This is a bit ranty, apologies in advance but it was how I was feeling at the time! Much better now, will write more soon!
Thursday 9th July
I'm up too late because I was lying in bed feeling wound up and so thought that I'd get up and do something instead.
This week has been a bit crap, mainly I suspect because of my stupid hormones but also because Rosa is still quite far from 100%. She is much better than she was this time last week which was scary but she is still super sensitive, (hmm, sounds familiar maybe she picking up my vibes!) very clingy and a bit uncomfortable quite a lot of the time it seems. There isn't a fix it is just a matter of getting through each day as best we can and appreciating any good moments there are. Which is all very well in a reflective mood at 1am. but when screaming is what she does from waking up onwards it's not so easy to be zen, well no, it's not that bad but have done a lot of feeling very tired and very sad again this week. Two more or less sleepless nights with teeth in the middle of the week didn't help and nor did following one of those bad nights with a consultation with useless Dr.Arend. It rattled and seriously pissed us off again and we really feel we're not going to do it again unless there is a very very good reason. He doesn't seem to have any respect for Rosa at all and I don't like it. The only thing he said to her through the whole examination was 'hello madam' when we first arrived. Bearing in mind he was poking and bashing and measuring and rolling her around and listening to her chest and back for at least 20 minutes, how can you not speak to the patient throughout that? It is no wonder all the babies who see him scream blue murder. I would have thought that you needed to like children to be a paedeatrician but apparently not, he seems to have no interest in Rosa as a person and knows practically nothing about Canavans, he actually said there was no point in him reading up on it as it is so rare, it seemed to escape his notice that one of his patients suffers from it so he could maybe read a little tiny bit?! Rant rant, I know, but it has to be said, the man needs such a schooling in manners I wouldn't know where to start. To add to that, he spent half the consultation smirking at us as we tried to express our exasperation at the pace at which everything has happened so far. We had written a cross letter, I think I mentioned it (which needless to say he hadn't read) he basically said Dr.Sharples is very busy and we were lucky we didn't have to wait longer to see her......!!! you can imagine how we felt and to be fair he was probably smirking because he was embarassed because I'm sure we were both blatantly more than a little pissed off and assertive by this stage, it's not bloody good enough (I know, I say that a lot in this blog) but his response was; yes I know but what are you going to do about it?... the whole NHS is like that so tough really. This is a small selection of the irritating/upsetting things that occured in that meeting so, well, you can probably understand why we won't be wasting anymore time with him if we can help it, maybe that is his grand plan to cut his work load?!
Now it is time for bed, hopefully I'll wake up less ranty!
I was still quite wobbly/cross in the morning but we have since had a lovely super weekend with lovely super friends despite the rain. We feel very lucky in the friends department and recharged and ready for another week, hooray! more soon.....