Noughts and bollocks

Well people, its been another roller coaster week.  You'd think after nine months things would have evened out and, as a rule, they have.  Every so often though we are reminded that this is no ordinary situation and standing in my PJ's at 11:30pm on Friday night chatting to three paramedics was a fine example of this. 


Jake has a UTI (bladder infection to you and me).  The good news is that they no longer overwhelm his body and he copes much in the way we would.  The bad news is that any infection can trigger a seizure; we haven't had a seizure for months and were all hoping that they were either easing off (as they sometimes do), or at least being managed by the cocktail of drugs Jake has to take.  Sadly this was not to be and so, in bed on Friday night, Jake began to spasm on his left side. Bugger.  


A seizure wouldn't normally require an ambulance; we are lucky in the fact that Jake's seizures tend to be short lived and self terminating and the treatment is nothing more complex than lots of rest.  The problem is that Jake's difficulties with language mean that getting a clear response to a question is difficult. So, when Jake clutched his chest and was asked the question 'do you have chest pain?' his answer of 'we think so' put together with the spasms being mainly in his left arm and his having an existing heart defect, was sufficiently worrying that we didn't mess around.  


The ambulance arrived within three minutes and the crew were absolutely fantastic.  Lots of tests confirmed that thankfully it was 'just' a seizure.  Jake was brilliant up to the point when I needed to pull the ECG pads from his body.  Apparently this hurts quite a lot...apparently he doesn't like me very much!!


Ho hum, thems the breaks!


But wait my hopeful friends; there's plenty of good stuff to report as well.  Three excellent examples being;


1. Jake no longer suffers the extreme distress we experienced on the journey to and from home at the weekends.  The psychologist travelled with us on Friday and is happy to conclude that this distress was triggered by over stimulation and not trauma as we had feared.  Now that he understands where we are going he no longer has to focus on it, reducing the stimuli and making him calmer.  


2. The catheter is coming out (woo hoo!!!).  The bladder retraining has been going really well and they are going to take advantage of the antibiotics he is taking for the UTI, which will help him heal and manage the change over.  Fully continent people, oh yeah!


3. The bit of his brain where humour lives has decided to rejoin us.  Sarcasm is making a particularly spectacular return, most notably in my direction!  


My favourite example of Jake using his special brand of Korving humour is from a therapy session with his fabulous key worker Sarah (I am hoping to adopt her).  During one of his regular sessions in the standing frame Jake was being distracted by a game of noughts and crosses (apparently standing in a frame for 15 minutes is pretty boring, no matter how good it is for your ankles).  The frame has a table attached to enable this kind of distraction and two games had already been played.  Starting to tire, Jake was encouraged by Sarah to play 'just one more game'.  You can see Jake's response to this request below.  Yes, that's right, he wrote 'bollocks' in the square.  

He may have dysphasia, but it seems that he has no problem communicating when he really wants to!


He's pretty amazing, isn't he?