It’s been a tough month for all of us, Toby’s seizure pattern has changed and he’s started having seizures in his sleep.
The first seizure happened just before 5am on a Saturday morning, we had the monitors on as usual and woke to the horrible noise Toby makes when he goes into a seizure, it’s a cross between a deep breath and a scream and it jolts us into action.
We’re in his room, getting oxygen onto him and sometimes breathing for him, within seconds of waking up.
It’s terrifying and unfortunately this seizure was the first of many to come, in the middle of the night and during his naps in the day.
Previously when Toby was asleep we considered it a ‘safe’ time and an opportunity for us to relax a little, while keeping an eye on the monitor.
Now we’re extra vigilant both during his nap time and overnight, we have two monitors on full volume to make sure we can hear his breathing clearly.
We can’t ever switch off, there is no down time, he could have a seizure at any point, and has done lots over the last few weeks so we dare not go into a deep sleep. When he does have a seizure our bodies pump the adrenaline around to make us move quick and respond but then sleep afterwards is impossible for hours due to the chemical ‘rush’ we’ve experienced.
We’ve had to cancel most of our plans to see friends due to this change in his seizure pattern. We’re exhausted and have no idea what may happen so can’t risk being too far away from him. Two weekends ago we got as far as Leicester to see a friend in Leeds before we had to turn around as Toby had three seizures in half an hour, all while asleep. We just couldn’t face being away (we had respite care) if the seizures progressed and he ended up in hospital, or worse, we would never of forgiven ourselves.
The lack of contact with our friends is also hurting us, we need the energy we get from being around people we love to help top us up. It’s a double whammy.
We did make it into London this Saturday for afternoon tea to celebrate Kim’s birthday, we had respite cover till midnight but crawled back into town early and were in bed by 930, exhausted. It did us good to get away for a few hours, and we were proud of ourselves for doing it.
We see Toby being quite weak, he looks exhausted by the end of the school week and just wants to sleep and recover, it’s definitely hard on his little body and head. He’s less vocal at the moment, it’s like the seizures are taking their toll on his brain and he’s trying to preserve himself.
How long will this last? Who knows, a lot of other children with Dravet only have seizures at night so this could the beginning of a significant shift for all of us.
At the start of April it was half term and we were lucky enough to have two sessions in the school pool, it was great as the grandparents were able to come with us in the water and experience the joy that is Toby in the swimming pool.
On both occasions Tobes was on great form, relaxed, warm and moving a lot and that means one thing – Poo in the pool!! Fortunately we managed to catch it before it became disastrous and the pool was closed.
Sadly the second session with Granny Gill ended with a seizure but she got to have some fun beforehand.
Tobes is still scoffing his way through anything that is put in front of him and seems to have an insatiable appetite which is fab to see. Everyone is loving how much he’s eating, him most of all! It gives us all something positive to focus on.
Favourites so far have to be the Chippy Tea that Nurse Laura and Hayley treated him to on the overnight respite and Nanna’s lamb tagine, the boy has good taste!
We’ve been so lucky to have the physical, emotional and financial support from so many people, it continues to amaze us just how much people care and what they do for us.
From food aid parcels from (off duty) Paramedics to friends coming to see us when we can’t get to them and lots of generous donations to Toby’s Trust. From Katie P selling crochet Easter gifts to Matt running the London marathon for Dravet UK and then a generous donation from our American family.
It all means so so much to us and keeps us going through the darker days. Thank you.