Not sure what to say, say nothing…..

….this is pretty much how I’ve felt the last few weeks – it’s been a head down get through it time. Jude’s back in his ACTH monster phase and although perhaps not quite as bad as last time…’s still bad.

His feeding tube is a right pain in the posterior too. The tube from the giving set that pumps the milk needs a little plastic adapter to insert into the tube that goes into his stomach only this adapter slips out with ease. ACTH thrashing monster is more than enough to disconnect Jude from his giving set and he woke this morning about 4.30am in a rage, I crawled out of my hospital camp bed to find Jude swimming in milk.

An hour or so later after calming down the rage I reconnected him and we both drifted off to sleep together on the camp bed. I woke up in another pool of milk.

In the next few weeks the tube will be replaced by a button – can’t come soon enough!

I shifted Jude again back into his cot and he lay on his front quite content and I slipped a teddy under his arm and it looked so normal. Little baby cuddling his teddy bear – I thought at the time it would have made a nice picture for here (but no camara with me). Unfortunately it was staged but I often think Jude looks at his best when he is asleep, I sometimes wonder whether he dreams and if so do the dreams make more sense than reality…I assume so given he looks so peaceful, so composed.

The photos we take are brief snapshots and mainly consist of the highlights – and we have many of those. So what inspired me to write this morning when I’ve not been able to on so many other days.


I think it pretty much sums up what I was thinking at 6am this morning and saves me the bother of trying to put it into my words.


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