September has been a mixed bag for Toby and us on many fronts.
We’ve been trying to get Toby into a nursery so that he can be around other children to interact and learn like most other children do. Sadly due to his condition it’s a lot harder than you would think as many nurseries aren’t prepared for his medical needs. He needs someone watching him all the time in case he has a seizure, in addition to administering emergency medication, calling an ambulance and using oxygen, which is understandably daunting for mainstream nurseries. Fortunately Kim has persevered and has had a good meeting with one place that has agreed to do a trial. Watch this space!
Toby’s partial seizures have been really well under control this month which is great news as we’ve finally got a review of the drugs quantities and it does seem to have made an impact. Sadly he’s had a major seizure every week, ranging from 21 to 31 minutes long which is a hell of a long time when you’re watching it happen and there are major risks from seizures lasting this long.
For the first time Kim had to administer Paraldehyde which we now keep at home and use when the Paramedics arrive. Apart from being a foul smelling liquid that lingers for days it’s also difficult to administer as it’s up his bum. Fortunately the first person on the scene was Mike, one of the Emergency Care Practitioners (kind of a super Paramedic), who has spent quite a lot of time with us so it was a big relief for Kim to have a friendly, very well trained face at the door.
This month we braved four nights down in Brighton and spent the time walking along the beach, playing on the sand and celebrity spotting (Zoe Ball) which Toby thoroughly enjoyed, the sand, not Zoe Ball! Fortunately Toby didn’t have a seizure whilst we were on holiday, but did have one an hour after we got back. He does like to keep us on our toes.
Possibly the most exciting thing about September was getting Toby’s Trust set up and putting the website live. The bank account is open, the PayPal links on the website are working and more importantly we’ve got our first ‘event’. The organisers of The Big Olney Food Festival (BOFF) very kindly announced that all proceeds from the Great Olney Bake Off would be split between Toby’s Trust and a local charity, Williams Brighter Future. As an event BOFF was amazing as ever and we are so grateful to everyone for raising funds for Toby’s Trust.
We have also been lucky that since the bank account has been open we’ve had an incredible amounts of donations from family, friends and members of the community that we haven’t even met. We have been completely overwhelmed by peoples generosity, such kindness gives us a real lift during the darkest moments. Thank you from the bottom of our hearts.
Here’s to the month ahead!