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…

Ketogenic Diet: Week 5 - Can Daddy cope alone?



Week Five: Thursday 22nd – Wednesday 28th March (days 29 - 35)

#Ketogenicdiet tweets for the week:

Thursday 22nd March #ketogenicdiet week 5 starts here. Yesterday we had 2 readings above 3. Shh! Just about to check them now again to see if that was a fluke.
#ketogenicdiet #epilepsy oh well. Day 29 and still not ketotic. Will have to reduce maxijul again.


xxxxx

Daddy had to cope alone this week, well for a few days anyway, as I took Cheeky away on holiday.  Just a short update then – Mr. M wasn’t tweeting or blogging on my behalf while we were away!

No major problems – Daddy managed to make up all the feeds quite successfully, requiring only one phone call to check the number of scoops of maxijul he needed (even though I had written it down).  He managed to deal with the dieticians and take H to his appointments too.  Well done Mr.M!  I never doubted you could do it, ha ha.

H’s ketones peaked too and we seem to have found the right balance of maxijul (4scoops in his feeds if you’re interested).  Will see if they continue to remain high.

xxxxx

That’s all for this week.  Have a good week.



Comments