Dare I write this? It’s been a good month….deep breath, everyone still ok?
Toby has still had hundreds of seizures but as a family, and a couple, we’ve cracked on and done lots of things, from Kim’s special birthday weekend away in the Cotswolds while Tobes was in Helen House through to feeding the giraffes at Whipsnade zoo (sorry Toby, we enjoyed that without you!) and as I type we’re on holiday in Wells-Next-The-Sea.
We’ve been to this flat a couple of times before and it has become our ‘go-to’ holiday place. It’s a good sized two bedroom place with large open plan living that looks out on to the busy street and views over the estuary. As well as the gorgeous beach just twenty minute walk away there’s the fantastic Holkam Hall and estate with its walled garden and deer park and decked walkway to their beach, it’s a place that’s great for the soul as well as a little boy.
Over the last few days we’ve pushed each other out of our comfort zones which has enabled Toby to experience more than we’d normally let him, for fear of what may happen. From playing on the beach to rolling on the grass for longer than we’d normally allow, we tried our upmost to let Toby do the things he loves to do. These experiences are pretty much guaranteed to cause a big seizure but we had the oxygen and rescue meds on hand and we coped, we did what we do and the great thing is when it happened on the beach the hundreds of people around us were none the wiser that we were administering oxygen, timing the seizure and mentally planning our escape route.
Toby has stayed up late, sitting on the quayside watching the sunset, he’s had long baths and thoroughly enjoyed a little more freedom.
It’s been uncomfortable at times but rewarding, we’ve had a fabulous family holiday and made lots of memories.
Toby’s had a couple of doctors’ appointments over the last month, the first was with his neurologist who sadly didn’t have a lot of options for us but was pleasantly surprised to see him looking so good as the last meeting he was on the Perampanel drug which took him away from us totally.
Toby’s Paediatrician and Epilepsy nurse were also in the meeting and all commented how good he was looking, we honestly put this down to the blended diet of real food pushed through the tube into his tummy. He gets some weird concoctions but they seem to be doing him good, so much so that after analysing a week of the food we’ve given Toby our dietician is supporting us as much as possible within the boundaries she has to work within, which is fabulous news.
We also met with an orthopaedic surgeon to look at Toby’s wonky legs and feet, fortunately the really nice doctor doesn’t want to take immediate action for surgery on Toby which is good to hear but he is going to keep a close eye on him to monitor his progress.
What a difference time makes
Sometimes our daily lives feel very static and monotonous and we can feel that nothing changes however thanks to the power of Facebook we can see just how much life, and Toby has changed.
Our ‘memories’ on Facebook a year ago were of Toby coming out of surgery to change his PEG to a Mini-Button (he used to have a permanent tube sticking out of him, he now has a type of USB connector into his tummy). Having a general anaesthetic is always a worry but he did brilliantly.
Two years ago Toby was in a coma.
After three hours of seizures he was intubated, induced into a coma and put on a life support machine, it was a dark week when we didn’t know what would happen, we feared the worst but instead Toby came to and within thirty-six hours of waking up we were home, and he was smiling and showing us how to make the most out of every day and not dwell on what’s happened.
We’re very fortunate to have a lot of support from friends and family but also get support from social services who pay for a care package for us. We use the hours to ‘keep our heads above water’ a couple of times a week, we have nurses who look after Toby while we work, do household chores, go shopping or often, on a Thursday, have a couple of hours to ourselves in the pub.
We never take this care for granted, it enables us to keep sane and to have the occasional treat, the team at Amegreen are great and we have total confidence in them which means we get to go and enjoy a day out together.
This month we used some of our respite hours to go to Chelsea Flower Show to celebrate our 10th wedding anniversary. We had a truly fantastic day. Going into London for the day and feeling thoroughly relaxed showed us how far we have come. It simply wouldn’t be possible without the immense amount of support we get from our family, friends, community and the professionals who all give us the energy to enjoy life despite it’s challenges.