This is going to be a short update as we want to focus on really saying ‘thank you’ to some incredible people, here’s why:

On Friday we returned from 3 days away in Italy, we’d had a lovely city break in Bologna eating lots of good food, drinking the local wine and catching up with some proper sleep, it was perfect.

Leaving to go on our mini break was difficult, we’d taken Tobes over to Helen House a little earlier that usual so we could get him down for a nap and we could head off to Heathrow without worry of delays however Toby wasn’t happy at all that we were leaving and stood screaming in his bed, it was very distressing and made our hearts break to leave him. We know he’ll be fine and has the best care ever but it’s still really difficult as his parents to leave him.

The next morning we had a message from my Mum to say she’d spoken to Helen House and Toby had settled and was fine, it gave us peace of mind to enjoy the next few days.

We flew home around lunchtime on Friday and our brilliant respite agency, Amegreen, were collecting Tobes from Helen House, they should have been home so we dropped them a line to see how things were going.

Badly was the answer.

Reluctant to give us details while we were still travelling home (M25/M1 on a Friday afternoon was not quick), we found out that Toby had already had three seizures that day, two at Helen House in the morning and one on the journey home, he then had another while we were on the phone trying to find out what had happened.

Then we found out the rest.

On Tuesday the doctors at Helen House were concerned about a rash he had developed alongside a temperature. Really concerned.

They blue lighted Toby to the John Radcliffe in Oxford with suspected meningitis.

Fortunately for everyone his blood tests came back clear and he was eventually allowed back to Helen House thanks to his grandparents managing the whole situation brilliantly.

So here come the thank you’s:

To Toby’s grandparents, Kay & Mike – they took the call from Helen House and dropped everything to go to Toby’s side. They bravely took the decision to not tell us anything (unless things went downhill) to allow us to have a proper a rest. That’s a massive undertaking, even for a grandparent, and we’re exceptionally grateful. Caring for Toby in a hospital is extremely tiring. Being put in an adult bed that is completely unsuitable and not being able to explain to him why he’s there and why he needs to stay put is exhausting, not to mention the battles about blood tests, drugs and food.

To Toby’s Granny Gill – she supported Kay & Mike in their decision to not tell us, looked after all three dogs and was ready to take over in the hospital if Toby had to stay in. We returned to dinner in the fridge and a bottle of wine ready to open, not to mention the ironing.

To the Helen House team. Thank you for taking such good care of our boy, he’s hard work sometimes and can clearly be a drama queen, without the short breaks you give us we couldn’t keep going on a daily basis and wouldn’t have the energy to keep smiling and takin caring of our boy.

To Laura and Ciara from Amegreen, thank you. We know you love him to bits but it’s a big thing to collect him from Helen House and have him in the car with you while he’s having seizures and the advice and support you gave our parents when everything happened was very reassuring.

Loads of other stuff happened this month but let’s just focus on the wider ‘Team Toby’ and how bloody ace they are for keeping us going.

Thank you.