The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

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.



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