This month saw two major events for us, building work commenced and a certain someone had a birthday!
Toby’s fifth birthday was something we never thought we’d see at points over the years but he’s here, doing well and most importantly, able to eat his cake!
It’s the first year he’s properly been able to eat the amazing cake that Kim made for him, something I got quite emotional about, it’s such a small thing but huge at the same time. Needless to say, he tucked into the chocolate cake like a pro and seemed to love it.
He had a lovely day at school where he was spoiled by the whole class and then we had the grandparents around for dinner and cake followed by all the amazing presents, cheques, donations and cards you all gave to Toby, we’re very grateful, thank you.
Thank you to Hazel and Paul who brought Toby a little something but also us a bottle of gin and some beautiful glasses, such a lovely thought.
We’ve deliberated for years over disabled adaptations for Toby, never quite finding the right solution or being able to afford what we wanted however after a few beers during the ‘beast from the east’ earlier this year we scribbled a drawing on the back of a fag packet (might have been a piece of paper but artistic licence….) which meant putting an extension on the front of the house to house a wet room and bedroom downstairs for Toby.
After months of planning permission, finding builders, moving services, getting extremely frustrated with OpenReach, the day finally came when team DBF started digging trenches.
Two weeks in and all the brickwork is done, this week the roof goes on and then the existing porch comes down.
It’s all moving along at a good pace and the guys are doing a great job.
This is going to be the start of living differently for us, with Toby living downstairs it’s far less risky for carers, grandparents and us to carry him up and down the stairs. While he is gaining strength and independence it’s still safer for him to be on the ground floor with a large walk in shower that will accommodate a wheelchair.
Whilst we are very fortunate and get a disabled funding grant for this work it doesn’t come close to covering the full extent of the works and that’s where Toby’s Trust has come in.
We are so lucky that you, your friends, your families, your work colleagues and so many others have raised so much money for Toby’s Trust, it’s meant we can crack on with a solution that is right for Toby and us without having to massively compromise how we live our lives and we could not be more grateful to each and every one of you. It means the world to us how generous you all are. We’d like to say a special thank you this month to our lovely friend Helen Peacock and her colleagues at Engie in Newcastle who celebrated their 4th birthday with a raffle, games and fortune telling all to raise funds for our gorgeous boy. This is one of many fundraisers they’ve had for Toby. We couldn’t be more grateful.
As Toby is a big boy now a lot of his meds have changed, the team at Cobbs Garden doctors surgery and Cox & Robinson pharmacy are brilliant at supporting us and getting everything we need. So many other families struggle with getting the drugs, often having to go to hospital for them but we’re lucky we only have to walk into town.
Likewise, when school called and said they were worried Toby might have chicken pox and could we get him checked out the GP’s saw us within a matter of hours, were really professional and understood that for Toby chicken pox could be very serious. Fortunately, it was just a rash but it’s great to be checked out so quickly.
Toby development age remains about 10 months so he hasn’t really moved on from baby toys and books, he loves anything with buttons that he can press and they make a noise. A week ago, Kim put a message on Facebook to see if anyone was having a clear out of such items before Christmas.
We were inundated by so many donations, it’s incredible how generous people can be.
We’ve identified lots of toys and books that Toby will love and put them to one side for him, the rest which might be a bit old for him are ready for us to take to Helen House Hospice next week when we’re there for our precious respite stay.
Catching up with family
The beginning of the month saw a visit from Toby’s Aunty Karen and Uncle Andy for some early birthday celebrations. Toby was on fine form, which was such a relief and meant we could all enjoy the day, with Toby demonstrating just how much he loves going in the bath and why we need a wet room. He was wonderful to see Toby bright and interactive with his loved ones.
The following week we made a trip to a gorgeous part of Wiltshire where my brother and his fiancé have recently bought a new house. Sadly, we had had to postpone our original trip that we had planned in Oct due to exhaustion so it was great that we were all in a good place and up for some visiting.
It can be very stressful being away with Toby in a new environment, as we’re all on edge and worried about seizures however he was as good as gold on the journey then seemed to settle in the new house really easily which made us relax, as a result we all enjoyed the weekend and are looking forward to Christmas down there.
My aunt & uncle were also up for a couple of days and it was lovely listening to them say how different Toby looked as it’s been a while since they saw him, less drugged looking and far more active.
It’s difficult sometimes to see that he does make progress but when folk haven’t seen him for a while it’s so nice to hear that they see a positive change.
Once again, we were down at GOSH for an appointment with Professor Cross to discuss the new drug Toby is trialling. I hesitate to put it in writing but it seems to be helping a little as he’s having a few less seizures. He’s currently having 2 seizures a week versus 4 or 5.
The nice thing about this drug is that it isn’t leaving him looking and acting ‘drugged up’ – it’s not impacting on his day to day life so it’s a winner at the moment.
We’re very grateful to all our pharmacist friends out there who look at stuff for us, Karen Braithwaite did all the research on this drug and we took that to GOSH and asked to try it, the professor there has never prescribed it so it’s brilliant we have such clever friends!
As anyone who has had any building work or house renovation done it can be a stressful time, mess, noise and the financial impact to worry about on top of juggling work and with us, a Toby.
So far it’s going really well and one of the main worries about money for all the equipment that Toby needs has been taken away by your generosity. We just wanted to say a massive thank you again from the bottom of our hearts, it means so much to us.
This will be the last update before Christmas so I’ll sign off by wishing you all a very merry Christmas, enjoy time with friends and family, food and drink and too much chocolate.