We had high hopes for Jude’s EEG on Friday – a course of ACTH and Prednisolone and a marked improvement in his overall wellbeing should have been accompanied by a cleaner bill of health on the EEG…….unfortunately not.
Jude has had three EEGs since May, apparently the May one was a mess (my words not their’s) and it had improved in June but the difference between this EEG and the one in June is apparently minimal. One of the doctors had a quick word with us…..and that word was “complex.” I know where ‘complex’ is leading – multiple seizure types, difficulty controlling them…..
However, none of this diminishes what we see (and hear) from the little man. He is beginning to develop much greater awareness of his hands and arms and will happily swipe away under his play gym – actions he doesn’t repeat in other settings so we’re fairly sure now that he knows that is he waves his hands around he causes something to happen. He is also happy(ish) if you put him on his tummy, something that we haven’t been able to do for a few months now either because it would send him into a tantrum or more recently because of issues around his gastrostomy.
Rachel used to call Jude my ‘babe magnet’ such was the tendency for him to draw admiring glances almost exclusively from other women…..seems Jude is turning the tables. I took him to the doctors for his blood pressure to be checked on Friday and was sitting contentedly in the waiting room when I felt a damp patch. Having a baby sitting on your lap always carries some element of risk but Jude’s gastrostomy adds to that risk somewhat. There is a small adapter that has a habit of falling off without warning which allows….leakage. Well Jude had managed to leak on my trousers…..in a very specific area of my trousers…nowhere else…just this one place…and it looked like the only thing it could bedidn’t look like Jude had leaked his last feed on me…it looked very definitely self inflicted..nobody would have thought it anything else…
So I’m sitting in the waiting room with Jude on my lap covering up the offending damp patch and the door to the nurse’s office is a good 10 metres away and I knew I was going to be called anytime soon.
And in walks two rather attractive young mothers who cast a glance over at me and my cooing Jude with his cute sticky up hair and they sit down right between me and the nurse’s office. And I’ve got a damp patch. And I am going to have to walk right past them.
So I did what any person in my situation would do, I held Jude under his arms so his body hid the offending patch and waddled into the office in a most ungainly fashion…..and did the same on the way out.
When I get back home I find that the damp patch was a little bigger than I had realised and had actually spread from the front all the way around to the back which would have been in full view of the whole waiting room as I waddled in and waddled out.
My babe is a babe magnet no more………………….