Tuesday 28th April
Hello All,
Not the greatest couple of days but I'll try and quickly summarise so as not to dwell as twer.
Not sure whether it is the recurring evil teething related saliva or an intolerance to nettle soup but Rosa has not been on very good form the last few days which is a bit exhausting and depressing. Much trapped wind although tonight at last she seemed to get it all out and was able to go off to sleep beautifully for the first time in what feels like ages.
We had an appointment with Dr.Arend (Rosa's pediatrician) this morning, it wasn't the greatest and after about 21/2 hours at children's outpatients at the hospital we were all pretty exhausted and emotional also frustratingly it seemed not much the wiser about anything. The thing we really wanted to know about was the blood tests they took from us all nearly a month ago to confirm the diagnosis. This is another aspect of our continuing limbo as we can't think about any next steps seriously untill we have that confirmation. We tried very hard to get some answers if not results then at least when we can expect results back, Dr.Arend was somewhat disappointing, in the information he had to give us, what he was prepared to hunt down for us and his manner. We had a feeling he didn't have the best manner already, when he decided to give Rosa a full examination, having just told us terminal news, very inappropriate we thought. Today again I felt he spoke over Rosa, about her which in some way dehumanises her, I know she is a baby and doesn't understand but he doesn't seem to address or acknowledge her as I feel he should. He also waffles in vaguely medical jargon without getting to the point. I feel his manner is certainly doing a lot to make me more assertive. I also feel he verges on patronising which is intensely irritating. I think that he doesn't engage well with us as people but more as a case and so everything is either medicalised or of no interest. I also think he is a rougher than he needs to be when he examines her. I am aware this may well be over harsh but I look forward to eating my words given the opportunity, his manner caused me to be first growly and then tearful, neither of which are good. If he is as bad as he seemed today we could always request someone else but maybe he isn't really that bad and maybe, we are hoping and thinking that once she is under the neurologists care we may not have to see too much more of him.
They also needed to take more blood from Rosa, as far as we can gather because they had it in the wrong pot last time.....may not be as simple as that but for gods sake people!!!! I didn't write before but since birth Rosa has been very difficult to find a vein in, well padded some might say! For whatever reason it isn't easy, after the MRI she came back to us like a pin cushion as they couldn't get a vein even though she was under anaesthetic and very warm; so last time she had blood taken in the hospital the lovely nurse suggested rather than jab away at her to get the Dr. to take it from her neck, more dramatic but comparatively quick. Another thing Dr Arend got wrong today from my perspective he tried to insist he could get a vein in her arm despite what we were telling him. It wasn't until the nurse came along and supported us that he backed down.....Anyway enough ranting for now. The lovely nurse (Debbie I think) also called the lab for us to see if she could find out about the blood results. They said they had them, and were doing them but couldn't say when they'd be done, rubbish I know but at least she tried to find out for us.
That's enough about today, I'm sure you get the gist. There has been lots of good stuff in the last week too, not least jingly jangly therapy and several special and lovely visitors but I think having got the rant out of my system I'm going to take myself off for an early night and hope for no more early morning kamikaze chaffinches! I'll try and do an ungrowly post about everything else in the next few days....A