It always amazes me when I write these updates how much goes on in a month, it often feels like it flies and if we blink we miss it but taking the time to reflect on some of the memorable things that happen is really cathartic and reminds us of all the positive things that happen to our family on a regular basis.
Time away
Toby was on good form through June which allowed us to prepare for a couple of big milestones. Firstly I went away working for a couple of nights, something I used to do a lot before Toby was born but is now a difficult thing for me to get my head around. I’m always worried about the ‘what if he has a seizure and I’m nowhere near to help?’ and this trip tested me to the limits as it was the far north of Scotland. Fortunately Kim had help from the grandparents and Toby managed to not have a seizure until ten minutes before I walked in the door.
A few days later and it was Kim’s turn to go away, this time for a holiday to Croatia with her sister Karen for a few days. It did her the world of good and reminded us there is life outside of Toby, seizures and hospital. Daddy Day Care seemed to go ok and with lots support from grandparents again we had a great time.
NG tube
The bane of our life, the nasogastric tube that goes up his nose and into his tummy for feeding, if the sticky tape holding it in place isn’t coming off then Toby is pulling the tube out, it’s a nightmare! We’ve been foolish really as we’ve been too squeamish to put it in ourselves (we have to do it several times to get signed off to be allowed to do it) as it’s horrible. It’s only a thin tube but it has to be pushed up his nose and down into his throat and into his tummy, it’s 30cm that have to be done. You can imagine how he reacts to having it done, it’s horrible, painful and uncomfortable, and he screams a lot.
And it comes out daily.
That’s a trip to hospital, every day.
To go through the screaming and gagging, please just drink your milk!!!
Oh, and the ‘protective’ tape on his cheek to keep the tube in place? Toby’s reacted to it and it’s really damaging his skin, it’s bleeding and weeping as the tape is being pulled off and reapplied so much. Poor little man but he seems to tolerate it all so well once it’s in place.
Until the next day when we go through it all again. Another hour round trip to hospital.
Ketogenic diet
Just before I went away we finally got all the feed and equipment for Toby to start on the Ketogenic diet so a whole new routine to get used to.
It involves a super high fat diet which the body uses instead of sugar or carbohydrate as its energy source, as a result ketones are produced which are known to help with seizures.
In order to know if his body is safely in ketosis and not too high or low in sugar we have to do a blood test twice a day, just another level of medical training we have got used to doing! Preparing the kit, pricking his foot then taking the blood to test is not something we looked forward to doing but has now become just another part of life.
As Toby still isn’t eating and mostly not drinking the diet is slightly easier as we’ve got a pre mixed liquid to feed him through his nasogastric tube.
Seizures
The good news is that his seizures have been a lot less frequent this month and have lasted for under 10mins, we’re not sure what the contributing factor is, it could be the diet, it could be that he’s not got any bugs or maybe his brain has developed a bit and it was always going to be a little better, we don’t know.
What we can see is a real spark of the real Toby, he’s been so much brighter, more inquisitive and precise in his movements. I do think this is down to the diet almost eliminating the small partial seizures he usually has all the time.
Someone once likened it to trying to work on a PC that keeps rebooting, you get nothing done. Imagine trying to learn if your brain keeps rebooting, you just can’t.
Hopefully the diet will help with his cognitive development and he can do a bit of catching up as he’s a long way behind in his motor skills, understanding, mobility and speech but we’re working on all of them with various professionals.
The Big Canoe
As ever we’re so grateful for the people around us who go out of their way to raise money for Toby’s Trust.
Mid July saw three old friends of our John, Gary and Paul set off to ‘do’ the river Severn. Starting high in Wales they spent two long, gruelling days up and down mountains on bikes before transferring to canoe’s in Shropshire to tackle three counties worth of river on the water. After six hard days they made it to the head of the Bristol channel and their end point.
Not only did they have a fantastic adventure they raised over £3k for Toby’s Trust which is incredible, thank you to everyone who donated so generously.
What Toby’s Trust means to us
We feel very fortunate that you all contribute so much to Toby’s Trust and it gives us a real feeling of a safety net.
At the moment we haven’t spent a huge amount of the money but when we do need equipment it’s there and available for us.
Toby’s buggy, the venerable bugaboo was finally giving up under his weight (it was a generous hand me down gift and has already carried three children before Toby) so we needed a replacement solution that would last for some time. The problem is, not many buggy’s are designed for kids much over 15kg.
Toby is 14kg.
It took Kim hours of research to find a ‘trail’ buggy designed for taking older toddlers on very long walks and was designed to take up to 25kg.
Thanks to Toby’s Trust we were able to quickly buy the buggy without wondering where we’d get the money from. Thanks to you Toby will be walking Brady the dog for a long time to come.
PEG
As the end of the month approached so did Toby’s PEG operation. The PEG is a permanent tube through the stomach wall into his tummy to make feeding easier.
Whilst it’s a simple operation (10mins of actual surgery in the end) there are complexities and with Toby there was a big unknown over what may cause a seizure and how he’d react to the anaesthetic so the surgeon booked him a High Dependency Unit bed for a number of nights to make sure he was in the right place.
It turned out that everything went fine with the operation, Toby came round well and without seizure activity. Being on HDU was great as it’s just a step down from Intensive Care so it’s still one on one nursing care but as parents you’re not allowed to stay overnight.
Toby being Toby he bounced back really quickly and was soon charming all the nurses, I think they were a little bit sorry to see him go!
Sadly Oxford only has a limited number of rooms provided by Ronald McDonald House and we didn’t get one but thanks to Toby’s Trust we were able to rent a small room and kitchen in Oxford so we could stay near Toby whilst he was in hospital.
We’re at home now and getting used to cleaning, turning and feeding through this new tube in his tummy, it’s not pretty, I wish he didn’t have to have it but he does so I’m sure we’ll all get used to it and it’ll become just another part of life.
Dinner
In a ‘and finally’ good news style I have to mention us being spontaneous and going out for dinner one evening. Granny babysat once Toby was asleep with every monitor possible pointed at him. We had a lovely time at the pub and met some neighbours at the bar.
We don’t know them well but they’ve always been lovely to us.
Unbeknown to us, they paid for our meal.
As soon as we got home we went round to thank them and had a lovely chat and got to know them a little better.
It was an exceptionally generous act of kindness which has led to us swapping home grown veggies.
Next month
As well as a trip to Helen House we have planned we’re looking forward, if that’s the right phrase, to the 9th August.
After her little sister’s Christening a 14 year old girl, Georgia Brock from Olney is going to be shaving her head for Toby’s Trust. How amazing is that? Try telling us about the ‘youth of today’ and we’ll give you a very different view to the news.
We didn’t know Georgia before she decided to do this incredible thing for our son but she heard about Toby and wanted to do something, we can’t think of anything more personal to a young lady than what she looks like, to take radical action like this is beyond words.
We’ll give you to full story and pictures as it happens!
Once again, thanks for all your support, we can’t do this without you.