This month it’s been all about food!
Sadly, Toby still isn’t interested in food at all but prompted by a couple of people who care for him we’ve been exploring the ‘blended diet’ which kinda does what it says on the tin, blended food pushed through his Mini Button straight into his tummy.
Why bother I hear you cry (at time I’ve wondered the same but more about that later) surely the Paediasure milk is nutritionally complete? Why does he need real food?
For us the answer is simple, poo.
For the last couple of years Toby has been on a purely liquid feed, yes it’s nutritionally complete but it’s all liquid and when he’s fed you can hear it literally sloshing around in his belly. On top of that his bowel movements were sloppy to say the least and he was on a daily dose of Movicol to help him go.
We’ve started slowly and found the best thing is the Ella’s Kitchen fruit pouches diluted with water and they go through the pump brilliantly. We have also blended then sieved prunes to give as a snack with the obvious side effects.
The results have been amazing, no more Movicol and fully formed poo! Sorry for the gory detail but it’s like having a new born in the house when all you have to ponder is the state of a nappy.
Encouraged by these great results we’ve taken the plunge and purchased the key ingredient to make the blended diet work, a blender.
Not just any blender. To get through the tubes into Toby’s tummy any food needs to be super smooth and the blender recommended by all the forums is the Vitamix, it’s a beast! It’s got 2.2bhp, it cost loads.
Without your support and the exceptionally kind donations you give us we couldn’t have afford this bit of kit but we really do think it’s life, or at least nappy, changing.
Over the last week we’ve been experimenting with different recipes, porridge with banana and prunes for breakfast, Lentils with broccoli, apple, turmeric and other goodies thrown in for dinner.
This really is a big thing for us and we finally feel like we can feed Toby to help keep him healthy, we can give him the supplements we want and the joy of it going straight into his stomach is that he won’t taste it so can’t complain.
Sadly the pump we use has an incredibly small bore to the tube so most of the feeds we’re having to use a syringe to push it into him but it’s a start, small steps and all that.
Again thank you, we literally couldn’t do this without your help.
We had a couple of nights booked at Helen House this month and encouraged by our trip away in September we left Toby all weekend while we had a lovely night away in the Cotswolds with good food, drink and amazing weather for a bit of walking before heading off to a friends to catch up with people. These short breaks do us the world of good and it’s great to know that Toby is happy, well looked after and safe.
Drugs & Seizures
Over this weekend we’ve finally weaned Toby off Perampanel, this was the drug we asked our neurologist to look at for us in desperation, we tried it and we lost Toby.
We’ve had Toby on minimal dose over the last week and now nothing and the results have shocked us as it’s shown just how much we’d ‘lost’ our boy in the hope of getting some seizure control.
Toby’s now smiling and laughing more, he not only has the desire but the physical ability to move into a different room to play with other toys if he wants to.
It’s been a real shock actually as we’ve realised just how much movement, personality and skills he’d lost but fortunately it’s slowly coming back, along with that twinkle in his eye as he reaches to grab your glasses off your face……
We had persevered with Perampanel as Toby’s seizures has become unbearable. He’s fully convulsive for between 3-15 seconds and this is happening every 1-10mins.
A 3 second seizure doesn’t sound a lot and in comparison to when he was having hour long ones it isn’t however it’s the impact that’s far worse.
Standing or sitting when a seizure strikes he goes down like a sack of spuds, his brain has switched off so there is no survival instinct to kick in and protect his head or face. It’s frightening how often he hits his head and we’re terrified of what other damage it might be doing.
Unless he’s in his big padded bed or strapped into is buggy or car seat we ensure he always has his helmet on to try and protect him a little. We walked into town a couple of weeks ago to see a friend and the helmet fell out of the buggy and we only realised when we were in town, anxious that it would be lost I retraced our steps and fortunately found it.
By the time I got back Toby had fallen and bust his nose on one occasion and split his lip on another fall. I was only gone for ten minutes.
Coffee & Cake
A big thank you to all at Jane Smith Financial Planning who held a coffee morning and auction all in aid of Toby’s Trust raising a whopping £500.
We’re so lucky to be surrounded by thoughtful and generous people that make this journey with Dravet a little easier, thank you for your support it means a lot to us.
If you’re around Onley on the 12th November and fancy a great night out then there’s a Race Night being held at the Carlton House Club with proceeds to the amazing William Crook’s Brighter Future Fund to support Great Ormond Street Hospital and Toby’s Trust.
Please get friends and family together and support what I know is going to be a great night.
We were approached by a local lady Racheal as she makes felted Christmas tree decorations and would like to donate profits to Toby’s Trust. We’re so touched by this especially after seeing how brilliant her decorations are.
For more information contact Racheal Crouch on Facebook
I’ve said lots of thank yous through this piece but we can’t stress enough what your physical, emotional and financial support means to us.
We’re looking at what adaptations we need to make to the house to enable us to keep living in the incredibly supportive community that surrounds us and it’s going to take thousands of pounds. Fortunately, due to your generosity the scary numbers associated with changing the layout of the house aren’t so terrifying, that peace of mind is so invaluable.
Thank you for everything you do for us.