Meet the gang
Samuel likes to hang out with some special friends at home. Edgar and Max hang out with Sam in his nest downstairs. Edgar was given to him by his Auntie T and Max was given to Sam by Auntie C when he...
View ArticleTake the rough with the smooth
Well readers, we seem to be having quite a good period at the moment. Very good in fact. Please don’t get me wrong, Samuel is still having seizures every day. But at the moment he doesn’t seem to be...
View ArticleBeliever in hope
We finally have a date for Samuel to go into hospital to start the ketogenic diet. Assuming that he doesn’t suddenly come down with a bug and that there is a bed available, we are booked to go in on 23...
View ArticleDiagnosis – what’s in a name?
Samuel got his official diagnosis last April (2011). We were told he had ARX. But we’d already suspected that would be the case because his neurologist (who I continue to be in awe of) suspected that...
View ArticleCelebrate: The ultimate milestone
Under ‘normal’ circumstances (whatever that may be), in my 17 months career so far as a Mum, I’d have noted and celebrated Samuel’s milestones. When he said his first word and what it was, the first...
View ArticleTricky customer
Samuel is going into hospital on Monday as an inpatient to start the ketogenic diet. I like our hospital, well as much as anyone likes a hospital. I’m use to it. We got there a lot for appointments or...
View ArticleGod save our NHS
I talk a lot about Team Sam. Team Sam is headed up by, well Samuel of course, and consists of not only his Dad and I, but all the people who love and care for him – that includes Julia’s House who look...
View ArticleFats and Fits
TUESDAY So, day two of our hospital stay. Not quite sure what to say really. We’ve started Samuel on a medicine called Pancrex to help him absorb fats better. He started on 1.55ml yesterday but we’ve...
View ArticleAn O thing
So, we spent the last week in hospital. ‘What?‘ You say. ‘I didn’t know about that‘. Well reader I would have written a little post if I could have done (mainly to relieve my boredom) but the signal...
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