Nathan is in the school play this week, Mr Bumble in Oliver – and a fine performance he gave last night too.
So that me and Rachel could attend opening night, our friends Pete and Su offered to do some ‘baby sitting’ shifts.
Not long after I got home Pete sent us this picture…..
……with the message “Just before he vomited on me!”.
They started Jude on a high dose of ACTH this time due to his age and size and so far no ill effects. His blood pressure has risen slightly but nothing of concern and as long as the next couple of days go well he will be able to go home at the end of the week.
We were asked to keep a seizure diary, something we have never done voluntarily. Having to keep jotting down the time, type of seizure and how long it lasted reminded me why we don’t do it. A page of A4 paper was full inside 4 hours. Hopefully the ACTH will bring about an improvement.
Nathan and Joe have the chance to do some summer activities with the Young Carers group they have recently got involved in. There’s a trip to Ironbridge, a holiday on a farm and a barge weekend.
Joe, I know you will be reading this at some point. STAY ON THE BOAT, DO NOT LEAN OVER THE SIDE AND DO NOT JUMP IN THE WATER. 🙂
Uggg…yeah seizure journals are a nightmare. I eventually had to stop mine because I became obsessed over it. Hope you see some improvement though.
Hope Jude is ok. Nathan was brilliant as Mr Bumble- well done!
Awwwww…I’ve never been to a play you know. Symphony once…made me feel so classy. But I’d much rather to see Mr. Bunmble!
That pic of Jude is priceless, just priceless.
I hope ACTH brings some relief. Funny…I used to always think seizure freedom. I’m sure there’s a psychology lesson in this… But I DO hope it’s seizure freedom for Jude…and if not…at least some relief!
btw…haven’t logged seizures in ages. Except for our last inpatient EEG…which reminded me why I haven’t logged in ages. I see a pattern amongst us seizure parents. I’m not sure if it would help…but there is an online site http://www.seizuretracker.com you could try to see if it helps keep things organized?
xoxoxo
…danielle
The picture may be priceless but so was my shirt until Marrey JR expressed his opinion of my pink stripey lacoste all over me!!!
tsk tsk Pete…isn’t it against the rules to complain about a lil’ vomit? 😉
…danielle
Imagine thinking you could actually tell Joe what to do… imagine believing he will listen! haha xx