February had lots of positives but when the negatives came they caught us off guard and really shook us both up.
Lots of smiles and laughter
Toby has been on good form, he’s still eating bits of crunchy, textured foods with lots of flavour, that’s me trying not to say he’s eating crisps, lots of crisps! He’s still getting lots of goodness through his button so a few crisps here and there won’t hurt him.
We’ve stabilised his drugs after reducing one of them and his character is really shining through. He’s getting cheeky, naughty even and it’s great to see him pushing boundaries like any other child would.
He’s standing lots more too, whether this is the drugs reduction or the magic shorts he got before Christmas we don’t know but it fills our hearts with joy when he crawls to the kitchen table when we’re eating, pulls himself up and then nibbles on our food, it’s such a normal, natural thing that we haven’t had for so long and it’s so lovely.
Last weekend Toby was brilliant, he was really good fun to be around, lots of laughter, smiles and even hugs. Putting him to bed that night and I’m being a naughty Dad and tickling him before bed, he’s belly laughing and Kim is telling us off and we’re ignoring her because it’s funny.
The very next second he’s in seizure.
He makes a loud scary noise, cross between an intake of breath and a scream. His face is contorted.
We’re staring at him, our brains aren’t registering what we’re seeing.
His eyes are flickering, his arms and legs are convulsing.
Three seconds in and are brains are starting to catch up.
His face is draining of colour.
Kim reaches to get the oxygen from under the bed. It’s always at hand.
Toby’s lips are going blue.
I finally start to move, getting down to him and unzipping his sleeping bag so he doesn’t get too hot.
He’s very blue.
I can see his chest isn’t moving.
He isn’t breathing.
Kim passes me the mask but I know it’s no use without more action.
My hand is on Toby’s chest, he’s definitely not breathing but is still convulsing.
I lean forward, pinch his nose and then blow into his mouth.
Once
Twice
Three times
I feel his chest start to rise on its own accord.
The oxygen mask is on.
His colour starts to return.
He’s still convulsing.
We’re watching, timing, planning our next move.
With a gasp and a sigh, the seizure ends.
It was the longest couple of minutes I can remember for a while and a real reminder of how quickly such a brilliant, normal, happy bedtime routine can descend into a terrifying situation that pushes us to our limits. Dravet never gives any of us a break, it’s always there to rob us of happy times and remind us of its presence.
That seizure wasn’t much different to the ones he has nearly every day, he doesn’t always stop breathing but everything else was pretty much the same however it was the way in which happiness was displaced so quickly that really shook us up, it came from nowhere and stunned us by the ferocity of his condition.
Physically it leaves us on an adrenaline high with a massive crash not long after, it’s exhausting. Mentally part of us plans for next time and what we’d do differently, we play over and over the rescue breaths and examine if we did it ok and then finally there’s a deep sadness for what Toby has to go through, it’s not fair, he didn’t ask for this but still he’s a happy little chap.
Respite
We’re incredibly lucky to get the daily support we have from our parents and the weekly respite that social services pay for. We have two shifts a week with a nurse and a carer looking after Tobes which gives us a break to be normal, work late, go for a drink or recently, go to the gym. We’re trying our hardest to use the time we’ve been given to get ourselves as fit as we can so that we can care for Toby the best we can. Be that strength for lifting him or just being healthier to ensure we’re always there for him.
We do have fun too! We ‘bank’ a couple of hours respite each week so we can then have the occasional overnight care. In the past we’ve used it so we could both go to a Christmas party and this month we spent a brilliant night away in Birmingham. Karen (Kim’s sister) had brought us a night in the Rotunda as a special treat and it was stunning. A wedge-shaped studio nineteen floors up with the outside wall totally made of glass, the views were incredible.
It’s nights away like this that keep us going.
Helen & Douglas House
Last month I described the shock we felt that the charity has had to close Douglas house so when we were asked to do a radio interview for JackFM, who are doing a radiothon to raise money for the hospice, we jumped at the chance. Hopefully on the 7th-9th of March they’ll raise lots of money for the hospice and maybe our story will help a little.
I’m also very pleased that Helen House has been nominated as one of this year’s good causes that the Big Olney Food Festival will support. It’s a privilege living in such a fantastic community and for everyone to want to support the hospice which does so much for us and other families with severely ill children is amazing.
Thanks as ever for your kind words of support, it means so much to us all the time.
Tim & Kim