘calm’ his body and brain down to reduce seizures. It’s a stronger version of Valium, so you can imagine what that does to him. By reducing it we were hoping to see a more alert, possibly more steady on his feet little boy which I think we have. He’s chattier and quite mischievous and of course, smiley! He’s also stubborn and very wilful which is good as reducing the drug has shown that he can shine through given the chance.
The downside of this is that the frequency and violence of his seizures has increased. He’s needing oxygen more often, occasionally rescue breaths to get him breathing, but thankfully he has not needed any rescue medication to bring him out of them.
Throughout June he’s had a full tonic clonic seizure nearly every day, it’s exhausting for him, and us.
As the heat is such a problem for Toby we used some of Toby’s Trust money to buy an air con unit for his room. It sounds like an aircraft jet engine but it really does cool the room and provides a safe haven for Toby to play in on a hot afternoon, so thank you to everyone who has contributed to Tony’s Trust, we’re so grateful.
Toby has an Education Health and Care Plan which details what his needs are and how they are to be met. There’s an annual review which his teacher fills in to describe progress and new targets and we wanted to share with you some of their comments as they made us chuckle at how well they know our boy but also how well he’s doing.
- He is a happy friendly little chap who makes good eye contact and will respond to positive interaction with huge smiles, vocalisations and hugs.
- Toby is a happy little boy who appears to enjoy coming to school, playing and learning. He is always keen to get into class and onto the floor to access the toys.
- Toby appears to have settled into school life very well, indeed I feel he took everyone by surprise and started to attend 4 full days much sooner than anticipated.
- He can be strong willed and determined showing a real strength of character in someone so young.
- Toby is able to separate from his parents well and will on occasion wave good-bye, he is not distressed when they leave.
- Toby does not appear to show an awareness of his peers and will crawl over them if they are in his way.
It’s like a good school report. It gives us a warm fuzzy feeling that Toby is happy and surrounded by people who understand him and care for him, but also made us laugh at his distinct personality traits. We have no idea where he gets them from…
We have so much to be grateful for and it’s important for us to say thanks to everyone who makes life easier, happier, nicer and more relaxed for all of us.
Be that Toby’s barber, Scott, who really looks after him and makes a fuss of him through to friends we see around town who ask and want to know how Toby is doing and those of you who donate to Toby’s Trust on a regular basis which mean we can afford to buy things like AirCon units.
Then there’s all the help with get with looking after Toby. Kim recently had a long weekend away in Majorca to celebrate her 40th with her best friends which meant it was Daddy Day Care for a few days. Fortunately (for Toby) I’m far from on my own and a whole host of grandparents and carers were on hand to ensure all went smoothly and Kim could relax and enjoy herself.
It’s not the life we’d have chosen, holidaying separately, and not spending time with our little boy as a family, but it’s the life we’ve been handed and we’ll make the most of it.
Thank you to all of you that make that happen.
Talking of life changing….
A few weeks back Kim’s boss asked her to write a ‘guest blog’ for his weekly update, taking up the challenge she wrote this fantastic piece (http://www.tobystrust.org/2017/06/12/discovering-the-true-value-of-team-work/) about teamwork, putting her personal life in a work context, it went down really well.
She’s followed it up with an article on ‘The Power Of Acceptance’ a piece that many people have complimented Kim on as it’s such a powerful piece of advice, see what you think:
The Power of Acceptance
In a recent coaching session, I was introduced to a simple but powerful tool called CIA – Control, Influence and Accept, a technique for dealing with life’s frustrations and the events that cause them.
Understanding whether you can control the cause of the frustration by changing your actions or behaviour, influence those people who can help make a change and help you achieve your goal or alternatively you must accept the situation as it cannot be changed, provides a productive way of dealing with situations that otherwise can hold us back.
I have personally experienced this with accepting Toby’s illness. When he first started having seizures when he was 8 weeks old we had no experience of epilepsy and had no idea how life threatening they were going to be. We desperately tried to control his seizures, working with the neurologists and paediatricians to find out what was wrong and how to stop it.
As we struggled through the first couple of years of his life, the seizures became more serious with ambulances at the house every week and Toby ending up in a coma for 5 days. After trying a dozen anti-epileptic drugs and the ketogenic diet, we realised that we’d run out of options and controlling his seizures was not going to happen.
Once we realised we couldn’t control his seizures, we moved on to trying to influence them. Heat, illness and excitement all cause seizures, so we did everything we could to stop them before they happened, desperately trying to keep him cool, giving him paracetamol on top of his three antiepileptic drugs and limiting access to things that he would enjoy, such as the bath, swimming or a trampoline. This had some effect however it didn’t prevent them and meant he wasn’t allowed to have any fun. We’ve got a lovely happy, little boy, there was no way that fun was going to be banned.
Our breakthrough came when we finally accepted Toby’s condition, and realised that he is not going to get better, the current drugs that are available don’t work and we can’t live our lives not letting our little cheeky boy have some fun. This acceptance has freed us from the constant battle of trying to control something we can’t change. Giving us more energy to cope with the day to day challenges Dravet throws at us.