Accepting My Child Will Never Walk

I remember reading, a few years back, about someone with cancer feeling inadequate because they weren't running marathons or raising millions of pounds for charity. They were 'just', you know, getting on, turning up for chemo, hoping for the best. I've read too about people who've become depressed (understandably) as the cancer has taken hold; felt like giving up. But those aren't the stories that make the papers; people don't want to read about that. They want INSPIRATION. Defying the odds... That kind of thing. Not just ... Well you know ... The everyday kind of suffering.  
I wondered how it would feel to have cancer and read about the people running 26 miles when you're barely fit to get to the end of your bed. Do you think 'fair play', or do you feel guilty, or unworthy, or maybe that you're just not trying hard enough?
Mind over matter and all that!
Hugh's undiagnosed condition has left his muscles very floppy. He can't walk or si…

The Ketocal kid

The Ketocal Kid?  That's Little H that is! 

He has currently swapped his 5 feeds a day of nutrini mulitifibre 'a nutritionally complete tube feed for the dietry management of disease related malnutrition' 

 for ketocal  'a very high fat, low carbohydrate, nutritionally complete vanilla flavoured liquid product'

The Ketogenic Diet is a high fat, low carbohydrate diet used in the treatment of difficult to control epilepsy.  Little H definitely has what you'd call 'difficult to control' or 'complex' epilepsy.  His seizures are life threatening and have scared the life out of me repeatedly.  I have had to resuscitate him more times than I'd care to imagine, the most terrifying of which was at the side of a dual carriageway.  You can read more about H's epilepsy in this post: Six months on from an epilepsy diagnosis  

When medication after medication failed to control H's epilepsy, his neurologist decided to try him on the ketogenic diet.  A brilliant website and charity providing lots of useful information about the ketogenic diet is Matthew's Friends.  Have a look if you want to find out more.  

I am using this online diary to chart Little H's progress on the diet as a reminder to myself, but also in the hope that it may help others starting the diet to know what to expect.  You can either click on the links to the individual posts below, click here or follow the 'ketogenic diet' link under the labels near the top right hand side of the page.  

Blogs Posts on the Ketogenic Diet:

You can read about Little H's friend Sam who is also starting the ketogenic diet here: Samuel's Ketogenic Diet Diary